The latest from Theresa...
In this household, asking for a simple "picture of all the girls" can take on a life of itself! In order from left to right stands Sara, Emma, Anna, Amanda and Aleela. Having them all under one roof for the holidays was without a doubt, the best gift of the year! Yet mixed with memories of childhood Christmas' past, were moments of quiet melancholy. Since those early years my family has grown - there are two more beautiful daughters, a son-in-law, a fiancé and two wonderful boyfriends - and trying to find opportunity for everyone to be together at the same time is becoming increasingly difficult! I can say though, with a very thankful heart, that at some point or another, most all of them were home. And for that, I am truly blessed.
As I think back over the past two months, since that is how long it has been since I last updated, I find that I have lots to look back on. It's always interesting to me to look back "after the storm". I use the phrase "after the storm", because it seems that no matter how prepared I think I am, the holidays start out like a slow sprinkle and by the time they're done it's somewhat like the winds of a hurricane have blown through! And as much as I thought I had readied myself (living in the present moment, and all) I found myself swept away - not completely - but tussled around a bit. Enough so, that I think it is good to look back and learn another lesson or two from where I have been.
It's funny how these things happen. Sometimes we know when we are being swept away. But often times, it's only after the fact that we wonder - How did I get here? Why am I so exhausted? How did I gain 10lbs? Why did I let him or her push my buttons? Why did I get into that argument? Why did I not enjoy that visit? Why, after all my preparation, do I feel so empty? If we are not careful, we further the harm to ourselves by attempting to "get it all under control". When the fact is, these things are not really ours to "control" in the first place. It's actually the illusion of control that has the tendency to get us into trouble! And holidays, by nature, are the perfect opportunity. The very concept of preparing for the holidays lends itself to thinking of the future. What will I need to do? What will I need to buy? Where will I need to be? How much money will I need to spend? What will people think of this or of that? And the next thing you know, the actual moment of anticipation has passed and we vaguely even remember it. Moments, missed in time, never to be lived again.
So here we are. Me sitting in a quiet house, snow falling, dogs sleeping and children gone. You sitting in your cube or office or maybe a busy coffee shop, with the quiet murmur of business as usual in the background. Are we here? Are we in this very moment? Can you feel the breath come in....and go out....and come in.....and go out... In this moment there is no right or wrong, there is no good or bad, there is no regret and there is no worry, there is only this moment. And when we learn to not cover up this moment with our thoughts, the miracle returns. A depth, a newness, a freshness. A freedom. A peace.
I look back and I laugh quietly to myself. As if to gaze at one of my daughter's when they were young.
You are so beautiful.
On the health front - a few updates...
I finally had my first visit with the new rheumatologist. What a wonderful doctor! I am so pleased to be able report this to you as good rheumatologists, for some reason, are hard to find. I'm part of a Lupus support group and it seems that this is the number one complaint among patients there. Dr. Bryant was not only very pleasant, but he was extremely informative. It was also clearly apparent that he had studied my records from both the University of Minnesota and the Mayo Clinic, and had come prepared to suggest new possibilities for my care. One of the more urgent concerns is the need to get me off steroids. So we made a plan to increase the oral chemo and slowly start decreasing the steroids over the next few months. So far, so good.
I also met with the good Dr. Walk since I last updated. The good news there - no negative changes neurologically. So the plan is to continue with the IVIg indefinitely. The tendency is to increase the dosage since the positive affects seem to wear off the closer I get to the second week, but the chances of reaction increase as well - and I've been down that road before! No thanks!
I still struggle with the day to day. Pain, fatigue and cognitive "fogginess" are my constant complaints du jour! If I can stay out of the hospital for another three months, it will be a year this March since my last overnight hospitalization. Now THAT is something to be thankful for!
Happy New Year!
The latest from Theresa...
Two to three times per year I make my way to a place called Clare's Well in Annandale, MN. Since I have been sick, my visits have not been as regular, and this past visit found almost a year to the date from the last. At first, the time spent here on this wonderful farm setting was time saved completely for myself. Alone, in my little hermitage, finding peace and reprieve from work, from family, from expectations. Filled with reading, artwork, ritual and as much nature as I could possibly fit in. The past few years, I have shared this experience with my oldest daughter, Aleela. It has become a tradition I look forward to eventually sharing with all my daughters.
This amazing place is run by four Franciscan Sisters and a community of loved ones and volunteers. These women, all much past the age of retirement, can each individually out work me even in my best of days. The food all home grown, home cooked and filled with the essence of a grandmother's love. This truly is my favorite place on earth. And it is indeed the most holy ground I find myself on. This is a place free from the constraints of denomination and political correctness. Where compassion is at the heart of every thought, every task, every fiber of these beautiful women. Finding yourself here means being accepted and loved in the purest form.
On one of our walks through the woods this past visit, which by the way, was November 4-7, Aleela made this comment, "Mom, I can't believe how much more at peace you are this visit." At first, I felt this little twinge of defensiveness. What? Me? At Clare's Well and not being completely at peace? But then she went on to add that a year ago at this time, I was still trying to come to grips with my new diagnosis. She mentioned how our conversations were preoccupied with this fact, how I felt the need to discuss my situation with others at the table during our meals and how "restless" I was. Once I let go of my need to be in control - which, is sometimes hard with children when we're wanting to be the teacher in all situations - I was able to slow my thoughts down and just think back. Back to the beginning, way back to the endless days of hospitalizations, back to emergency room visits, near death experiences, unbearable pain, lost months of work, frightened children, benefit donations, medications by trial and error, countless piles of paper work, long term disability insurance..... the list goes on and on. I wish I could put into words the depth and breadth of my fear of the unknown during those days.
And yet, here I am. There I was. Walking with my daughter in the woods...at peace.
How did I get here? As I walked silently in the woods that day, I traced back over each step. I remembered something I had recently read in regards to living in the present moment. That the best way to care for the future is to take care of this very moment -the one you are in, here and now. But still, this concept seemed distant from me. I makes sense - in theory. But as I traced back over the steps of the past year, now it began to make sense in fact. I could see how each moment of my life was somehow the accumulation of cause and effect. Each moment dependent on the past moment. A series of decisions, of thoughts, of moments in time giving way to new life. Much like the dandelion I saw sprouting in the path - there in the middle of November. This bright yellow miracle did not just pop up on it's own accord. Things had to be right. Causes and conditions - a seed, water, sunshine, warm earth. And behold, new growth. Without these conditions, the dandelion would not have what it needs to poke through the soil.
I think this is how our minds work. Just as that dandelion would not grow under the cover of dead leaves, below zero temperatures and a foot of snow. Peace does not come when we neglect to take care of ourselves. The conditions of our minds and or our lives must be right. We can not fix the conditions of the past, we can not control the conditions of the future, but we CAN care for ourselves in this moment. As difficult as the past years have been, as unproductive as I have felt they were at times, what I did not realize was that by caring for myself I created the conditions required to grow the most beautiful "peace" I could ever have hoped to have. And like the dandelion growing in November, it defies all odds.
Care for yourself. Make your conditions right. Fill your hearts and your minds with thoughts that are good. Read good words. Watch good TV. Listen to good music. Have good friends. Eat good food. Live and worship in a good space. Smile. And if you don't feel like smiling - just pretend. And I promise you, if the conditions are right, you will be amazed at your new growth.
As for me, I'm just where I need to be. I still suffer. Sometimes my bad days seem to greatly outweigh my good days. In fact, I've been on a pretty miserable stretch the past couple of weeks which puts me in bed quite a bit of the time. I see my new rheumatologist in about three weeks, so maybe he will have some new suggestions. Until then, lots of medications and IVIg every other week. On a good note, I found out I was approved for social security disability last week. Considering 80% are denied the first try and the average wait time is 24 months - I feel very fortunate that my decision was made in less than three months.
Happy Thanksgiving to you all. Eat good, travel safely and love much.
The latest from Theresa...
Photo by David Johnson, Star Prairie Gallery
I've been doing a lot of thinking the past weeks. It comes hand in hand with not feeling well. For me, when days are difficult, I find that TV and reading are also difficult, so I spend my hours laying in bed just thinking. Or if I am well enough, outside thinking. If I'm not able to get to places like the ones in the pictures above (Jay Cooke outside of Duluth), then I have a favorite chair on our deck that overlooks the St. Croix River Valley. I never tire of the view; my ocean of tree tops.
I'm coming to understand something on a much deeper level. Not really an "Ah-ha!" moment, but more a series of smaller "Oh...yes..." moments that are bringing me to a very peaceful place. It's funny how these moments - the big ones and the small ones - are never really something "new". They are usually thoughts that we have intellectually known for a lifetime, but in that moment we are graced with knowing them in the depth of our being. I would almost say that we go from "knowing" a fact to "feeling" a truth. We are awakened.
This is what I have come to "feel" these past weeks - the only life I have to live is here, in this very moment. I can not live even one millionth of a second ago. It is gone. I can not live one millionth of a second from this very point in time. It is not yet here. What I have done, or what I plan to do in the future, is not living. It's a hope, it's a regret, but it is not now. So often, we forfeit the joy of "now" for both regret and hope. If I am sad or angry or bitter in this very moment, all the hope or regret in the world will not be able to go back in time and change this sad moment to a better one. But yet, I have let it pass. This moment of life. It's gone, never to be relived. Why then do we spend our days hoping for a better day. I can not live the future, but I can LIVE now. Don't get me wrong, I think hope is a wonderful thing. And yes, hope can bring me joy this very moment, and that is a good use of hope. What I am talking about is more of a misdirected hope. One that allows us to give excuse to our ability to experience joy right here, right now. And before you know it, a week, a month, a year, 10 years, a lifetime has passed - waiting for a better day.
So then, when this current life seems less than favorable to us, how in the world do I find joy in the present moment? In the midst of pain, of illness, of tragedy, or even our own impending death? For Christians, the good Hope plays a very important roll in the ability to bring joy to this moment in time. I believe, personally, that is the only true use of hope. Hope in anything else seems to be completely misdirected. But, for the sake of what I have been thinking about these days, I am going to write a little bit about the nuts and bolts of life, not so much about theology. More about "how" the wheel turns and not "who's turning it"!
For me, this thinking on things, has brought my very chaotic and busy life to much simpler place. I feel like I have placed all of who I am and what I know into this big sifter. The important pieces falling down into yet a smaller sifter - and so on, and so on... Until I am left with this handful of very important pieces. A handful of pieces are much easier to sort through than thousands of details, complications, emotions, objects, what-ifs, could-have-beens... I asked myself very early on, "what am I holding on to, and why?" It was really the first step for me. And believe me, at this point, I had still, a very large box of "me". But I was getting there.
Eventually, I began to wonder about things like: how do I feel joy? what is peace? why do I suffer? how can I keep smiling? what makes me happy? what do I do with anger? The answers I found to these questions have come in the context of a very long and still continuing journey. One that I will never "arrive" at, but will become easier with each step forward. I won't use this space to give every detail. At least not at this time. But there have been a couple of very big realizations that I would really like to share with you.
I have learned that our perception of things can bring us great, great suffering. This is a realization that comes from my own experience and was an "Oh...yes..." moment after reading Being Peace by Thich Nhat Hanh. I have often used the following example with my daughter's. I think we all go through this, but for some reason, it seems more prevalent with women, and especially in the teen and young adult years. I can see it in their faces. I ask what's wrong, and I may get something like this as a response, "I am so fat. I hate my complexion! I don't look good in anything. Please let me stay home from school. Please!" I can see how truly miserable they are. How hopeless their situation feels to them. And there have even been times I have worried about them becoming seriously depressed. But maybe this time, they manage to muster up enough strength to go to school. Eight hours pass and in walks the most energized, bubbly, self-confident teenager a mom could ever hope to have. I have taken that teenager, walked them into the bathroom and said, "Tell me what is different about the girl in the mirror right now, from the girl in the mirror this morning. In fact, this 3:30pm girl has greasier hair, a shinier nose and maybe even weighs three pounds more than she did this morning. WHAT has changed?"
Our perceptions include our ideas about reality. I can be walking in a dark basement, see a snake, and become so frightened that I cause myself to almost have a heart attack. Someone could come along, offer me a flashlight and I could realize that the snake is actually a rope. In the blink of an eye, I could be laughing with tears running down my cheeks, realizing my silly mistake. What has changed? My perception of reality. What I THINK I know, can cause me great suffering. "God is angry at me", " I have done something wrong", "No one cares for me", "She said that comment to hurt me", "The doctor does not care about me", "I am not strong enough", "I am a failure", "I don't work hard enough", "Something bad will happen if I don't...", "People will think less of me if..." and most often, " I will not be happy if...".
What perception of reality am I holding onto as truth? Another example of this from Thich Nhat Hanh. He tells the story of a Cambodian man who lived with his young son in a small hut. His son was all he had. One day, after retuning from his work, he found his village to have been burned down by bandits. When he reached his hut, all that remained was ashes, and within the ashes were the bones of a small child. The father beat himself, pulled his hair out and cried uncontrollably for days. He then gathered up the bones of his child and put them in a bag. He moved to a new village, but wherever he went, he carried those remains with him. One day, around midnight, there was a knock at his door. The man's real son had actually been taken by the bandits and had escaped. Now he was knocking at the man's door yelling, "Papa, it's me, your son! I have come home to you!" The man had become so attached to the idea that his son had died that he told himself that this was a horrible prank by the village children because they thought he was crazy. So he didn't answer the door. Eventually the man began to yell, "Go away!!" over and over again. The boy left, never to return. He could not imagine what caused his father to stop loving him.
We get so caught up in what we think we know is our truth, that we don't know truth when it knocks at our very own door. And the only way we can prevent this from happening is to be completely open to what this moment in our life is telling us. Not dwelling on the past, not wishing for the future, but listening to the truth of this one moment in time. For me, I have found that everything I need to be happy is right here with me, in this moment. It's a connection with my world and my life that I have never felt before. Everything big, becomes small. Everything small, becomes very big. And joy comes to me on a ray of sunshine, or the smell of a pine needle, or the laughter of my children, or the wind in my hair. It comes from within and flows out. And nothing - not illness, not money or the lack of it, not even bandits can take away what comes from within me. It's a truth I feel from the depth of my being. It is freedom.
I wish for you peace in this very moment.
The latest from Theresa...
Well, not the best, but definitely moving in the right direction. I woke up this morning and was at least able to shower, keep breakfast where it's suppose to be and put in a few loads of laundry. Baby steps towards feeling better, but I'll take them none the less!
For now - I'm staying home!
Thanks for all the emails and facebook messages!!
The latest from Theresa...
Give it a second...you'll get it.
I had the greatest intentions of writing you the best update. I've been doing some really good reading and a LOT of thinking - which usually leads to pretty good writing. But leave it to this wonderful illness to have no regard for even the best intentions. The past three days have been pretty crappy. Hence, the T-shirt du jour. It just makes me feel better.
I had a wonderful day last Saturday. We spent the day in Waconia with my daughter Aleela, her husband Keith, my folks, Keith's family and a few good friends. We have now made it a tradition to attend Nickel Dickel Days in Waconia. The weather was perfect and I was feeling pretty good! Not sure if it's the fact that I was out in the sun more than usual or if it's a combination of new medications - or both. But by Sunday I was completely down for the count and today is the first I have spent any amount of time upright. We are giving it one more day and then heading to the U of M. I have been in the hospital so many times, and I am confident that I can rest much better when at home. But even I know that things left unchecked can not be so good, so tomorrow is the deadline. What I'm hoping for is that things turn around a bit and I can wait until next week, when I already have appointments lined up. Ha! Best made plans...
I hope you are enjoying this amazing Fall. Taking the time to smell the air, listen to the wind in the trees, watch the colors come... these are some of the gifts this disease has given me. Being Awake to life.
I wish the same for you!
The latest from Theresa...
Good grief. Just re-read my last update... technically heavy, for sure. Not even a picture! So I decided this time I would post a picture from our summer vacation - in honor of the summer that just disappeared before my very eyes! Wow, September 1st already. Kids are off to school and it smells like Fall outside. I am a true Midwest girl, but the older I get the seasons seem to change over faster than pancakes on a hot griddle. You barely get a whiff of all the good smells and it's time to "flip things over"!
This picture is of Aleela and I, by the way. She's our oldest daughter and the embodiment of all things beautiful and good. She is by nature, the joy of our family. She's intelligent, professional, compassionate and FULL of the driest humor! When she comes home it's like plugging our family into an outlet. The energy just flows. I love her dearly and having her all to ourselves for an entire week on an island was nothing short of heaven. Thank you Aleela, for giving yourself to us!
So, what to tell you about the past two weeks...
I did head back to Mayo Friday August 20th and Monday August 23. Good visits, both of them. Friday was a meeting with the nutritionist and some education in regards gastroparesis and dyspepsia. Very, very helpful. Then Monday I went under general anesthesia in order to complete the stomach and intestinal biopsies. I won't hear back on those until I actually meet up with the doctor on September 7th. On that day I have a couple more tests and then see all of the doctors for one last consult. It's been very beneficial for me to get these second opinions, but it's also been very expensive and time consuming so I am anxious to wrap things up and get back on track at the U of M.
The past week has been a little more rough than usual. Not really sure why, but I'm hoping things will turn around soon. On top of that, Monday is the day I take my dose of Methotrexate (a type of chemotherapy used for autoimmune diseases) which always makes me sick. And Tuesday I got my infusion, which also makes me sick. Needless to say, I'm not venturing far from the bathroom or the bed! The good part is that usually within a few days I have my BEST days. So that is what I am setting my sights on!
There has been a lot going on in regards to my disability. I'll try to give you a brief update, mainly because these are some difficult days for me and I could use all the positive energy you can send my way! To make a long story short....
Once I got approved for Long Term Disability through my employer, the insurance company decided that I was disabled enough to be eligible for Social Security Disability. So they mandated that I apply. The state has been holding my job for me while I have been on medical leave. It does not make much sense to hold the job of someone that is applying for SSDI, so that set in motion what I like to call "the beginning of the end" for me at the State. Once that process started, I was mandated to apply for my early retirement so that my reason for leaving would be "early retirement based on disability" and not "termination". Not only is all of this a paperwork nightmare (combined with the unending request of forms to be completed by doctors), it's quite difficult for me emotionally. Most days, I handle things pretty well. But every once in a while I'll get a phone call that just hits me wrong and I find myself having to work through things again. Sometimes it's a pretty simple call - like being asked to return my badge for work. Small request - big punch. It's all part of the grieving I need to do. And in the end, I am always left reminded of all that I have to be thankful for, but it's work nonetheless and some days it comes slower than others.
I believe my last official day will be sometime in the end of September. My medical leave status is up on September 16th. Not sure if that's the actual end date, or the day they change things in the computer and send me a nice letter. I'll let you know, I'm sure. What I DO know is that I loved my job and even more so, I love the people that I worked with. They have been beside me throughout some of the best days and worst days of my life - never failing, always loving and as constant as the night. I'm a better person because of them.
This has been quite a journey, that's for sure. I'm blessed to be traveling with so many beautiful people.
The latest from Theresa...
There is NO place like home! Due to some scheduling issues, I was able to come home last Thursday from the Mayo Clinic. The hope is always to complete all of your appointments in one visit, but unfortunately we had to schedule things out a bit. I am home for a week and then back to the clinic this Friday, August 20th. Then home for the weekend and back on Monday, August 23. Then home for a week and back on Tuesday, September 7th - for the last time! (famous last words!!)
It's been a very good experience for me, but extremely tiring, both physically and emotionally. For the most part, my diagnosis have been validated by the doctors I have seen. Which include rheumatologists, neurologists, urologists, gastroenterologists and dermatologists! I wanted two things from this experience. First, to make sure that we were on the right track and are not missing something. And second, to make sure that I am undergoing the best possible therapies for my particular situation. Both of those things have proven successful. I would be lying if I did not say that deep down somewhere I did not hope that there would be some sort of miracle pill or solution at Mayo. But knowing that two of the best places in the world agree about where I am at is very comforting and has given me a definite peace of mind.
There have been some new secondary diagnosis, which by knowing and dealing with will make my daily life much more comfortable. One of my more difficult "problems" is with my digestive system. It's extremely frustrating and causes me a lot of discomfort. They determined I have gastroparesis, dyspepsia, IBS and pelvic floor dysfunction. Basically, my entire digestive tract has been "reset" and does not move things through correctly. The good thing is that Mayo has a lot of educational opportunities for me and part of that is having my own nutritionist. Changing how I eat, what I eat and when I eat will hopefully help all of these conditions.
Another issue that I have due to the neuropathy is being able to fully empty my bladder. This problem will not be "cured" as well, but with education and some new treatments, I should feel much more comfortable and struggle less with bladder and kidney infection.
And lastly, due to my long term steroid use, they determined that my adrenal system is not functioning correctly. Bummer news, but by understanding this I can take appropriate medications that will help me with issues like fatigue and fighting illnesses.
I'm still seeing neurology and undergoing tests so we can determine to what extent the neuropathy is affecting my autonomic system. By September I should have some answers as well as more information on how to improve my quality of life.
So....no magic cures. No miracle pills. But a lot of peace of mind, that in the end, make accepting these days much easier. I am very thankful for my my doctors at the University of Minnesota. They have done a great job and the fact that they were willing to refer me to Mayo is not something I take lightly. It's a good, good place.
On the "home" medical front - I continue to take IVIg infusions - which are going great. I think maybe we are finding the right "mix" of medications - finally. It meant giving in to the use of some pretty strong drugs, but so far, so good. And I am definitely feeling a positive affect.
As I sit here, wrapping up, I am lost for new words to tell you how thankful I am for you - my dear friends and family. Everything always seems so inadequate. In the quietness of my contemplation, Emma popped in and said, "Tell the world I said hello." For some reason, that seems to do the trick right now.
Hello world! Emma says Hi!
The latest from Theresa...
I love dreams. Good ones at least! The reoccurring dreams of my childhood - bears in the house and no place to hide - those ones I'm glad I don't have anymore. Or the ones that send you screaming through the hallway only to run smack dab into a terrified mother...those, not so much fun. (for me or Mom!) But as I have grown older, and even more so in the last five years, I have come to enjoy the process of listening to my dreams. There is tons of information out there in regards to deciphering dreams, so one has to be selective in their "believing", but some of it really makes sense - at least for me.
One of the things that I have learned that has always stuck with me is the concept of being in a car in your dreams. Some believe that the car represents your life. So when my kids tell me they had a dream about being in a car, I ask questions like... "Was the car on a road?" or "Was the car ready to crash?" or "Were you struggling to stay on the road?" or "Was the car heading for water?"... and most importantly, "Who was driving the car?"....
Well, if I could take a picture of my dreams these days and post it on the web, the above photo would probably represent things most accurately! Taken while we were on vacation, this photo is a common site with our dear pooch Maggie. The minute the car door is opened, she finds her way into the driver seat. And she has been known to sit there for hours either in our garage or in the driveway or wherever we might happen to be parked. Like everyone else in our family...she likes to be in control!
I have never had Maggie driving the car in my dreams. But you know what - I sure wouldn't mind if I did. (especially knowing you don't really ever DIE in your dreams!) If taken literally - the deciphering would be something like this...
"Your life is currently under the complete control and direction of your dog. Your dog has the attention span of of an ameba, and therefore has no recollection of the past and is only concerned about your enjoyment of the here and now. Your dog has decided that it's best that your life not be in motion and that you should just be content sitting IN your life. Your dog has complete and utter unconditional love for you. So your dog would like you to know that while in this life, she will never leave your side and that no matter what happens, she will guard YOUR life with her her life. And if you should decide to let life go for a bit - and run and chase squirrels, she would be happy to play with you. Running and laughing and licking and playing until you both fall exhausted in the grass. And when you are ready to sit back down in life, she will again jump into your life, sitting tall beside you, letting you know that everything is under her complete control. Your dog will not let you down."
The past few weeks have been absolutely crazy - for a healthy person, let alone a girl like me. Hours of preparation for Long Term Disability, countless doctor appointments, the demands of the Social Security Disability "people", all that it takes to spend a week of vacation on an island with your family, gobs of company, a 50th wedding anniversary party (congrats Mom and Dad!), preparation for a week at Mayo... and now, actually being at Mayo. In my wildest of dreams, I did not picture this.
But here I am. Getting the best care in the world and contemplating the idea of my "life". Where I'm at, and more importantly, where I'm going. For now, I'm just going to sit awhile...in the driveway, and let the people and animals that love me run the show.
I do love dreams.
The latest from Theresa...
Not quite sure how this update will go... I usually have at least one profound thought that has been with me between when I last updated you and the present. But to be honest, it's been a bit of an emotional week for me and I think this update will be "just the facts sir"!
First of all, the IVIg went well. Anna and Evan took me, which gave Dave a nice break and gave me some time with the kids. For 17 and 18 years old, these two kids have more maturity at their age than I had all together in my first 30 years. I am SO blessed with wonderful children. The actual administration went smooth - no allergic reactions. A little one from the pre-meds that they give me, but nothing to write home about. That was last Thursday. Then for the next couple of days I basically ached all over - which is typical. I call those my flu days. But by the weekend I noticed a nice difference. For one - my headache finally went on a little vacation. This ridiculous headache has been with me non stop for weeks on end. Finally, a reprieve. Not a huge night and day change, but I definitely felt the dose worked. I have been in contact with Dr. Walk's nurse every couple of days since then and depending on how I "react" they will decide how often I get the treatment. Definitely not weekly like I was before.
I wrote in the update before last about our good news with Long Term Disability Insurance. It was a welcome relief - to finally be done with the horrific application process and to finally feel some financial relief. The financial relief continues.... but the emotional relief was very short lived. The "LTD powers that be" have decided that I am Social Security Disability (SSDI) "eligible". In a very large nutshell, what that means is that they are mandating me to apply for SSDI. They immediately assigned me a law firm out of Massachusetts and gave me 21 days to apply. If I don't apply, they promptly deduct my LTD payment by what my SSDI payment "would" be. Which basically would make my payment a big fat $0. The goal... make Social Security pay me instead of my long term disability insurance company. Any retroactive funds would then go to pay the attorneys and pay the LTD company back. This can take up to two years...with lots of appeals and hearings.
This is a double whammy for me.
Number one, I don't WANT to be disabled. Period.
Number two, in my perfect little plan....I use this time on LTD and get better and go back to work. Work has been extremely supportive and has made every effort to hold my position for me over the past two years. My "we have to know what your plan is" date is around September 1st. That was doable for me - I thought. But here I am in July, not feeling very good and applying for SSDI. I can't very well expect my employer to hold onto my job if I am applying for social security disability. As I told my supervisor...I just can not reconcile that one in my head, as I'm sure she can not as well. I dearly love where I work and what I do. Let alone the simply amazing people that I work with. Who are FAR more than co-workers. These are the most dear friends I have ever had - ever.
So, Number two...I don't WANT to give up my job.
I'm smack dab in the middle of everything this week. On the phone and swapping emails with work and completing hours of interviews with my new attorney's office. As well as preparing for and applying for SSDI. An emotional rollercoaster. The kind of ride where it takes your breath away and all you can do is sit silently - waiting for the ride to be over. At this point - I'm just working on breathing. Re-reading what I wrote on 6/7 and trying with all my might to "flow gracefully".
Next week I plan on being with my family up north. It will do me good to get away from computers and phones and doctors and the normal routine...and just.....oh, I don't know....let them all wait on me hand and foot? Ha! At least that's "my plan" for now...
The latest from Theresa...
Photo by David Johnson, Star Prairie Gallery
There is NOTHING like the smile and smells of a baby! For me, everything wrong with the world seems to disappear when you're caught in the wonder of a child. Thank you Nicole and Chris for giving me this moment!
Summer is so crazy...in a good way. The longer days seemed to be filled to the brim, and I wonder how we manage in the winter. How does everything get "done"? I'm thinking that in the winter we expect less in the area of actual accomplishments, and probably get more done in areas such as....well, SLEEP! I love the busy-ness of it all in the summer, and I especially like the distraction. It's good for what ails ya! But for someone with Lupus, there is a definite down side. For one, the sun. It seems to be my worst enemy these days. A bit too much of it (and it doesn't take much) and I'm pretty sick. Hives, joint and muscle pain, and a good sized headache are usually the consequences.
Another quick trip to misery is not getting enough sleep. If I have recognized anything with this illness, it's the necessity for sleep. Letting myself get run down in the least can lead to a flare very quickly. So with over half a day of sunlight, it's a conscious effort on my part to get myself to bed. My opinion of that business.....UGH! But I'm learning...sometimes the hard way!
On the medical front - Mayo continues to "review" my records. Those doctors may be the best there is in medical care, but they sure are a bunch of slow readers! I'm thinking that's a good sign. I obviously didn't get put in the "eminent death" pile! ;-)
At my last visit with Dr. Walk we decided to try the IVIg again. It was very helpful before I "crashed" and got sick (hospitalization last March). The thought is that we need to find the right balance. Just enough to be helpful, yet not throw my body into some sort of rejection mode. So today I will be receiving my first infusion this go-around. Because of the possibility of allergic reaction, I will be receiving these in the new Infusion Center at the U. Once things seem under control then we will look at the option of having them at home again. I'm both excited and nervous about this. Hopeful because of the positive past experiences, yet worried about finding that right amount.
So keep your fingers crossed, and I'll do my best to update you as to how things are going.
As always, thank you so much for being here with me. And I hope that you are all filling your days to the brim...and then some!
It's about 9:30pm and I am exhausted from the day, but I can not lay my head down until I share my news with the family and friends that have been beside me throughout this journey. Today, about 4:15 this afternoon, I received a phone call from Hartford Insurance letting me know that I have been approved for disability. Not a statement that would have ever seemed like good news two years ago, but at this point will mean the lifting of a tremendous financial burden off the shoulders of our family - and especially off the shoulders of my beloved husband who has somehow gracefully carried us through these difficult days. Never once giving into fear, and always directing our thoughts to the good that surrounds us. Thank you David - you are our rock.
And thank you to all of you who donated through this website and through the benefit. Your kindness is exactly what got us to this point. We COULD NOT have done it without you. Because of our family and friends, bills got paid, we stayed in our home, and we were able to concentrate on my getting well.
As David says, tonight we will lay our head down on a very soft pillow.
I love you all,
Hi friends and family,
Just a short update here to let you know a couple things. First, I had a fantastic visit with the good Dr. Walk last week. I can not say enough in favor this doctor - I have never met anyone like him. He's not only a fantastic doctor, he's a good person and I feel very fortunate to be under his care.
He is pleased with how things are going for me, but remains very hopeful that things can be even better yet. On July 1st I will go in for a number of tests to get some new "base-lines", and then on July 2nd I will meet up with him to discuss some new treatment plans. He believes there are other treatments out there that could possibly be more successful and that, in his words, I can "not only feel good", but I can "feel GREAT!" His optimism was beautiful music to my ears.
The other good news in regards to this, is that my Rheumatologist is leaving the U of M. YES, you read correctly!!!!!!!! If you look back at my update on 5/17/10, you can recall how "stressful" that relationship has been for me. This is a very pleasant way to resolve this issue and I look forward to dealing more with Dr. Walk until a new doctor can be found. Can you feeeeeeeel my joy? ;-)
And lastly I should let you know that my records are now in the hands of the Mayo Clinic and they are reviewing them to see first if they will accept me, and then if so, to set up all the appointments with the various departments that I would need to see. I'll let you know as soon as I hear. I do have to say though, that it's a much easier wait now that I am back working with Dr. Walk! Hope is such a wonderful thing! It's nice to share it with your doctor!
That's the news so far. Enjoy these beautiful summer days!
Photo by David Johnson, Star Prairie Gallery
Sonnets to Orpheus, Part Two, XII
by Rainer Marie Rilke
Want the change. Be inspired by the flame
Where everything shines as it disappears.
The Artist, when sketching, loves nothing so much
as the curve of the body as it turns away.
What locks itself in sameness is congealed.
Is it safer to be gray and numb?
What turns hard becomes rigid
and is easily shattered.
Pour yourself like a fountain.
Flow into the knowledge that what you are seeking
finishes often at the start, and , with ending, begins.
Every happiness is the child of a separation
it did not think it could survive. And Daphne,
becoming a laurel,
dares you to become the wind.
About four days after my last update I was traveling across the Stillwater bridge on my way to receive a big dose of nuclear something-or-other for a whole body scan. Tired of the drive, and frustrated with yet another intrusive test, I found myself lulled by the rain and somewhat contemplative about the days events. The rain was steady, yet soft. No wind. And as I came down the hill and neared the bridge I could see shadows of strong current moving down and across the St. Croix, like velvet looks after you have swept your hand across it. The rain was simply disappearing into the water with each drop - no splash, no ripples....just disappearing.
I thought of my favorite quote from the Greek philosopher Heraclitus:
"No man steps into the same river twice, for it is not the same river, and he is not the same man."
Years ago, for a class I took, I had to pick something in nature that represented myself. At the time, I was struggling with some complicated identity issues and felt that the river and I had a lot in common when it came to undertows. I've since mellowed in my quest for understanding who I am. Not because I have "arrived", but because I now understand that no one ever arrives. I will never finish the statement, "I am......" because, like the river, from this micro-second to the next, we are are never the same. The present is swallowed up somewhere in the middle of the past and the future. And no more can we step into the same river twice, than can we stop this change that is within every one of us. It's as natural as the very cells that make up our bodies. Changing with every second that we are alive - whole new bodies, filled with whole new cells. We are constantly changing, and we are constantly new.
Why then do we nurture this fixed idea of who we are? We harbor notions of what is good for us and what is not and try to organize and strategize our lives accordingly. Yet life does what it wants, with scant concern for our pretences, so Rilke, in his sonnet above, urges us to look beyond the parade of circumstances and events to the fundamental and natural fact of change itself. In wanting or accepting change, we are aligning ourselves with truth - with what is already happening anyway! We "flow" rather than self consciously make our own way. And in that flow, the sense of who we are and where we are going becomes malleable and fluid - more responsive to the circumstances around us instead of bound by fixed beliefs and agendas. In this flow of change, self forgetting happens and a deeper remembrance can emerge - a remembrance of being forever joined to a greater life - a greater RIVER. Not as another idea or concept of who we "are", but as a lived experience in the moment.
The more we cling to the old - the more hard or rigid we become. And the more hard something is, the more susceptible it is to breaking, which is why it is so much better to allow what is happening, to flow with it like water - and to come into another life image gracefully.
I'm working very hard these days to flow gracefully in this life. Accepting or wanting change, means accepting those things that are no longer. Letting go - without splash - without ripple - disappearing, becoming one with a greater river.
Every happiness is the child of a separation
it did not think it could survive. And Daphne,
becoming a laurel,
dares you to become the wind.
THERE she is...Spring!! What a beautiful, beautiful weekend. I've noticed that about half of my updates begin with some sort of reference to the weather. I think I have always been that way - affected or moved by the weather. But it seems that when you are not well, for some reason it has a bigger impact. Maybe because sickness slows you down to a point where you actually pay attention. Anyway - it was beautiful.
I did not post right away after my appointments last week - on purpose. (versus being too sick or tired to!) My visit with the Rheumatologist was...difficult. A little background on this subject might help...
I have always been extremely impressed with all of my doctors at the U. Their care of me has been beyond my expectation. But as things go, not every relationship can be without it's difficulties. And for some reason, my relationship with this particular doctor has always been a little strained. I have seen her maybe five or six times, and with each visit I go in with the hopes of improving things and leave with the frustration of not being heard or understood. I am not quite sure if it's me, or her...or a combination of both, but it does not seem to be getting any better. So I told myself that if, during my visit, this was still an issue, I was going to request seeing another doctor. Mainly because this physician is the primary doctor that will be in charge of my auto-immune diseases. And I believe that it is important that we share a common goal and that I feel as though this is someone with whom I can communicate easily. Right now, that is just not the case.
There are almost as many ways to treat auto-immune diseases as there ARE auto-immune diseases. What works for one patient may have little to no impact on another. I am not content with my quality of life at this point. Don't get me wrong - I am much, much better than the person you read about even a year ago. And I am so thankful that I am not laying in hospital bed right now! But I also know that it is very possible for me to be better. I read every day about people that go into remission and live normal lives with with these diseases. My hope is that I have a physician that is willing to explore these options and work with me to bring me back to a quality of life that includes more activity and much less pain and fatigue. And if I'm lucky - going back to work! NOT a physician that is content with "what is" and only wants to treat symptoms. Which usually includes MORE pills.
So, I mustered up all the self-esteem I could and actually spoke up for myself. I can not tell you how difficult this was for me. This doctor is very intimidating and lacking in "bed side manner". And as I imagined would happen, she was quite "put-off" by my discontentment. There was no discussion on how to remedy the situation and she agreed to refer me to Mayo. Which, I guess, in the end, may turn out to be a good thing. But the thought of going outside the U of M - and all the work and time away from my family that will entail - I am not looking forward to it. The fact still remains, I am not content living the way I am. I KNOW things can be better. And the only person that can fight for this belief is me.
On a much more positive note, I did something really, really good for myself this past weekend!! I have reconnected with a dear friend of mine from my growing up years. Carolyn and I met when we were in 4th grade and were friends all throughout my school days. As happens quite often, we lost contact during the "raising our families" years and have now actually found the time and energy to seek each other out. Carolyn is an amazing artist. She just recently acquired a fantastic studio space on Quincy Street in Northeast Minneapolis. As a last minute idea, she invited Dave and myself to display our work (my paintings and his photography) in Art-A-Whirl, where artists open their studios to the public so they can buy directly from the artist. I have not been able to paint much over the past two years due to all that the illness affects - but I did have some art on hand from before. Some of it had to be actually taken off my mother's walls, but she was more than happy to do so. And let me tell you - it was a WONDERFUL experience. Even though it was a bit much for me physically, it was well worth it. And Dave conveniently parked the van right out front so when I needed to lay down I could. It was perfect! So that is where the picture above came from!
Much of getting better seems to involve putting my mind in the right place. I am ever more amazed at the mind/body connection and all that can be done to improve it. My goal this summer, along with finding a new rheumatologist, is to work on that connection. This weekend was a great first step.
Thanks for sticking with me on the journey -
Holy Cow!! What happened to Spring? Even the dog doesn't want to go outside any more. I open the door in the morning and she just sits there, as if to say, "That's ok, I'll just wait." I'm right there with her on that one, but it seems she's going to have to "hold it" for quite some time!
This update will be short. I have had a rough couple of weeks for some reason. If I had to guess, this would be considered a "flare", and not a very pleasant one. Low grade fevers, swollen glands, painful joints and lots of body aches and pains. It seems I can get a couple hours out of each day where I function pretty well, but the rest of the day - not so good.
I have an appointment with the Rheumatologist tomorrow, so maybe it is just a matter of adjusting some medications. The onset of this seems to have arrived on the heels of my steroid tapering, so it might just be that I need to increase that dose again. NOT my favorite idea, but it sure seems to work. The side effects of steroids are just so nasty.
I'll post an update after my appointment tomorrow. I sure am thankful for all of you...out there...
For the past year and a half, I have been on the receiving end of more acts of kindness and grace than I could have ever imagined in my wildest of dreams. It truly has been the most profound "lesson" I have learned throughout this illness. And the thing that has humbled me the most is the quiet, committed perseverance of those who have stayed with me along this journey. When I search the recesses of my own heart, I find myself clearly lacking in comparison to the friends and family that surround me. It's a sad realization for me, but I would not have been half the friend that those of you are. Don't get me wrong - this is not about self degradation, it's about self realization and the blessing that comes from lessons learned, gifts given and the human soul. Gifts given to me that reach beyond their physical appearance, beyond paper and pen, beyond monetary relief , beyond anything that I believe the giver had ever intended. These are gifts that touch the core of who I am and take up a place in my soul forever. I will not forget.
I've tried very hard in this update to not mention names when it comes to gifts. For a number of pretty obvious reasons - one, there are too many of you. Two, you have done too many good deeds for me to even keep track of. And three, with my memory these days, I would surely leave someone out and end up hurting feelings - which is the absolute last thing I would ever want to do. But this week I received something that I can not leave unmentioned. And the timing of this gift could not have been more perfect.
I'm going to be honest in telling you that the past month has really been a struggle for me emotionally. I think there are a lot of contributing factors, but it took me a little while to figure out what some of the big ones really were. All I knew was that it was Spring and instead of feeling more energized, I was actually slipping into a sort of depression. And then, with the help of my health psychologist and a lot of journaling I started to put the pieces together. What I began to figure out is that I am feeling a very deep sense of loss. Being sick came much easier in the dead of winter when the rest of the world (or at least my family) was eager to hunker down with me and go to bed at 8:00 in the evening. But these days bring yard work, hikes in the woods, race registrations in the mail, Spring cleaning, garden planting, vacation planning, early rising and sunsets at 8:30. All things that I would be filling my days with! All the things that bring me joy and the feeling of starting fresh after a long winter. But instead, I find myself on the inside looking out. Wishing to be out there with the rest of the world. And finding myself just a little bit sad that I'm not. Combine that with the horrendous application process of Long Term Disability and self-esteem gets a run for her money!
This week, in the mail, I received a DVD from my friends at work. The same friends that made this website possible. The same friends that held the benefit for me in December (which, by the way, has kept us afloat financially until LTD kicks in). The same friends that I spoke of at the beginning of this update - people with unending compassion like I have never seen before. And let me tell you... this is the greatest video EVER! Thirty minutes of pure goodness. As my family and I curled up on the bed together to watch it - we were all overwhelmed with emotion. We laughed, we cried, we gasped, and then we laughed some more until we cried! Scene after scene, filled with the most beautiful music, faces of DHS's greatest employees (of course) and messages both extremely humorous and extremely kind. It was obviously an endeavor that took a lot of thought, a lot of time and the patience of those who would have rather "just kept working"!
THIS is one of those gifts that has implications far beyond what I believe the givers had ever really intended. Yes, it brightened my day. Yes, it made me laugh. Yes, it made me want to get back to work even MORE! Yes, it felt good to know you are all still there and that you have not given up on me. But it did so much more. Some of which I don't know if I can even put it into words. Do you, who do these things, even realize the example you have been for my children? For teenagers to be moved to tears by your love for their mother - time and time again - is no little thing. This year and a half of your unending care for me has given them a picture of humanity that I could never have given them. I see it in their faces, I hear it in their conversations, I read it on their Facebook pages.
And for me - well, it was just what the old self-esteem needed! To remember that I belong to a greater purpose. To remember that I am a good enough person to have the BEST friends in the world. To remember that I accomplished a lot of good things in my life and I'm still accomplishing. To just remember...
...and to never forget.
I love you all!!!
Sunday visit with my dear friend of 25 years, Tina Ben Ari.
I have learned a lot of things over the past 18 months...
I've learned that life can change in an instant - and that is not just a cliché used by old people. I've learned that the human body has limits, and we don't get to decide what those limits are. I've learned that hard work is good, but rest is better. I've learned that despite what we think we know about ourselves, we are clueless when it comes to understanding our true capacities; and it's generally the most difficult days of our life that bring that gift. I've learned that children are often better adults than adults are. I've learned that instant gratification is exactly that - instant. I've learned that there are people all around me that are suffering, and I never knew it until I actually listened. I've learned that when you are sick - a tidy garage, a new car, a basket of clean laundry, an appointment timely kept, a savings account, a new show on TV, the latest product from Apple, an honor roll child, a busy schedule, a promotion....none of these things can make you well, and the only thing that really matters are the people that you love.
I'm thankful that I am learning this lesson. And even more so, I am thankful for those of you who are my teachers.
It's been a pretty good ten days since the last time I updated. My battle with the kidney infection was a bit relentless and then I ended up with the cold/flu. But this week seems to be much better and after a busy three days of doctor appointments, I get to spend Thursday and Friday at home! A little trivia to celebrate....It's been a month since I have been in the hospital and things seem to be trending towards the better! Yes!
Happy Spring! I do believe it's actually here to stay!! Don't you just LOVE the smell of it all?
Some good updates....
I had a few good visits since the last time I updated. One of them included a visit to the ophthalmologist. The disease takes it's toll on my vision as does one of the medications I am on - ironically. So I have to make this visit every six months to make sure things are not getting any worse. And by golly, things actually IMPROVED! My vision was better and there was not nearly as much inflammation present as there was at the last visit. It was so good to hear positive news! The next appointment was with the dermatologist. One of the more annoying symptoms of lupus is the recurrence of hives. I assumed there was not much that could be done for this, but actually there is a little tiny pill that I can take every night that helps dramatically with this problem. It does cause some "dry mouth" issues, so I don't take it every day, but when I need it, it's there. And lastly, I had a very good check-up with Dr. Walk. We have really fallen into maintenance mode and are honing in on how to make my quality of life as good as it can be. This involves tweaking medications, which seems to be going well. As far as the neurological check, most things have remained the same - no better, no worse. There is some sign that my central nervous system is being aggravated right now, but the symptoms are tolerable at this point. In fact, we discontinued one medication on the basis that the side effects did not outweigh the potential good.
My biggest "complaint" these days comes from some more "normal" problems. I came down with a bladder/kidney infection early last week and have really struggled with getting rid of it. The first antibiotic did not cover the particular bacteria I had. The second one seemed to help at first, but now as I end the week it seems to be creeping back. And then Sunday I decided to pick up some sort of virus that has really knocked me for a loop. The typical sore throat, headache, aches and pains... but with my compromised immune system, it's not so easy to deal with. The little things can bring me down pretty quick.
So this week is all about resting and drinking lots of fluids! I do have a couple of appointments on Thursday, but if I'm still under the weather - they may get moved to the next week! I sure hope you all had a wonderful Easter weekend - it truly is a beautiful time of year.
Thank you for all the messages!!
All quiet on the medical front...or, almost all quiet. I've only had four appointments since the last time I wrote an update, which is significantly less than most weeks. In the reality of finding myself more in maintenance mode, I think this will start to prove as the trend. Which hopefully will mean less time in the hospital if I can just stay healthy! For those of you that want the scoop up front - I've been having some pretty good days (or partial days at least) this past week and I have been truly enjoying the break!
I mentioned a book I was reading a few weeks ago called Ethics For The New Millennium by His Holiness The Dalai Lama. Not a huge book - less than 250 pages. But my cognitive issues, combined with the fact that it's a read you have to "think" about, have prevented me from finishing the book in any kind of timely fashion. I read only a few pages at a time, take notes, and generally read the same pages again before I move on. But let me tell you, it's been worth it. Not a "religious" book by any means, but clearly very spiritual. And it's one of those books where the words resound in my mind daily like the unending echo's within the walls of an ancient cathedral. Little bits and pieces floating around and every now and then someone says, "Did you hear that? Listen...did you hear that?" It makes me happy - to remember. In a time when so many things seem to be lost, having even the slightest return - especially something I want to remember - brings a joyful contentment.
So I want to share one thing with you that seems to be sticking these days. At the risk of not doing any true justice towards this work, I'll pull out a small piece and hope that I make some sort of sense to you.
The Dalai Lama has an interesting perspective. Having been "made" a monk at a very early age (I believe the age of 7) he spent his formative years isolated in the mountain ranges of Tibet, separated from the rest of the world. He fled his homeland in 1959 and has since been a refugee in India. Today, he is one of the most sought after people in the world. His views rest on a foundation of experiences ranging from years of living in a "Third World" country to traveling and giving comfort to people in some of the richest most industrialized nations. In light of what he has found to be people's expectation of him, he says this, "Unfortunately, many have unrealistic expectations, supposing that I have healing powers or that I can give some sort of blessing, but I am only an ordinary human being. The best I can do is try to help them by sharing in their suffering." He then goes on to say, "for my part, meeting innumerable others from all over the world and from every walk of life reminds me of our basic sameness as human beings. Indeed, the more I see of the world, the clearer it becomes that no matter what our situation, whether we are rich or poor, educated or not, one race, gender, religion or another, we all desire to be happy and to avoid suffering."
Of course, the minute I read this my mind started to jump forward to...ok, sounds good. So, how do I do it? What are the nuts and bolts of daily life that make happiness and less suffering a reality for me? Religion aside, not for the purpose of making any sort of statement, but more as an addendum to religion (if need be) - what are some generic, one-size fits-all, techniques that help to get the job done? This is exactly what I feel this book does so beautifully. And after all of this lengthy introduction - what is the "small piece" that I hoped to pull out for you today?
I refer to the Tibetan word here because they have a term which appears to have no ready equivalent in any other language, though the ideas it conveys are universal. Often sö pa is translated simply as "patience", though it's literal meaning is "able to bear" or "able to withstand". But the word also carries the depth and breath of resolution. It's a patience that comes peacefully and without resentment. A patience that does not muster up frustration or resentment or even the concept of toleration. In contrast to this idea, I think of the patience I have had for my children when they were young. I remember when the girls were of toddler age and going for walk no longer included a stroller. Walking even one block took great patience. And I can be honest in telling you that it was not always a "peaceful" patience. But by all outside accounts, one would have looked at me and thought - "Oh, what a patient mom!" If you could have heard the inside of me, more times than not, you would have heard me...oh, say...counting to 10 or reciting some sort of scripture on patience! It wasn't always easy - even if it was successful.
The patience I am learning about here is the kind of patience that comes out of compassion for ourselves and for those around us. And the only way this type of patience comes "easy" is if it becomes our nature. And the only way something becomes our nature is if we practice it daily. Transforming our hearts or our minds so that our patience becomes "spontaneous" if you will, requires that we put this desire at the heart of our daily lives. Making every response and every action one of compassion. And before we can do this with anyone or anything else - we must first do it with ourselves. Out of this sö pa rises love, tolerance, humility, compassion - and most importantly, forgiveness.
That's my small piece.
Having made a short point really, really long - this is the piece (or peace) that "sticks" with me today. Through experiencing sö pa or patience with myself, I am released from the "regulations" of suffering. It no longer supposes it's constraints on me, and no matter what my physical situation is, I can be at peace. For me, these are pretty good nuts and bolts to build my days on.
I wish you the same.
The latest from Theresa...
Dog days of.....Spring? The best!
Feeling much better! As many of you already know, the past week has not been very pleasant for me. Monday was the start of some pretty rotten days and by Wednesday I was back in the hospital - but only briefly!! I think this is the first time ever I limited my stay to ONE night! Clearly the way to go if you have to go at all! To make a long story short, I over did it on the weekend, ended up with a nasty flare-up which affected my heart and had to spend the night on a nitro drip. Which, let me tell you, works wonders! I don't think we are still quite certain the exact problem. The assumption is that I had some inflammation around my heart (quite common for my condition - plus I have some weird heartbeat issues) and this lead to a very uncomfortable pressure feeling. After lots of tests, we don't know anymore than we already knew - but I sure came home feeling better than when I went in. That was a nice change!
My appointment with the Rheumatologist went well. Difficult, but well. I have heard now, from three doctors, that I need to do two things which I have been avoiding with all of my might. One, I have been adamantly against going on any type of medication for pain. I have good reason. I refuse to get dependent on pain medication due to the horrible experience I had last year with that. Also, I have wanted to limit the amount of medication I am on so that I have a clearer picture of what is causing WHAT. With new symptoms arriving daily it seems, I hate to cloud the picture with some odd side-effect from a new drug. But the point that the doctors are trying to make is that stress brings on flare-ups. Being constantly in pain is a stressful thing. If I continue on this path it will remain a vicious cycle of pain and flare-ups...and really, just a constant state of not feeling well. The doctor's get frustrated with my asking for help and then refusing. I guess I can understand that. (maybe....ok, I do) So I agreed to start back on a medication called Neurontin or Gabapentin. This is drug commonly used by epileptics as well as people that suffer with a lot of nerve discomfort. It comes with some undesirable side effects, but I'm not thinking about those today.
The other request is for me to see the U of M's Health Psychologist. UGH. I feel like I need one more appointment like I need a hole in my head. Seriously! But.....they're right. This stuff has been going on for 18 months now. I guess there is some possibility that it is getting to me. And these people are qualified in dealing with life long, chronic illness. Ok, there...I said it. I think that's the hard part for me - actually giving in to the fact that this is a life long thing and I may need some help figuring out what that means for me. Making that appointment has been very difficult. SO, I am going to make it right now - before I type another word to you all.
So my goal for this week - take better care of myself. And to do that, take some steps in the right direction. Which does not always mean doing what I want, or remaining under the assumption that I know EVERYTHING. (sure hope my husband is not reading this today!!) I get all wrapped up in this being sick business. And there are days that I get so tired of the journey and I just want my life back. But this IS my life, at least right now. So accepting that and moving forward can only be a good thing. Which, I have learned, does not mean giving up, it means fighting just as hard only in a different direction.
Hello from Me and Maggie!
If you look back at the picture I posted on 2/11 and compare it to this one.....BIG DIFFERENCE!!!! And I can not tell you how good it feels! This picture was taken early last Sunday morning. House quiet, sunshine on my face, good book in hand and my new best friend by my side - and I was so very thankful. For one, it's been over a month since I have even been able to read a book. With all the concentration problems I have been having, I would have to keep re-reading the same line over and over again, only to get down to the end of the page and wonder....hum, what did I just read? This day, Ethics for the New Millennium by His Holiness The Dalai Lama - simply wonderful book! I highly recommend it.
I had my appointment last week with the main rheumatologist, Dr. Hojjati. She is extremely difficult to get in to. Rheumatologist in general are an endangered species, and because she specializes in Lupus and Sjogren's, she is even more rare. So they fit me in over her lunch hour and we tried to squeeze what should have been a couple hour appointment into a little over an hour. I was grateful considering when she came in the first thing she mentioned was that she was short on time. Ugh. That's always a frustrating thing to hear when you have been waiting and waiting to see someone.
She has been out on maternity leave for the past three months, so the first part of the visit was catching up on all my visits with her colleagues as well as my hospitalizations since we last met. Then she went over the blood work I had done the preceding Friday. All of my antibodies were elevated and the results were showing Lupus now as my primary disease and not Sjogren's. The tests were so "out of whack" that she could not even interpret them. It was very confusing to her, but at least gave reason to my onset of extreme symptoms. Lupus can have a much greater affect on the brain than Sjogren's can, so that made sense to me. The good news in all of that business is that my MRI's and EEG's do not show any permanent brain damage. So it can be expected that what I am experiencing can potentially be reversed or at least made much, much better.
The plan is to keep me on the high dosage of steroids for three weeks and then start tapering down over a period of weeks. Discontinue the IVIg temporarily so that it can clear out of my blood. Ten days from our visit she set up another panel of labs to be drawn. These should be more "clean" as compared to the labs that were taken while the IVIg was still in my system. I then have another appointment on March 10 to visit with her about the results. At that time we will make a decision as to how therapy - or what therapy - should continue. Things will need to change if Lupus is truly now my primary diagnosis.
Blah, blah, blah, blah......
The most important thing - I'm feeling better right now. I still battle all my demons, and getting through the day is sometimes a fairly significant chore. But I don't feel like I am spiraling downward with no hope in sight. And I have enough in me to get outside, accomplish things at home, write an occasional letter and enjoy my family. And for this, I am so very, very thankful.
It might as well be - the alternative is just not as much fun! I used to dread Monday's along with all the other work-a-day world, now I "dread" them in a new way. The minute the garage door shuts, and the last car has driven out for the day - the quiet brings a certain heaviness to my heart that is hard to swallow down. A lump in my throat that gradually disappears as I put the day ahead together in my mind. Oh, how I love being around my family - they are purely and simply my life, and nothing brings me the joy of hearing their voices scattered throughout the rooms of this big house. It's what makes it a home, for sure.
So...number one on my list today...fill you in on the good news.
First let me begin with the appointment on Thursday, because getting to this point took a little work. Thursday was my meeting with Dr. Walk. The big one. Dave came with me and we had typed up a fairly comprehensive list of concerns and questions that we wanted to be addressed. My decline over the past month or so has been significant and the issues around my ability to "think" were getting worse daily. Usually, in past flare-ups, I can muster up a good day here and there. The past four to five weeks have been consistently bad.
Dr. Walk spent a good hour or more with us. He listened to each and every concern and did his best to address them. In the end, we jointly decided to stop the IVIg therapy - temporarily. In his attempt to stop the progression of the disease, he feels that we reached a point where I was actually being "over treated". It really is a balancing act. Knowing how much is just enough and not going over that amount is tricky business, and varies greatly depending on the person. As with any chemotherapy type drug, there are definitely negative side effects and the body eventually begins to react or reject.
He also felt that this constant weekly ritual of receiving therapy and being sick was keeping me in a "sick-rut". Which makes perfect sense to me. So it was decided that I would not get my therapy on Friday and I would take a break from being treated. He talked about referring with a couple of my other doctors, did a thorough exam and we were on our way home.
The car ride was quiet. It was a very confusing feeling for me. In one respect, we accomplished exactly what I had hoped for in that I honestly felt that the IVIg was making me sick. Or SOMETHING was making me sick. So the decision to take a break should have felt good. But I felt completely hopeless. Here I was, at one of the lowest, scariest points in the disease, and I felt as if there was no plan to either figure out what was going on or to stop it for that matter. It's really the first time I felt like I had been sent home to just deal with it. Which, I am sure is not that uncommon with life long illnesses. So I worked really hard that afternoon to just accept where I was and trust that what we were doing was right thing.
Friday morning I woke up and despite feeling absolutely awful, I put my best foot forward and decided I was going to break out of this "sick rut" and get better. It was pretty pathetic. And by mid morning I was completely frustrated and unable to process anything. And then I got a phone call from Dr. Walk. He was actually sitting on an airplane ready to head out of town. He had talked to a couple of other doctors - my rheumatologist and a specialist that deals with allergic reactions. They decided that one of two things were happening. Either I was indeed having a reaction to the IVIg or I was having a serious lupus flare up. Either way, I needed to get on a high dose of steroids - immediately. I have been adamantly against the idea of steroids and only taken them for short amounts of time or in very small doses. But at this point - I would do anything.
He wanted me to get a series of blood tests done prior to beginning the steroids. So Friday afternoon my father drove me into the U of M where I willingly dropped off 13 tubes of blood and picked up a new supply of steroids. I was instructed to take them as soon as the blood work was done - which I did. By Saturday morning I was about 10% better. By Saturday night, 25% better. By Sunday morning I guesstimated my improvement to be at 50% or better! We actually had company on Sunday, for which I made lunch! It was a wonderful day!
I still don't know what's going on. And I am certain that in about an hour or so my phone will be ringing with nurses and doctors, scheduling all kinds of appointments for this week. But let me tell you - this feels pretty darn good! The only time I spent in my bed on Saturday and Sunday was to actually "go to bed" at night. YEE-HAW! I think I even wore the dog out - who as gotten accustomed to laying around with me all day! She kept looking at me like....what they heck? Every time I walked by the bedroom door she would hop up on the bed and wag her tail as if to say, "Here I am, come lay down...right here....next to me...in our spot...right here...with me...." wag, wag, wag!! I believe I sorely disappointed her.
As for me...
Happy Monday! I've got things to do! Hope you all have a wonderful week - no matter where you find yourself. And I promise to update with any new news. But until then -
Hello family and friends!
Not quite a week past, and I'm still upright for the most part! This, in and of itself is pretty good news. I'd say that out of any given hour of the daylight, I spend at least 65% of it up and about in the house. The other time is basically spent in bed - in front of the TV....ugh. As most of you know, I'm not a huge TV watcher. So this past year has been a great lesson in patience when it comes to regularly scheduled programming! I'm not a big fan! If I can land on a good movie...the kind without commercials, that's the best! Otherwise....it's news and the History Channel!
Probably the biggest news of this week is our new addition to the family....Miss Maggie May Johnson-Buresh!
Maggie is a three year old Lab-mutt mix that we rescued from a foster home outside of Albert Lea, Minnesota. We had been contemplating bringing a dog into our home for about the past six months, knowing that with me home it would be the perfect time. But we also knew that none of us were up for the added responsibility of a puppy and we pretty much needed to find "insta-dog"! Thanks to Dave's great sense of needed characteristics and the amazing love of "Bill the foster Dad" from Wells, we have our perfect dog! After a number of long distance phone calls, Dave loaded up the van with a bed for me and needed doggy supplies for Maggie and we were on our way to Albert Lea in the Valentine's Day blizzard! We met our new girl in the parking lot of Subway, filled out needed paper work, dodged blistering snowflakes, gave hugs and we were on our way home. It was love at first sight!
I can't say enough about this girl. She's got the temperament of an old farm dog, perfectly potty trained, has no interest in people food, walks right along side when on a leash, sleeps at my feet no matter where I am and has a constant smile on her face. If Blue Cross Blue Shield had any idea whatsoever, they would include "rescues" in all of their health plan options! She's by far the best medicine yet!
As far as health "stuff"... Well, I'm doing "ok". I definitely feel like I have digressed a level the past couple of weeks or so. We're not quite sure what's going on. It seems interesting to me that this down turn has been since I have been on IVIg weekly. My hope, and the hope of my doctor's was that giving the therapy weekly would have given me more consistency in GOOD days. For some reason, the exact opposite has happened. It seems as though I am consistently sicker and trend towards getting better the farther from the IVIg administration I get. Which makes me wonder if my body is rejecting it.
I had a new nurse last week from South Carolina. She filled in for the company that usually handles my IV therapy. She has been administering this medication for over 25 years and had some very good information for me to bring back to Dr. Walk this Thursday. Her opinion is also that I am either rejecting the drug or that it's just too much for me.
My largest concern remains the issues I am having around my cognitive abilities. These issues have been fairly substantial the past couple of weeks. Entire days are missing in my mind and no matter how my family tries to instill activities and pictures, they just don't come. This is by far the most frightening aspect of this illness and I ask for all the prayers and good energy you can muster up for me in this regard. I'm pretty scared. My hope remains that this is part of getting the medication/therapy issue resolved. Especially since it seems worse since this has been occurring.
I have LOTS of questions and requests of Dr. Walk on Thursday. It's a pretty big appointment and I hope to leave with either a new plan at the U or possibly a referral to Mayo. We shall see! Until then - me and Maggs - we're just hangin' out together! Wishing you a lazy-dog kind of day!
Love you all -
Hi, it's me again...finally!
Let me tell you - the world looks a lot better in the upright position! Never underestimate the power of a spinal headache! Yikes. Still suffering a bit with it, but not nearly as bad as the first four days. Which basically looked like this....
From Sunday morning until yesterday - my family surrounded me. A MUCH better place to get well than in the hospital!
I have to say, this last hospital stay was one of my most discouraging. I went in in extreme pain and came home in extreme pain. Part of that was of my own doing. Those of you that have been with me since the beginning can remember how difficult it was for me to get off the narcotics after months of being in the hospital. From February to May I was about as heavily medicated as one can possibly be. Once the diagnosis started coming, I made the decision to get myself off all pain medications. It was a journey I started in June and finally completed about November of this past year. It was BY FAR, the most difficult thing I have ever done. So after going through that, I made the decision to only use pain medication as a very last resort. And if it needed to be used, I would use as little as possible.
When Dave finally brought me into the ER on Thursday night (per Dr. Walk's instruction) I was in pretty tough shape. I was suffering extreme pain/pressure in my spine and head and was feeling generally sick all over. I could not move in any direction without hurting. I also had very swollen lymph nodes under my arms and in my groin. Their first thought was that I had spinal meningitis, the viral kind that can be contracted through the IVIg therapy. The spinal tap showed that not to be true - thank goodness. It also showed an improvement since the last puncture - which was very, very good news. But after a couple of days of testing - there was no answer for what was going on. The pain was 10+ and I could not keep any food down. I agreed to take morphine the first two days, but then decided that the vomiting the morphine was causing was only making the pain worse, so for the remainder of my stay it was just Tylenol.
The spinal tap, or lumbar puncture as they call it now days, did not go so well. I was not a very good patient when they were trying to get the fluid out. The pain was making it difficult for me to remain still (pretty important for this procedure!) and they had to make numerous attempts. This left me with a nasty, nasty spinal headache on top of the headache that I went in for originally. Plus it added quite a bit of discomfort to an already miserable spine.
Once they knew that I was not going to accept any pain medication, there was really not much they could do for me. So Sunday my family brought me home. I honestly remember nothing of the entire day. I don't even remember leaving the hospital. The good news... yesterday I started improving! I am able to be upright for extended periods of time and food actually started tasting good. And today....well, just LOOK at that sunshine! I'm looking forward to another UP day, that's for sure!
Thank you so much for all the emails and facebook messages! Gosh, it will take me forever to respond!! But I will! And make sure you get out in that sun today - even if it's just for a minute or two!
Hi from Sara,
On Sunday February 7th, (my moms birthday!), she came home at around Sunday evening because the doctors couldn't do much for her other than give her medication for the pain. The meds that she is on make her veeeeerrryyy sleepy and she is often in bed and cannot move around much for a long period of time. She has a bad spinal headache which is why she is in bed all the time. We celebrated her birthday tonight because she couldn't exactly have a good time last night. So she got a George Forman grill from Dave, Anna, Emma, and I. :) And a whole bunch of wonderful gifts and cards because she deserves it. Thank you all for caring and being so wonderfully nice to my mother and our family. Thank you.
That's all for now
- Love Sara, Dave, Anna, and Emma.
Dave here. Theresa wanted me to provide an update. Her swollen lymph nodes and painful neck and spine persisted and were severe enough that Dr. Walk recommended that she check into UMMC and have specialists take a look. So into the ER we went last Thursday night. After numerous tests Dr. Walk concluded that her troubles are likely a lupus flare up and that she will have to ride it out with pain meds. She is doing so and got a good night's sleep last night. It looked like she might be able to go home today, but she may stay one more night to get the care she needs. Tomorrow is her birthday and the kids and I are prepared to celebrate with her regardless of locale. Have present...will travel!!!
All for now. Love and hugs,
Theresa, Dave and the kids
This is an interesting month. It's like looking at a glass half full, or half empty depending on your view. February...the heart of winter or the beginning of Spring. For me, it always seems like the beginning of Spring. The days are already getting longer and the sun is up by 7:30. And every once in a while when I open the bedroom window, I can smell Spring in the air. The anticipation of things to come!
This will be a fairly short update. Last week started a bit of a downward spiral for me. It began with painfully swollen lymph nodes, migrated into my head, neck and spine - and ultimately ended by settling in my lower back. Sitting for any length of time is extremely uncomfortable. So most of the past six days, I have either been in bed or standing for short amounts of time. It's been an incredibly relentless pain and I am definitely ready for it to move on! If it were not for my amazingly positive family, I think I might give in to a little discouragement. But they just crawl into bed with me and next thing I know - all is well.
I'm scheduled for a full day of IVIg on Thursday. Which will be administered in the comfort of my own home...yea! I'm hoping that does the trick, as Sunday is my birthday and the kids really want to "do something fun" with me. I always tell people, if birthdays are no longer fun, just invite a few kids to spend the day with you. They have this really wonderful way of bringing that childhood joy back into the picture.
I'll try to update sooner rather than later! Until then, have a "glass half full" kind of February day!
Theresa & Anna
Still riding on the hope that came out of this past Tuesday. At least I have it in me! It may not be there very often....but it's possible! And I am very thankful.
Yesterday was PT in the morning and Dr. Walk in the afternoon. I was thinking earlier in the week, that this appointment would be nice and brief. Tell him my good news and make the next appointment! But as these things go, by yesterday I was feeling more "sick" and we had plenty to talk about. One of the things I have not written much about in these updates is how the disease is affecting my cognitive abilities. Probably because it's not so easy to talk about. And there are definitely worse days and better days. Most of the time, I would describe it as "brain fog". Feeling as though I'm just not quite with it or my thoughts and reactions are a little slow. Other times it can be kind of scary - not remembering my address, forgetting how to get to the hospital, losing things... One of the most frustrating is my inability to keep to a task or train of thought. There are days when, by the end of the day, I have a house full of half finished projects. Cupboard doors left open, laundry half done, half written checks on the desk, bed half made... and by the time I figure it all out I'm feeling pretty overwhelmed and frustrated. Two weeks ago I mailed a very important COBRA insurance check to the completely wrong business. This little faux pas almost cost me my insurance for the month of December. That could have been a $50,000 mistake since I had already received the treatments! Or calling the wrong school...three times in a row, to report one of girls home sick. A number I have called for years. The crazy thing is that the recording plainly tells me who I am talking to, and still I leave the message. It was not until I called the number a fourth time and complained that they were not checking their attendance line and WHY is my child still counted as tardy?? - that I was politely told I had the wrong number and please stop leaving messages! Some mistakes are a little more humorous than others!
So yesterday we talked at length about why this is happening. It's pretty simple. Once the disease became a central nervous system issue, the brain is affected. The hope is that the therapy I am receiving will have an impact on this as well. Dr. Walk also performed his usual neurological tests and some of these were a little worse. SO, this is the plan...
IVIg today at home. The nurse should be here in about an hour. The dosage has been increased substantially and I will now be receiving it weekly, instead of every two weeks. The second dose will be on Saturday, at home as well. Then, on Monday I will have another nerve biopsy and round of EMG testing. This is the test where they put the needles into the nerves and shoot electricity through them. It's the closest thing to torture yet! About this time Dr. Walk starts to resemble Gene Wilder in Young Frankenstein!
The dosage of IVIg will be increased each week for the next three weeks. At that point I will meet back up with Dr. Walk and he will determine if this is doing the trick. If not, the plan is to start Rituximab. The drug was actually developed for the treatment of non-Hodgkin lymphoma that is resistant to most chemotherapy. It has since been used to treat difficult cases of multiple sclerosis, systemic lupus erythematosus, autoimmune anemias, Sjogren's syndrome and other severe autoimmune diseases. There is a lot to read on this drug, and it does not come without it's side affects and possible serious complications.
So lots to think about! Like I said at the beginning - I am always holding on to the hope that good days are in there, I just need to find them! I'll update after the therapy is complete. Until then...
Peace to you all,
After much arranging and re-arranging, I was able to get my first dose of IVIg on Friday at Fairview Southdale. The plan was that if that dose went well, then they would bring the second dose back up to the amount it was prior to my having the serum reaction. Everything went great on Friday! I was given the option of either staying in the hospital over the weekend and receiving the second dose, or taking a couple of days off and going back in on Monday. You can guess which option I liked better! So off we went to my daughter's home in Waconia, had a wonderful weekend and went back to Southdale Monday morning. Monday's treatment took about six hours from start to finish, and other than a minimal reaction to the pre-meds, it went without a hitch!
And the best news yet... Yesterday was by far, one of the best days I have had in over a year! I knew it the minute I woke up. It was the greatest feeling EVER! I have forgotten how good it feels to feel good! I was up and showered with the rest of the normal world, went out for lunch with Emma and Sara, bought a few groceries, walked on the treadmill and cooked a real supper! It was a day I will hold on to for a long, long time.
Today will be another good day, although I do have to admit I am feeling the affects of probably doing a little too much. Those of you who know me well were most likely reading the above with just such anticipated hesitation. So you know...I can hear your voices as I type! And I WILL listen! Thank you for your love.
This week will be much quieter than the last couple. I have two appointments on Thursday and that's it. One with PT and one with Dr. Walk. It will be fun to report my good days to him. If that visit goes well, then the hope is to get back on schedule with receiving the IVIg at home. The last time we talked he was contemplating changing the schedule to weekly instead of every two weeks. If that is the case, it would be very nice to be back at home. I'll keep you posted!
Until then, have a wonderful week. Thank you for all the emails, texts and cards! Your grace, perseverance and determination are nothing short of amazing. You are my inspiration and my hope.
Dr. Walk has been trying his hardest to get IVIg sooner than next week. I just received another phone call from him saying that he would like me to go into Fairview Southdale tomorrow to receive the first dose.
Best made plans of mice and men!
Hello family and friends!
Amazing. Another week has passed...and another...and another... I'm just not sure where the seconds go. It's one of those things I remember hearing old people talk about. And then one day you wake up and say, "Where does the time go?" Those old people? Well, I'm finding more and more every day - I should have been listening closer!
It's been a busy couple of weeks appointments-wise. I've seen rheumatologists, immunologists, dermatologists, cardiologists, allergists and physical therapists! I had this funny thought the other day when I was sitting in the office of a doctor I had been referred to for a second opinion. I had never met him before and so in my brain, in this New York style Italian accent, I heard myself saying as he walked in...."You wanna piece a me?"
I guess you had to be there.
The second opinion was from a doctor that also specializes in auto immune diseases. He was not so quick to diagnose me, other than state that I have "Undifferentiated Connective Tissue Disease". Which basically means I have more than one auto immune disease and any combination thereof. When someone has an auto immune disease there is not one simple blood test that confirms that. I've spoken of a "body of evidence" before, and one must truly have a number of things present to have any auto immune disease. Most prominently, are the autoantibodies found in the blood. Autoantibodies are proteins, produced by white blood cells, which normally circulate in the blood to defend against foreign invaders such as bacteria or viruses. Mine, instead of acting against invaders are attacking my body's own cells. Depending on which cells are being attacked, different autoantibodies are seen. There are literally hundreds of different kinds of autoantibodies. When a particular combination of autoantibodies are found, that represents a particular disease. But that's not enough evidence. Then they need a certain number of symptoms to be present - or any particular combination of symptoms. Some HAVE to be present - some are optional. In my case, all of my autoantibodies (of which I have many) overlap in various diseases. As do all the symptoms I have (anemia, high inflammation levels, abnormal cerebral spinal fluid, peripheral and central neuropathy, inflamed glands, fatigue, organ issues...).
The good news... They pretty much treat them all the same. Whether its cancer, or lupus, or MS, or Sjogren's, or RA, or scleroderma... The bag of tricks is very similar. And what works for one patient may or may not work for another. So they just keep trying different mixes until one works - and keeps working!
As far as the other appointments - the only other thing I probably should report on is the visit with the cardiologist. In all of my hospitalizations they have determined that my heart has some electrical issues. So for the next couple of weeks I get to wear a monitor and then they will determine how to fix things. Dr. Chen feels that I am a good candidate for cardiac ablation. I know this has become a rather routine and safe heart surgery, but it's a bit much for me to comprehend at this point. We'll see how the next couple of weeks go!
Next week: Monday and Tuesday in the hospital for IVIg, Thursday afternoon with Dr. Walk (the neurologist) and Thursday night at my wonderful nieces house for a jewelry party! I can tell you which one I will enjoy the most....
Peace to you all,
"In the depth of winter of I finally learned that there within me lay the invincible summer." Albert Camus
As I sit here gazing out my bedroom window; snow blowing, wind chill dropping, I see something beautiful. It's veiled, though. Not obvious. I think that when we give winter our daily gaze, among the busy-ness of life - it appears two dimensional. Black and white. Or like my husband always says, "shades of gray". But the thing you must know about my husband is that the photographer in him sees shades of gray as a very beautiful thing.
So do I.
Because like Albert Camus, I believe winter is much like the human soul. What lies beneath the cold, painful mask left behind by the seasons of life, is an invincible summer. We just need to look deeper. Inside each of those snow covered branches, inside the fallen seeds that lay on the ground in my wildflower garden - deep, deep within the bitter cold lies something I don't understand. LIFE.
And just like those seeds and branches, we persevere. Seasons come and seasons go, and life prevails. Every spring just the hint of what's to come brings a sort of giddiness. We start to figure it out. The winter doesn't last forever!
I'm figuring it out, my friends. The thought of spring doesn't make winter go away. It brings the peace that comes with understanding something on a more profound level. Not two dimensional at all! If a child were to look at a present as only a brightly covered box - cardboard, paper, tape - what joy would it give? But it's the anticipation of finding out what lies within that is almost too much to bear!
I realized in the month of December, that despite the goal I had set for myself of getting back to work by the first of January, I'm not there yet. It was a difficult realization for me. And for a bit, I found myself giving in to discouragement. I told myself that the winter would never end. And I allowed myself to see things as only black and white. Which lead me to understand another characteristic of winter - or better yet - another opportunity of winter. Everything slows down. And thank goodness, because when would we have the time to see those deeper things? It's only when I sit here - gazing out my window at the snow storm on the other side of this warm glass, that I take the time to understand what's real. To take a peek into my very own soul.
So who knows what the next few months will bring? I do! It will bring an invincible summer!
"Look round and round upon this bare bleak plain, and we even here, upon winter's day, how beautiful the shadows are! Alas! It is the nature of their kind to be so. The loveliest things in life, Tom, are but shadows; and they come and go, and change and fade away, as rapidly as these!" (Charles Dickens)
Thank you, my lovely husband, for showing me the beauty in the shadows.
Hello family and friends!
I hope this update finds you somewhere toasty warm! If you are anywhere near us, that most likely means you are indoors. We woke up to a -16! We are now at a balmy 7.5 and declining. I think the highest our thermometer got was 8.
As Dr. Walk would say, this weekend has been "unremarkable". Never thought that unremarkable would be a good thing, but it sure is in the medical world. Other than some GI issues that have kept me in the bathroom, I have had minor itching and some irritation in the arm that got the therapy. Nothing that would land me back in the hospital by any means...yet. I say yet, because if I am having a serum reaction the effects will not be seen for a few days - possibly up to 14 days in some cases. For those of you interested, I found a very good explanation of serum reaction on Wiki: http://en.wikipedia.org/wiki/Serum_sickness. It's actually not an allergic reaction at all. It would be more closely related to a rejection rather than a reaction, because the symptoms are not instantaneous.
So unless things change tonight, I will be back in the hospital tomorrow morning for the second dose. Dave will drop me off on his way to work and my father will come pick me up when I am done. I am so blessed to have such wonderful men in my life. They are both so very compassionate and caring - I could not ask for more. It's not an easy job - caretaking, but they have done it with perfect grace. And both of them have had their share this past year with my illness as well as my Mom's. When you are saying your prayers tonight, or sending your positive energy, please think of these amazing men.
Next week is packed with appointments. I have NO idea when I am going to get Christmas stuff taken down!?! Oh heck, who cares! I'll just prolong the season, what could that possible hurt? I have to say, my tree is looking pretty good yet. Anna picked it this year. She wanted a short, fat, long needled tree. Very different from our usual 9 foot balsam fir! It was a little difficult to hang ornaments on, but the thing looks just like it did when we brought it in. And not a needle on the floor! Way to go Anna! Hey, maybe I'll just keep it up until Easter and hang eggs on it!
Tonight is our last official night of "Christmas break". I'll miss my kids terribly when they head back to school. I have truly enjoyed their time at home this go-around. They are the joy of my life.
Blessings to you as you start a new week and a new year.
Happy New Years Eve!
Greetings from room 335 at the Radisson on Washington Ave! And let me tell you - it's pretty darn quiet here!
Which is fine by me!
Today went fairly good. We were at Riverside by 7:45. This is the first time I have been there for the IVIg. In fact, Dr. Walk did not even know that they did infusion there so this was a lucky break for me. I've received it in the hospital at UMMC and at the transplant center and home, but not on this side of the Mississippi. The "accommodations" seem to vary, but the nurses are always the same - extremely compassionate and very good at what they do.
We started the morning out with a bit of a glitch. In fact, for about an hour or two, it was looking like things were going to be postponed until Monday. One of the options Dr. Walk gave me late last night was to wait until Monday and check into UMMC for the therapy. Ugh. For one, I have been feeling so crappy I just want to get it done to feel good. Second, I really don't like going into the hospital. So the compromise made was that we stay in town and not head back to New Richmond.
Prior to getting the actual IVIg, I get a regimen of Tylenol, steroids and Benadryl. Once I get those drugs then I have to wait for about 45 minutes before the therapy can start. This is all to keep me from having an allergic reaction. They put the Benadryl directly into the IV line, fairly close to where the IV actually goes in. Right away I knew something was different because it HURT LIKE HECK! Then in about 30 seconds all the veins around the IV site started turning bright red and creeping up my arm. It looked and acted like what you would think would happen if you injected red dye into your veins. It was pretty weird. And not the best sign!
So the fear was that my system is so messed up right now that I am reacting to even the most benign drugs. But after consultation with a couple of doctors it was decided to proceed. I'm kind of in the middle of two trains of thought. Dr. Walk wants to get the IVIg in me with the least amount of risk and suffering and is ultra, ultra conservative. Dr. Rosenthall is the doctor trying to diagnose the allergic reaction and he would actually like me to "react" so they can do the blood work as it happening and compare it to all the blood work that I had done yesterday while in a "non-react" mode. He did not even want me to take the pre-drugs as they would interfere with the blood work. I think we ended up somewhere in the middle. I received a little more of the pre-drug than normal. They also decreased the dose and administered the therapy much slower.
So here I am - sitting in my hotel room; EpiPen 2-Pak, albuterol inhaler and bottle of steroids by my side just in case of an emergency. I'm thinking that would get me across the street ok! I'm feeling like I have a bad case of the flu, but right now - itch free! The next couple of days will tell. If I am indeed having a serum reaction, that usually presents itself in a day or two. But for tonight, New Years Eve, it's cuddle time on a Radisson king size bed with my honey.... That's just fine by me!
Thank you for being with me along the way.
Dave here (hidden track). Speaking of cuddling...Theresa has a special blanket. One she cuddles in every day. A fabric woven from the day's conversations and letters and emails from you. The best of embraces. Yes.
Thank you for your kindness and caring. And Happy New Year here we come! d
Hello family and friends!
Gosh, I'm two for two. Two updates in two days! I decided I better get an update out since the next few days will be "full" and it's a good feeling to know you're positive thoughts are with me. I'll try to keep this brief....
I met with Dr. Walk on Monday. A couple of things came out of this meeting. First, the examination showed that things (neurologically) have gotten a bit worse. Not everything - just some things. That fact, combined with the fact that the blood work taken while I was in the ER also showed things to be declining, leads him to believe that the disease could be progressing.
Second, he is not completely sure that I had an allergic reaction - but the likelihood is very possible. Because of these two things combined, this is the plan that the doctors have come up with for the next couple of days. I use the plural form of doctor because Dr. Walk has brought in a couple of new doctors that I have not actually met yet.
Tomorrow morning I will be at the University at 7:30am. I will be at the lab first thing for blood work and then off to an appointment with an allergy specialist at 8:00. This appointment is scheduled to last two hours. Then at 1:00 I will be having a Brain Stem Evoked Potential Test. At 3:00 I will then have an audiogram, which will test my brainstem's response to sound. From the end of that exam until about 7:30pm I will be enjoying the company of my wonderful husband. Hopefully for a nice evening meal!
At 7:45 I will check into the hospital for an MR Venogram and an MRI of my brain. If all goes well, I will be back with Dave and we will be spending the night at the Radisson next to the hospital. We decided to stay in Minneapolis because I have to be right back in the hospital at 7:45 the next morning (Thursday). If all the tests above are "ok" then they will start the IVIg at 8:00am.
Because of the short notice (needing to be in the hospital and not at home) the only place they could get this done is at Riverside. The concern is that if I was indeed having an allergic reaction, receiving it again could have an exponential affect and this reaction could be worse. If the actual administration goes well, then they will just keep me in the hospital for the day for observation and set up the next infusion for Monday. If there are signs of an allergic reaction then I will most likely be in the hospital over the weekend. UGH! I feel like I need to take a breath!
Not exactly the funnest way to spend New Year's Eve - but hey, I hope to get a nice dinner out with my husband and that is always a good deal! For all of you out there that celebrate the New Year in a more traditional fashion - have lots of fun and please be safe!
Merry Christmas and Happy New Year!
I hope that this message finds you all well and enjoying this holiday season with family and friends. It’s hard to believe that the last update I posted was almost ten days ago and Christmas has already passed. And here we are, on the heels of the New Year – 2010! I wonder what it will bring? New adventures for sure! But mostly, I hope that it brings more time with the people that I love. The “new” doesn’t seem all that scary when we are surrounded by family and friends. In fact, for me, it makes all the difference in the world.
So, a little bit of an update since the last time I wrote to you….
The last IVIg Therapy did not go as well as it usually does. First of all, I ended up being quite a bit more sick than usual. Basically, I felt very flu-like and extremely fatigued. Right away I knew that things were not “normal”. And then about two days after receiving the last dose I came down with a horrible case of the hives – everywhere. I made it through the first night, not wanting to go to the ER. But then after speaking with the nurse the next morning it was decided that I needed to go in right away. Of course, all of my doctors were out until after the holidays. They (the ER docs) administered some IV medications to calm things down and sent me home (yes!!!!) on pills until I could be seen the next day. I was not that thrilled with seeing doctors that were not familiar with me, so I managed to hold things at bay all last week. Dr. Walk returns on Monday so the plan is to meet up with him as soon as possible.
I assumed that I was having an allergic reaction to the IVIg. The ER doctor seemed to think I was having a Lupus flare. All I know is that it probably needs to be figured out before I receive the therapy again this coming week. Tomorrow morning I have a PT appointment and an appointment with the cardiologist. I’m hoping that they will be able to fit me in to neurology sometime after those appointments and save me another trip into the city. We’ll see!
Otherwise – same old, same old! The holidays have been a nice distraction and I have enjoyed the time with family immensely! My kids have been patiently teaching me the “ins and outs” of Facebook, so if you’re interested, there are a few pictures. Thank you to everyone for all of your messages – they are just the best!
Blessings to each of you this New Year and always –
Happy Friday to you!
As I sit and type this message, I am receiving my second round of IVIg therapy. Yesterday's went really well again. Not much of a fever and I was able to sleep off a lot of the "flu-like" stuff. It's interesting - when I actually receive the medication it makes me feel pretty sick, but a day or two afterwards I feel much, much better. That usually lasts for about a week and a half, and then things seem to decline a bit. The hope is that I eventually get more "bang for my buck". Pretty cool though, that I can be sitting in my own bedroom, typing to you, and getting such a treatment.
Yesterday also entailed another trip to physical therapy on the Riverside campus. The women that I am seeing is very specialized in PT for neurological disorders. I get a full hour with her in a room just for me. I've never experienced anything like this type of PT before. It's very holistic. She not only addresses the physical side of things, but she is very concerned about the social and emotional aspects of the disease. I have to admit, the initial visit was very difficult for me. It's the first time I have really had to take a look at myself in the mirror since the whole illness thing began. I didn't even recognize myself - the person looking back looked like a hundred years old to me. Head leaning down, shoulders hunched forward, hips out of whack, weight bearing off to one side and legs misplaced. Who was this person? I had everything I could do to keep from just breaking down in her office. She then slowly put things back where they should be. Tilted my head up by the chin, gently pushed my shoulders back, straightened my hips back to center and put my feet shoulder length apart so that the weight could be distributed evenly. There I was!
So my first week of exercises was nothing more than trying to maintain "normal". This proved to be much more difficult than I anticipated. By the second day of maintaining normal, I was a ball of knots and cramps. I would have to lay down just to give myself a break from normal! Basically, what has happened is a combination of months in the hospital and muscles atrophying due to the neurological problems. The smaller muscles are the first to go. That leaves me using the larger, more energy exhausting muscles. Since they are the wrong ones, as well as the biggest ones, they pull me into positions that are not helpful. The idea is that I only have so much energy for one day. To allow those big muscles to do all the work depletes my energy store just to move around.
Once I get a feel for what normal is, then the real work can begin of trying to strengthen things back up. The days ahead will include lifting weights, swimming and the treadmill. This is where the social/emotional side of me has a tendency to not listen to reality. It's a far cry from running marathons and I have a lot to do in accepting this new version of me. I was whining to a good friend the other day about the difficulty I was having with accepting this new person. How could I be a fighter and accept this new me at the same time. Accepting meant.....well, accepting. This is a bit of what I got back, "What you can do has changed, not who you are. Same face, same eyes, same smile, same voice, more importantly same kindness, same loving intent...Being a fighter is a quality of being, independent of the nature of the particular fight, or whether you win or lose. Physically we're all just fleeting manifestations of the great Earth, dirt, water, air, with a little sun thrown in. Then there's something more enduring that transcends the particular manifestation."
That's all I needed. By my second visit yesterday, I had accomplished my first goal - find normal, and find me.
So together, you and I fight on!
Gosh, these last days of December are just flying by! I don’t think a month has ever passed so quickly. Of course, when you move at a snails pace, everything seems fast!
This has been a tough week. I’m finding that the days that precede my IVIg therapy are my hardest days. Most likely this is due to things wearing off and my body fatiguing more with time. For this reason I am glad that the doctors have changed the therapy to every two weeks instead of every four. This week has also been busy with appointments. I missed my physical therapy appointment on Monday due to the weather – which was just fine by me! Tomorrow is PT again at 8:00am and the biopsy at 10:30. Then Thursday and Friday are IVIG, which pretty much knock me out for the day.
Today, on the other hand, was spent in the hospital…but not due to me! Dave has been struggling with a torn meniscus in his right knee for the past few years. It has made his running not so pleasant and definitely put a damper on his marathon endeavors. So due to this worsening as well as the fact that we have met our out of pocket insurance requirements, he decided to just get it done. Let me tell you, it’s pretty pathetic around here! The surgery was very successful, and I am amazed at how well he is getting around the house. He’s one tough guy and not much ever gets him down. For this, I am so thankful.
One thing I really wanted to mention before I hit the hay for the evening. I’m WAY behind on responding to emails, cards and phone calls! Don’t give up on me! I have not forgotten about you. Part of the reason is that when I do finally have the opportunity to sit down and catch up, I like to take my time. It is so good to write with meaning or spend a half hour on the phone with a good friend. So I apologize if it seems I’ve fallen off the face of the earth! I’m still here!
In all of the busy-ness of doctor’s appointments, to-do lists and Christmas shopping, I think my goal for the next few weeks is simply going to be this…
Days on the calendar only fly by because we allow them to. It’s our inattentiveness to what really matters that makes tomorrow come with such ambivalent haste. But if we just stop and breathe, listen to the snowfall, watch all the wonder of this season in the eyes of our children – we’ll get it right, you and I.
Where do I even begin? What words could I ever type that would express a thankfulness so profound? And what adjectives, what nouns and verbs, what perfect sentence structure could even begin to describe an event like last night?
You know, there are things that we hold onto from our childhood. Some serve us well and some...well, they don't really serve us at all. Some big, some little. One of the little things I always thought would be sign of a truly complete life, was that of a surprise birthday party. The kind you see in movies. Where completely unsuspecting people walk into a dark room, flick on the light, and are overtaken by the shouts of "SURPRISE!" by what seems to be hundreds of their nearest and dearest friends and relatives.
I never had that surprise birthday party, and that's o-k. As we "grow up" in life, the joy of giving holds much more importance than receiving does. Motherhood plays a big role in that. For me, there has been no greater joy in life than celebrating my children. And I'm not just talking about birthday parties and Christmas mornings. Celebrating them every day - reminding them each of the miracles that they are. This, in my book, is giving made easy.
Last night, in amongst the reality of pain and illness, I experienced one of the greatest days of my life. It was a night of complete and unconditional giving on the parts of some of the most amazing people I have ever known and some I have never even met. All the movies, all the visions of childhood "SURPRISE" pale in comparison to what was given to me last night. They may say that this is giving made easy, but I know the reality of it. A tremendous amount of effort and commitment goes into pulling off an event - no, a Gala such as this. And then, for all of you out there, that "weathered the weather", took time away from your families, your pets, your Christmas shopping or your few short evening hours of rest - to venture out in the storm and climb to the 22nd floor just to be with me. This giving humbles me to the core.
As the night ended and the band played it's last tune, I knew I should have walked up to the mike and thanked you all in that moment. But words completely and utterly failed me. They were just missing and for the life of me, I could not find them. Receiving isn't so easy. And sometimes, as many of you close friends know, I don't do a very good job at it. I wish there were some magic thank you card from Hallmark. Or better yet, some fancy gift that gets sent out on behalf of a "donation given". Something I could give back...
So my gift to you is my promise. My promise to "pay it forward" as the saying goes. I've become a much better person because of you. I promise to take the time to send a card, to make a phone call, to visit, to lend a hand, to give of my possessions and my time, to help those I don't know, to teach my children about giving AND receiving, to make my first thought a positive one, to strive always to see the best in others, to not give up on friends and family when the journey is long and to remain faithful to Hope. You have shown me the way.
So, where do I begin?
I guess I'll just begin - and end - with thank you.
What I learned today…
Nurses who wear black pants to your house attract white cat hair.
Not all nurses like cats.
If you beg hard enough, Verizon will give you two refurbished phones for just around 50 bucks. (Even if you don’t buy the insurance!)
Most of my closest friends stay up way too late on their computers.
And lastly, but not least, worry really doesn’t get you anywhere.
It was a long day today. As I type this message Dave is sleeping quietly behind me, the cat is curled up in the hallway and I am waiting for medications to “kick in” so I can join the sleeping ranks! The day started with IVIg therapy, which takes about four hours. Once again, things went without a hitch. Not even a fever this time! Have I told you how thankful I am to be able to have this done at home? It makes all the difference in the world.
As soon as the therapy was complete, I was off to my appointment with Dr. Walk. Good news and not as good news. First – I am happy to report that there are no cancer cells in my spinal fluid. This was a definite concern.
So then, the question remains as to why my cerebral spinal fluid is full of white blood cells. It’s not inconsistent with what is going on in the rest of my body (my overactive immune system attacking all the good stuff), but it’s not consistent with my specific diseases. In fact, Dr. Walk stated that he could only find one brief indication of this about 30 years ago with Sjogren’s. It’s just not a good idea to have anything attacking your central nervous system. So the next step is to get another opinion from an autoimmune specialist. They are working on that and will get back to me.
The consolation in this is that most things that would cause this would be treated exactly as we are currently treating things – with the IVIg therapy. There is some discussion about changing to a drug called Rituximab, but I think the plan is to continue as is for the near future.
A couple of other things talked about – one, due to the neurological stuff going on, it appears that I am getting a little weak. So to prevent further atrophy, I am going to start physical therapy on Monday. Two – he rescheduled my biopsy with a different doctor. Someone a little more specialized, I guess. I just keep putting this thing off with the hopes that it won’t need to be done. No such luck!
In the end, I think the hardest thing I learned today is that there is no magic pill for this illness of mine. We had a little bit of a reality check at today’s visit and initially, it hit me pretty hard. But in the quietness of my bedroom, as I read and re-read all the wonderful emails I have gotten – this is what I am left with….
I am not alone.
And I can do this.
Peace to you all,
Hello! It’s been awhile!
I apologize for not getting an update out sooner. With the holiday and our visit to Dave’s family, I have pretty much just run out of steam! In this situation, no news is good news!
I hope you all had a fantastic Thanksgiving. We were so fortunate to have been able to spend this holiday with Dave’s family. It was a trip made possible completely out of love and we have a lot to be thankful for.
We arrived home yesterday evening and today, as I sit here, I am receiving my first home IVIg therapy as I type this update. My bedroom has been turned into a little hospital room…with a cat! Jenni, our family pet, is quietly keeping company with me. I cannot tell you how wonderful it is to not be in the hospital! There is no place like home!
Tomorrow is another round of the same, and then I have an appointment in the afternoon with my main neurology doctor. Hopefully he will shed some light on my most recent news. Keep your fingers and toes crossed.
As far as how I am feeling…
It was wonderful to get out of Dodge for a few days. Just to break out of the “doctor-routine” was medicine in and of itself. But I am sure feeling the affects of it. That, combined with being at the tail end of the last therapy, has left me feeling pretty rough. It seems like I have this very small supply of energy and when that runs down – so do I.
I have been struggling lately with quite a bit of numbness/weakness in my arms and legs. Most of the time it’s only noticeable to me, but occasionally I veer off track when walking. I stay pretty clear of cars and tight ropes these days!
I’ll report more after my appointment tomorrow. Until then – keep well!
I hope you are all enjoying the company of those you love this holiday. Like my husband says, it’s all the fun of Christmas without the stress. I think I agree. Thanksgiving is kind of like…”Pre-Christmas” without all the trimmings. Unless, of course, you are the one cooking!
This year, I am NOT the one cooking. Quite unusual for me, but I can assure you I will enjoy every minute of it. We are blessed to be spending this Thanksgiving with a big chunk of Dave’s family – and the cooking actually began two weeks ago! It’s a big day, full of generations of wonderful people.
Health-wise, I have been holding my own these past few days. I did receive a call from Dr. Walk yesterday asking me to come in on 12/3. I would imagine we will talk about things then. So next week will be my first home infusion and this appointment. Until then, with the holiday here, I think things will be pretty quiet. A welcome change of pace for us!
Thank you again for all of your emails, text messages and phone calls. I love every single second of it! This holiday season, I am most thankful for YOU.
No news yet. Which is ok, as I would rather have doctor’s take their time when it comes to this kind of stuff. And Dr. Walk is definitely one of the best.
Physically, I have been feeling a little down the past couple of days. I wrote, in my last post, about things ebbing and flowing. Sometimes I can almost feel this battle going on inside of me. On a good day, I am winning. On a bad day...I am winning a little bit less.
Emotionally, I have been feeling better. And I can honestly report that this is due to all the emails I have been receiving. Most of the emails are from people that I have not heard from in years. To hear about kids that have grown, new jobs, vacations taken, and exciting additions to families – is truly a joy for me. But that’s not all that I hear. And it’s not the biggest part of what moves me. What moves me are the many stories of life’s unanticipated pain and struggle. Some of you have had end-to-end years of disease, loss of jobs, forced moves and multiple deaths. And yet, when you share these very personal stories with me, you all seem to have one thing in common -
And through this unbelievable resilience, you have all come away with lessons that are absolutely invaluable to me. To quote a very dear friend, “ But really through all of this I have found that I have this incredible internal strength. I mean I know absolutely that death is a part of life and that you don't really have a choice but to accept that. I also know that every day you have you better appreciate and not dwell on the negative but just be grateful that you are alive and have one more day to celebrate. I realized that family is number one.”
It’s not about waiting until things get better. It’s about making them all that they can be right now, in the midst of the worst of times. Because “better days” may not ever come. And how sad to be sitting in a place where time is no longer your option and wishing you had done things differently.
I cannot thank you enough for all of your stories. The good, and the not so good. It all makes me a stronger person, and for that, I WILL celebrate.
First things first, I did not hear from the doctor yet. Thought I would get that one out of the way right off the top! Thank you to all those who read this everyday – it’s nice hearing that I am not on this journey alone. I feel like the Verizon commercial, where the Verizon guy and that huge crowd of people follow a person all over the place. It’s a comforting thing knowing you are all out there. Thank you.
I get asked, “How are you feeling” quite a bit these days. That’s a hard question for me to answer after being sick for over a year. I’m usually quite an optimistic person, as well as someone that has learned that honesty is the best part of human relationships (thank you Jeana). Being true to yourself is the greatest gift you cannot only give to yourself, but the people that love you. So, when asked how I am feeling – sometimes it’s hard to tell the truth and remain optimistic at the same time. My husband knows when I am trying to maintain this delicate balance and has now learned to question my response with, “How are you really feeling?”
So I am going to take this opportunity to tell you how (the best that I can and remain optimistic ;-) I am really feeling these days. For the benefit of those of you that feel like I am not being honest!
I don’t sleep well at night. It’s hard for me to get to sleep, and staying asleep is difficult. Although, getting better now that I am off steroids. When I wake in the morning I just plain old feel sick. Flu sick. It’s hard for me to get out of bed and step into the cold. Everything in my body aches. After taking my morning medication and being awake for a couple or hours, I have the best part of my day – from about 8am to 1pm. This is when I feel the best and have the most energy. After 1pm, I start to fatigue. And it’s not the normal fatigue that most people experience; this is what the medical community calls “extreme fatigue”. Where one contemplates the necessity of getting up to go to the bathroom. Where stepping up two stairs is too much. It’s a bad feeling.
I tried to explain it to my oldest daughter the other day. The best likeness I could come up with is when you are sick with the flu, wrapped up in your favorite blanket on the couch and you decide you need to get something from the kitchen. You stand up, walk two steps and then plop back down on the couch because “you just can’t do it”.
Some days are worse than others, but the fatigue never goes away. Thrown in with the fatigue is the battle I have with my pancreas and the neurological issues. I have constant pain in my right side, which worsens if I eat anything with fat or with too much fiber. If ignored, I can experience pancreatitis. This leads to nausea and vomiting. Yuck.
The neurological issues primarily affect my arms and legs, but have moved a bit to my back and face the past couple of weeks. With the IVIg Therapy, this issue seems to ebb and flow. Some days I can’t feel much and have significant weakness and some days it’s more spotty, numb and tingly. Kind of like little bits of intermittent electricity running through me. Not really painful, just annoying as heck.
And lastly, the minor frustrations of irritated eyes, dry mouth, constipation…blah, blah, blah. You get the picture. Not what I want to tell folks when they are kind enough to ask, “How are you feeling?”
I hope you are all enjoying this Indian summer weekend. What beautiful days! Who would have thought after the October we had? No complaints here!
It was good to be home all day. I’m glad I decided to reschedule the rest of my appointments and get caught up a bit. It’s the little things, like being here when the girls get home from school, that make my days so much better. I forget how much kids “talk” when they walk in the door. I love it!
The day was not without its struggles though. I received a phone call from my neurologist, Dr. Walk. He has really become my primary doctor in all of this. He specializes in neurological diseases that affect the immune system and he is very, very good. One thing I have come to realize in all of this – if a test goes well, you get a nice letter in the mail on University stationary. If a test does not go well, you get a phone call. Such was the case today. The results of my lumbar puncture came back abnormal. At this point Dr. Walk is not willing to give any kind of diagnosis, and in his words, “I need to discuss this with some other doctors and think for a while.”
Spinal fluid (which I got to see after my procedure) looks just like crystal clear water. It should have only a very few white blood cells and no red blood cells. Mine came back with more white cells than there should be. This changes things quite a bit for me. The autoimmune diseases that I have should only attack my peripheral nervous system. This abnormal result confirms that I have a central nervous system disorder. A little bit bigger deal, I guess.
So more waiting. In the meantime, life goes on! I enjoy hearing from all of you more than I can put into words. Tonight I received a care package from my friends at work. Inside the bag were two wonderful cards and a scrapbook, full of pictures of co-workers and various quips. I couldn’t decide if I should laugh or cry. HILARIOUS and gracefully loving all wrapped up in a package beautifully hand decorated by the daughter of one of my dearest friends.
Have I told you how lucky I am?
Peace to you all!
Back on my feet again! Whew, that was no fun. Whatever they tell you about spinal taps or lumbar punctures is true…and then some! And I am lucky to report no spinal headache, which I guess occurs in one out of five cases. Not good stats, so I am feeling really lucky.
I have to say, though, it wore me out physically as well as emotionally. Sometimes I can handle the multiple appointment weeks and sometimes I just have to say enough is enough. So today was one of those days, and I called and rescheduled the biopsy as well as the cardiologist appointments. I’ll explain a little why these were needed.
The biopsy is of a salivary gland. It’s one of the “tests of the very weird and bazaar” that I have to undergo for the Sjogren’s disease. It not only confirms the diagnosis, but also helps the doctors to better understand how my body is being affected.
The appointment with the cardiologist is due to the fact that my heart has some electrical issues that got worse three weeks ago during one of my hospital stays. We have found out recently that one of the antibodies that I have has a way of attacking the heart. It is something I have struggled with for a long time so this appointment will hopefully confirm that things are not getting any worse.
The rest of my week should be…rest! I’m looking forward to it, that’s for sure. Thanks, as always, for all the wonderful messages. I have never had so much fun checking my Inbox!
Hi all. Dave here. Theresa is flat on her back now for 24 hours. Her spinal procedure went well, although it was excruciating for her. Her spirits are good and she is reasonably comfortable.
She says thank you for your thoughts and prayers, and she hopes to be up and checking emails by day's end.
Yesterday was another good day. IVIg Therapy went well and I came home with only a slight fever. The plan is to start having these at the Masonic Day Hospital, which is attached to the U of M. The nice thing about going there is that all the rooms are private!! Not usually the case at the U.
I’m pretty nervous about tomorrow’s lumbar puncture. The area of my spine that they need to go through is an area full of scar tissue and a lot of metal. Because of this they will do the entire procedure under some sort of x-ray. I am steering clear of any narcotics so I’m hoping for as little pain as possible and NO spinal headache. I am supposed to be at the hospital at Noon, procedure starts at 1:00 and then I will have to lay flat for up to 4-6 hours.
All in all, I have gradually been feeling better. Less flu-like, and not so fatigued. But it’s an odd thing, this disease. Sometimes I feel better, but when they do certain neurological tests I may be doing a little worse. That seems to be the case these days. One of the good things to report is that I have been able to eat as long as I stick to a low fat, low fiber diet…and don’t eat too much! I generally have minimal pancreas pain. That is a big change for the better.
Hope you all had a wonderful weekend.
Not an unlucky day at all! Everything went just as it was suppose to and I came home without a hitch. For those of you that don’t know the details of IVIg therapy, I’ll elaborate just a bit. This therapy is very expensive, about $30,000 a dose (thank you BCBS), but it is very, very good. For me, it has been much more successful than any of the other medications. But because I have the anticardiolipin antibody as well as a low IgA levels (you can Google that if you’re lame like me!!) there is a higher risk for complications. Because of this, the first four doses were administered with me actually in the hospital. This time I was able to check into the Transplant Center for the day, receive my dose and be home for supper! Tomorrow I will be there at 7am, with bells on.
The lumbar puncture/study is Monday at Noon – I have begged for some sort of “relaxing medication” so keep your fingers and toes crossed. There’s not much I can take these days, but hopefully they will think of something.
Looking forward to a peaceful weekend. I wish the very same for you.
Change is good…so “they” say. I have come to realize that nothing’s a sure thing in the world of hospitals and doctor’s offices. And as my husband says, there is an entirely different concept of time. After four and a half hours of what was suppose to be an hour-long visit, the decision was made to begin the next set of IVIg Therapy tomorrow morning at 8am. Some things improved, but some things were a little worse. The good news… I will be getting the treatments through the transplant center in the PWB building at the U of M – not as an inpatient in the hospital! So if all goes well – I get to go home at the end of the day. This is much better for both my family and myself.
Coming up next week: a biopsy on Wednesday, Echocardiogram on Thursday and a spinal tap (yuck) at some point - day and time not yet decided. I promise to keep you posted. And THANK YOU to everyone for all the wonderful emails and Facebook messages!! That’s just the best part of all.
First and foremost, thank you to all of my friends and family that have been so supportive to me over the past year. It is your love of me that has seen me through these difficult days and made this web site and benefit possible. Despite this illness, I truly am the luckiest girl I know!
Today I am off to the neurologist…again. As most of you know, I spend quite a bit of time there these days and have gotten to know Dr. Walk very well. This disease has taken a toll me neurologically. Most of what I deal with symptomatically is being controlled with steroids and immunosuppressive medications. For some reason, the neurological part does not respond well to these drugs. What they have found is that this part better responds to an intravenous medication called IVIg Therapy. Three weeks ago I was hospitalized for six days and underwent my first round of therapy. The plan at this point is to repeat the four-dose process monthly until things are better under control. Unless there are changes with today’s visit, we have scheduled the upcoming set for next week some time.
I’ll post more details as I know them, and as always –
Peace to you all.