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Your Searching For… A Must Read

Posted Sep 28 2008 7:44pm

Today I’ve decided to respond to the topics that people most commonly do searches for when they come upon this site. A lot of people visit this site to validate their feelings about a particular medication such as Methotrexate, prednisone, and more… Some topics I wrote a brief blurb about are: Being a Caretaker, Dieting, Couples Therapy, Dealing with Health Insurance, Chronic Pancreatitis and my pump, Rheumatoid Arthritis, Running my own company (being a workaholic), real life for the caretaker, and others as the searches come in. This page is based on reader requests

URGENT DANGER : Some of you are searching for stopping PREDNISONE or prednisone cold turkey…do NOT ever stop cold turkey. you could easily die from adrenal failure. Please see a doctor and have them taper you off. I accidentally did it myself once and it was a huge mistake. (More on my Prednisoneoverview at the very bottom of this blog).

This is an example of some recent searches that I have then been turning into overall answers to help curious readers.

describe pancreatic attack prednisone moon face
opinions of real people who take methotrarguing and ra
break up relationship chronic illness type doctor pancreatitis
couples and confessions pancreatitis stiff joints
taking care of sick girlfriend what is happening in acute pancreatitis
chronic rheumatoid arthritis prednisone cold turkey
dance sexy prednisone big cheeks
prednisone moon face alternatives to prednisone for rheumatoi
stopped prednisone can not stay awake

difference between ra and lupus
and my personal favorite: rheumatologist sexy

Disclaimer: I’m not a doctor - these are my own personal opinions and based only on my own body not yours. [This page is a work-in-progress. more items to come this week]. Read about me here…

Last updated: Feb. 10, 2008
New searches I’ll be writing about shortly: describe pancreatic attack.
Medications I’m on/been on further down.

my current diagnosis - if you’re curious what’s up with me - I’ve got lots of juicy pages on the subject. I’ve got RA ( rheumatoid arthritis), chronic pancreatitis, many lupus symptoms but apparently not lupus as of last week’s diagnosis. Look under “category” to find words you’re the most interested in. Also, I created a timeline to give you a sense of how I found out what I’ve got to deal with.

workaholic - I run my own company and work my ass off despite these issues. A lot of times I drive myself too hard…but I love what I do and don’t want to stop. I added the category Running the Company to talk about this more and my Type A Personality. One of my fave items on this: hiding the pain.

“Being a caretaker” is a common search. Jax is the caretaker of our unit/relationship. I love him so much and so deeply. He’s got a very hard job and often I think it’s harder on him than me because at least I know how I feel while the caretaker has to guess. He’s so afraid of hurting me that our sex life is in the shitter. We’re working on these issues in couples therapy. Right now the therapist has assigned us the task of having appointments with each other to break the cycle we got stuck in. Ironically, I’m the one that wants to have sex ASAP…but it’s not as easy as Jax just turning off his caretaker hat. Plus, to be fair, I’m often feeling so crap that it’s impossible. And for Jax, he’s often so exhausted worrying about me and taking care of me that he’s got no energy left to feel sexy. Lately I’ve been much more aware of his feelings and am more sensitive to these realities. Read about us…

The Caretaker - Some days I don’t know how Jax can take care of me without falling apart. He’s always so amazing to me and takes the edge off my pain with a laugh or a giggle. He deals with my doctors really well without a panic attack. He’s a gentleman to them and this helps tremendously. One of the most helpful things is that he is kind to me when I’m sick and never gets mad at me for it. My dad does the opposite and gets mad at my mom when she has pneumonia so I know how it can be. The truth is it’s hard to take care of a sick person with a chronic disease because they’ll always have it. I’ve also known a hypochondriac who thought everything was wrong. Jax would never put up with that. Also, Jax requires that I do as much a possible to stay positive. He refuses to let me be a grump for very long unless it is on this website or in my sleep. But we do have issues with bedroom intimacy as a result even though we are extremely affectionate all the time. He’s afraid of hurting me and also some days are so exhausting for both of us due to this extra energy we use to deal with it.

I don’t now if I can have kids which right now is not our most pressing issue. we do really live in the moment and in the day and not far off. When I do live a year out in my mind - we get into trouble. Also, when I want to throw the towel in we have trouble. It’s critical that I stay positive and let him know I think he’s beyond sexy and super hot and give him sexual attention. He deserves it!!!

Couples Therapy and Staying together - Jax and I stay together because we REALLY want to. I know guy friends of mine who’ve openly told me that they could never stuck with me through all of this due to their own feelings of inadequacy, fear of mortality, fear of sickness, or just not willing to take that much time out of thier life to deal with that bullshit. We work on both of our issues with our families in therapy. We talk a lot outside therapy very honestly so that when we’re in therapy it’s not some huge honesty shock. We have a good therapist that wants us to stay together. When we had issues last November and I made Jax move out - she told us to have him move back in since “separation breeds separation”. That saved our relationship. I can’t imagine having a chronic disease and not going to couples therapy! We need the release. When we first went this is what I thought of it.

For the ill person I believe the temptation is to make the other person “go away” - but to what end? Why would you want to send away the person you love just because you’re afraid they’ll leave anyways and you don’t want to feel like damaged goods? My advice: Get over yourself and live real life not the one in your head. Let someone help you. Let someone love you. You’d do it for them.

friends and family: I think of it a lot like the aftermath of a death in the family. No one knows what to say so they don’t call…they’re afraid to interrupt. But there are those breaks in tradition when someone reaches out their hand sincerely. My job is to accept their love and then gratefulness comes easily. There’re some good books on the topic at the library/bookstore. just poke your head around.Yes, prednisone gives you moon face, double chin, fat abdomen, and makes you feel grumpy and mad at the world. Your body makes you think you haven’t eaten for months. You must try not to eat!! You must exercise if possible. (Ironic when you have RA). I hated Prednisone and in hindsight would do almost anything to stay off of it. I think doctors give it far too often and casually. I have many posts about prednisone because I hated it so much!

In reply to the search for “rheumatologist sexy” I can only tell you that mine have not ever been nor will ever be sexy in their lifetimes unless you like smooth coconuts. BUT I recall a book a read that mentioned something about dating her doctor and I believe it was a rheumatologist… Please visit the author’s link at life less convenient.

Yes, methotrexate can destroy your liver and make you feel like vomiting, nauseated, and gives horrific headaches at first. I don’t recall having any hallucinations on it, but I wouldn’t doubt it if that happened to someone. I just began Enbrel not long ago but have felt no side effects. I had to stop methotrexate because my liver was getting poisoned. I felt so exhausted.

Yes, cymbalta can make you feel totally crazy at times and in some cases has made me and another friend on it hallucinate - but it’s better than wanting to be dead and does take away a slice of the pancreatic pain. I’d actually love some advice on how to get off it without freaking out. If I accidentally skip more than 2 days I am in living hell with headache, flu-like symptoms - no doctor believes me which is insane since it’s happened to my friend also.  I’m about to start going down on my dose so I can get off of it.  It’ll take 6 weeks of lowering the dose slowly to get through it without too many issues.

Answers about Pancreatitis: Many of you write in about pancreatitis. Some are seeking answers on acute attacks. For me, an acute pancreatic attack led to chronic pancreatitis almost immediately. I didn’t even drink for 9 years of my adult life before I got it at age 29. After years of heavy opiads I got a metal pump but in which saved my life. Read more here (me & my pump 2) and here and here (me & my pump 1) . I did have acute pancreatitis first. This quickly led to chronic pancreatitis. I don’t know how long the acute pancreatitis lasted because I was in and out of doctors and hospitals feeling like shit for 4 months before getting diagnosed. I was then put on demerol for many months. (Not a good medication to go on). A year later the pancreatitis raged out of control and boom - I was officially diagnosed with chronic pancreatitis. it does NOT show up in my blood work for my enzymes. The doc is sure that I have it but wasn’t fully diagnosed until the ERCP. That little camera in my pancreas caused me to almost die and the ERCP should not be taken lightly. My doc told me to never get one again for fear of it killing me. Eventually it wouldn’t go away and I had to get a pump to put morphine directly at the source of the pain - my pancreas.

Pancreatitis/How does it feel?: I’ve read that pancreatic pain is just below the pain of giving birth. I’m tempted not to tell you what it feels like because I don’t think it’s healthy to fill people’s minds with new worries that they might have something they don’t. Also, it could easily be a million other things. If you’ve been diagnosed OR you believe diagnosed incorrectly then you can email me and we can talk about it off line. I will day this: pancreatitis did not cause any of my joint pain. It is rheumatoid arthritis that has caused all of those issues. For me, pancreatitis feels like someone is stabbing me right below my rib cage through my back - the entire core of my body at the solar plexus. The stabbing pain is so crushing that when I have an attack I can’t do anything except to curl in a ball and rock back and forth and hope the pain meds kick in so I don’t die of going into shock. There’s nothing like it. I’ve heard your temperature goes to 101 and you can die from your body going into shock. I believe it since I’ve had a few near-death experiences with it. I now have a intrathecal pump from medtronics delivering a steady yet tiny dose of morphine directly to my pancreas. It’s been the best thing I’ve ever done health-wise - getting the pump. I think my doctor is one of the absolute best pain med doctors in the country. Many orgs think so also. This has been crucial to my recovery. I still have to take small doses of pain meds daily for dinnertime or and odd foods that will set off an attack. pancreatic Attack -

Another I have them about every 3 weeks. Nothing can prepare you for it and you do wish you were dead while it’s happening. I’ve learned that they pass and strength is vital at this moment - strength of will that is.. BTW - before my diagnosis they tested me for everything under the sun in my GI areas. I was so ill I could not function so it was clear I had something but no one knew what.

ER, yes or no?: Some of you have written in and asked if you should go to the ER with pancreatitis. If the pain isn’t so severe than take the more affordable route of just seeing a G.I. first. Please go to the ER when you can no longer stand the pain so that they can stabilize your body and give you meds to calm your system down… but BEWARE hospital ER rooms are not equipped to deal with chronic pancreatitis. Many cases of acute pancreatitis that are idiopathic (no known reason) become chronic and the ER room is not equipped to deal with an illness that they can not find. Please see a G.I. doctor after getting a referral from your general doctor for pancreatitis. A G.I. is a gastrointerologist. Be sure to describe you: temperature when you have an attack, where the pain is and where it isn’t, what do you eat that triggers an attack, and any other out of the ordinary symptoms. I had an ERCP which determined my pancreatic diagnosis. An ERCP is when they put a camera in your pancreas. Whatever you do… STOP DRINKING ALCOHOL COMPLETELY... not even a drop so that they can properly help you. I haven’t had a drink in over 6 years.

Pancreatitis & the Future: I was told that pancreatitis would not lead to being diabetic, but I am in the early stages of diabetes now after having pancreatitis for 6 years. God willing I will not get pancreatic cancer. I don’t believe that will happen.

Health Insurance - what a serious pain in my ass. Always an on-going battle to get them to cover anything. More as it happens.  Right now I am starting my investigation of getting some type of discount for Enbrel… I’ll keep you posted.

Dieting  (ALSO PREDNISONE) -
just got on Weight Watchers after being on prednisone. I hope to report good news about my efforts. Pre prednisone: 140lbs./ Post-prednisone - 175 lbs. Current weight 1 1/2 months after prednisone: 171.5lbs. After one month my moon face was finally gone.  Being on lower doeses near the end did not do anything to get rid of the physical side-effects.  Those only started to go away once I had stopped taking it.  I talk a lot about this in my blog so usually if you read a post just remember I stopped taking it on January 1, 2008 - so that you can determine how long I’ve been off it and the results I’m finally starting to see.

One blogger mentioned that it took them over 3 years to get over Prednisone effects.  Meaning it took them 3 years to return to pre-prednisone weight.  God willing that will not be my case - but I can already see that it is a TON of work to lose the weight afterwards.  It’s really a drug that should be avoided at all costs.

I beleive it took about 2 months just to get ALL of the Prednisone out of my system.  A doctor may think that is insane and not possible - but that’s how long it seemed to still be working in my body - as I was without other meds at the time and once it really wore off - I got very swollen from RA all over again.  That was a clear sign to me that it had still been in my body working.  That means it will take that long to start the process of going back to normal.

I also firmly believe that post-prednisone people use it as a crutch to not go out and lose the weight.  Meaning - I could spend 10 years saying I was super-heavy due to prednisone I took at 35.  But the reality is that it does beome a mental thing also.  I refuse to let it have that power in my life!

More as it happens;… Sasha

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