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Blogging Delinquent

Posted Oct 19 2010 6:06am

Sheesh, almost 2 months since my last post. I guess that's better than the 4 months since the post before that. Better late than never I say.

First, some pictures:

This is my buddy--Ceaser, a bearded dragon. He is now about 13 inches long. When we first got him in July, he was about 5 inches long. He is a sweetheart, but a pig! He eats anything that is put in front of him.

This is a picture of my youngest's 9th birthday in September. He is the one in the blue shirt on the back side of the table to the right.

And this is his fav birthday present-an electric scooter. It has a removable seat. He rides it pretty much every day!

This is Brian's bearded dragon Cecil. Or I guess it should be Cecilia-we found out she is a she, not a he like we originally thought!

This one is great. This is "sushi" that Brian and the kids made last night. It's made from all sweets--the "rice" is rice krispie treats, the outer "seaweed" is fruit rollups, and the center has swedish fish and fruit multi-colored Twizzlers. They are yummy!

11 year old daughter has joined color guard this year, and here she is getting ready for her first parade which was the high school's Homecoming Parade. She was so nervous that she was going to drop her flag!

And here she is in the parade, she is in the far left line, the last one in the line. She did great, and as I stood there watching, the tears started. It's hard to believe my baby is growing up so fast!

Tthe last month or so has been trying. Lots of doctor appointments, too many actually, and I am becoming increasingly frustrated with the medical field. I went to my primary care, who I see about every 2-3 months. He is the one that I see for depression and anxiety. I used to see a psychiatrist and psychotherapist, but then I stopped because things were pretty much under control. Hmmm...not so much now. I'm not sure what is going on in my brain, but the depression has been seriously out of control. My PCP says it probably has to do with the lesions in my brain that is causing things to get worse. We changed meds from Cymbalta to ER Trazadone. He told me to take it at night because it was going to make me extremely tired, and it would take about a week for my body to adjust. He said to expect extreme fatigue even during the day for the first week. So I started it, and promptly fell apart. The depression become so sever that I actually started thinking that I can't be on this earth anymore. The good thing is that Brian is an excellent listener, and he kept me from following the path that my mind wanted to take, which was suicide. After 5 days of taking it, I called the doc and said no more. He wanted me to give a few more days, but I knew that I just couldn't tolerate it and I was afraid of what would happen to me if I continued. Scary!! He switched me to desipramine, and it took about 2 weeks of dealing with emotions that were totally out of control. I was angry, irritable, and just plain mean. I would cry at the drop of a hat, and fly off the handle with extreme anger over nothing at all. But, the thoughts of being no use to my family and wanting to end it went away. And after a couple of weeks, things lined back up again to where they are tolerable. The depression is still present, and I can still feel the anger attempting to take over, but I can control it.

During this time of med changes and mental issues, I saw my neurologist at the MS Center. The appointment started out well, I was explaining all the changes since my last visit--more pain, more numbness, and the severe depression. He said a few things that made sense, and after we left, I felt like perhaps we accomplished a plan. But when I got home and looked up some things he talked about, guess what? The anger reared it's ugly head! One of the things he kept saying was that I have benign MS. Now I know what benign means as far as cancer goes, but I didn't ask him to explain benign MS to me because he has cerebral palsy and is REALLY difficult to understand. Brian goes with me to my appointments to help me if I can't understand the doctor. So, anyway, I came home and looked up benign MS, and found that it means the MS isn't progressing and no new symptoms. Hello? What about all the pain, numbness, tingling, etc, not to mention the new lesions on my last MRI in my spine? He gave me papers to go to the lab and have bloodwork done because he suspected that the pain is coming from something other than MS. He thought perhaps rheumatoid arthritis causing pain in my joints, lupus, or possibly fibromyalgia. He explained that the blood would show some changes. They all came back negative-no RA, no lupus, no fibromyalgia. And the best part was when I spoke with the nurse on the phone to get the results, she said that all the pain is "just" MS. Just! Really! Of course, she doesn't have it, so she doesn't understand. I've come to realize that even those in the medical field that specialize in caring for patients with MS can't understand it because they don't live it.

Also spoke with the neuro doc about the new oral med, Gilenya, but after some research on my part, and what the doc said, I have decided not to go with it. There are just too many side effects and unknowns as far as long term treatment with it. I have children that need me, and I can't risk it. He also said that tysabri is my best option at this point. I was going to go with it and start the monthly tysabri infusions, but then decided to wait until my next MRI in Jan or Feb and see what it shows. Then I will make my decision. So for now I am sticking with my 3xweekly injections of Rebif, which is really tough. Sometimes the injections are so painful that I don't inject the full dose. I do them manually because the auto injector is even more painful.

Another appointment for me was my annual trip to the ob/gyn. I have been going to this office for years, but the 2 docs that ran the place both retired, so it is all new doctors there. This last visit was with a male ob/gyn, which I have never had before so I was a bit on the nervous side. He was a nice, older gentlemen, but he said some things that have left me confused and a bit angry (there's that word again, I think I need anger management classes!). Anyway, he was looking through my history and asked why I had a hysterectomy in 2006. Cervical cancer I said. He kind of got a funny look on his face and said he wanted to explain a few things. He said I didn't have full blown cervical cancer, but rather carcinoma in situ, and that having a hysterectomy was "a bit of a radical treatment" since the LEEP (removal of cancerous cells on the cervix using an electrosurgical device) procedure I had before the hysterectomy removed all of the cancerous cells, so the hysterectomy was not necessary. He said the testing on the uterus and cervix after removal showed no cancer was present anywhere. Then he said "Well, I guess it was fine to have the hysterectomy anyway since you already had children and didn't want more." I could feel the blood rising to my face because I did possibly want more children, but I was told I HAD to have a hysterectomy so my options of future children were taken away. He said "Do you feel better now knowing that it wasn't full blown cancer?" My response was "No, now I am extremely angry because I never said I was done having children. I was told I HAD to have a hysterectomy which was distressing to me. Now I can't have more children!" He didn't know what to say, so he just continued with the rest of the appointment. I went through so much anguish over having to have a hysterectomy, and now I find out it wasn't necessary!! Again, another reason to be losing faith in the medical profession.

Daughter started Middle school/Junior High this year, which has been stressful, on both my part and hers. She ended up having a "boyfriend" which is a boy that she has been friends with for years. He has come to our home several times and was a very nice, respectful child. Well, they "broke up" because she said he has changed since starting middle school--he swears all the time, gets into trouble in school, and she said he can be very mean now. :( Makes me sad to see such a wonderful child turning into a troublemaker. It's funny in a way because she told me she won't even talk to him now because I have always told her to stay away from troublemakers, and that swearing is unbecoming to a young lady. Wow! She actually listened to something I said!! She said the kids are all getting mean and teasing, especially about clothing styles. She is always worried about what to wear because she doesn't want to be teased. It's awful that tweens and teens have to go through this stuff.

Divorce news and update---I talked with the paralegal at the lawyers office yesterday, and she said if all goes as it is supposed to, my divorce should be final in a few weeks! Hip Hip Hooray! The separation took effect in August 2005, so I have been waiting a long time for this. Brian and I are excited to finally be able to get married after waiting all these years. Yes, it is sad to have to get divorced. but on the other hand, I have found the person that I was meant to be with, and we are excited to finally be able to get married. We are still unsure as to wedding plans. We both have had big weddings, and look where that got us! We are going to do something simple, probably a JP with just the kids present. Although my parents, and my sister and her family will probably be upset if they aren't included, so we shall see. We keep joking that the day I get the final papers, we will probably run out and get married that day!

I have been doing some work in our flower gardens on my good days. My daughter actually asked to help which was wonderful. I have been trying for years to get her interested in gardening but she just wasn't interested. We dug up a few different types of lilies, divided them, then found new homes for them elsewhere in the flower beds. Then we proceeded to plant 135 bulbs for spring flowers. We have 80 more bulbs to go, which I hope we get to planting by the end of this week. Lots of work, but so worth it to see the results of our hard work.

That's enough updating for now. I hope to be back before to long!

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