Wednesday, December 30, 2009

Neurologist Appt.

I met with my actual Neurologist today! I usually see her PA but this is about a year out so it was time to see the Big Girl! I just love her. She re-ran the tests of strengths and feels that my strength has come up and I functionally am better.

Its the depression that's killing me. Dr felt its reactive depression after doing battle with skin cancer, breast cancer and double mastectomy, menopause and MS. She rolled her eyes and commented that was an awful lot to go through! She also suggest Elavil was NOT the right antidepressant and to try Pristiq and gave me some samples. After reading the side effects, ugh, I am not sure I want to try this. I might try Lexapro again and give it at least a few weeks instead of a few days. Pristiq is an SNRI like that danged Cymbalta that almost sent me to the ER so I am scared of even trying it. I have to do something since I am sore, and depressed. Cannot seem to snap out of it. Regardless, I will keep trying the 5-HTP for another week or so and hope it helps. It is supposed to really do the trick for fibromyalgia and depression by rebuilding the serotonin in the brain rather than just recycle what you have (or don't have!)

It's a really depressing day today as well with nasty rain and chilly (40's) temperatures. I just wanted to come home and crawl into bed and did rest in my chair for an hour then cleaned up boxes as a start to put down the Christmas ornaments.

I am going to try to eat more, like all the time to help me gain weight. My goal is to gain 10 lbs by the first of March so that will require a ton of food. I already eat a lot but seem to keep losing. The thyroid stuff should start to make a difference but when oh when?

I just felt like crap today and I know its mostly the depressing weather. I bundled up and went out for my 16 minute walk anyways, but even this blood mover, endorphin producer exercise wasn't comfortable or pleasant. I do feel my legs feel a bit lighter though! So good things should follow shortly.


Sunday, December 27, 2009

A Gain in Energy?

This won't be of interest to anyone but me, I assume, but I am posting my current med schedule because I slept great last night and woke up not obsessing about those things I can no longer do. I thought I better note the changes I made in meds.

After Dinner: 3 EPH-DHA, 2 mag glycinates, 1 black pill (primal defense by garden of life) 1 Co Q10 100 mg, 1 B vitamin, 1 D3 5000 mg.

Before bed: Elavil 5mg, 5 HTP 50 mg, T3 12.5 mg, Hydrocortisone 2.5 mg. I had no hot flashes last night and woke up pretty rested. Skipped the bedtime baclofen ( I don't think it helps much anyways, just trashes my stomach and I do want off these meds if possible so I am cutting down) and the valium. I didn't think I would get to sleep without these, but no problems!

Morning: 8 AM 10 mg HC, 12.5 T3, yogurt for breakfast. 2.5 mg Valium. After the original stiffness goes away I can take my shower and get going for the day. I do get up fine but get muscle spasms after walking to the kitchen in my lower back, psoas muscles, calves and hamstrings. Stretching before breakfast is nearly impossible.

Sunday after Christmas

Christmas was such fun! We had my mother in law with us for opening presents. I was so grateful to receive some new clothes that fit! My mom sent the most beautiful warm up suit in wine velore and it was just perfect and so toasty warm and comfortable.

With all the numbness are parasthesias I have, comfort clothes must be soft with little to no texture and easy fitting. :)

We had a delicious ham for dinner, sharing our table with my sister in law and her husband and my daughters boyfriend. He is such a nice kid! Fit right in with our silly family and enjoyed out jokes and stories.

The day after Christmas I basically rested and started putting things away. As I get so stiff when walking and standing up, I do a little and sit. When my muscles recoup a tad, I get up to do more. I am so much more comfortable lying down.

I had thought by now the HC and thyroid protocol would start clearning the RT3 from my cell receptors but so far nothing positive seems to be happening. I feel I have more energy though and rarely sleep during the day. I do sleep nicely at night though! Fall asleep reading my book and don't wake up until the cardinal starts pecking on the window at 7 - 7:30 AM. The nice cold nights recently helped create a super sleeping environment.

I do wake up each day and relive some past portion of my life. I used to get upset about these intrusive memories but am trying to enjoy them then let them go on. I have had a wonderful life. I just hope and pray for more enjoyable and memorable times in the future.

Now its time to start putting up Christmas and start sorting out the things in my house to get rid of in preparation for selling this place in the future. The rate at which I can get stuff done encourages me to start soon and go slow but start now so it can be done in 6 months or so.

Cheers for today! Its sunny and cold.

Saturday, December 19, 2009


A Pine Cay sunset

Most of my family is headed to the Turks and Caicos Islands for Christmas and New Years. We will miss going again this year and its sad. I miss the islands.

Luckily, they all made it before the storm it the Boston Area! I was worried, but the plane left about 12 hours before the onset of the storm and one nephew posted on Facebook that they got there safe and sound. Phew.

The rest of the IVIG...

Third day went well too, so well in fact I went for a walk and managed 25 minutes at a good clip.

Boy, did I pay for that! About an hour after I got back I started the ugly headache and took an Advil. About 5 in the morning I woke with a screaming headache. Ouch. Took an Advil, ate a banana, and put an ice pack on the back of my neck. By the time I got to the infusion center Thursday for my last round for the month I was begging for the headache stuff as a pre med! Luckily it takes the headache away in about 30 seconds.

Final infusion went well but I was pretty weak on the way up and had Dennis escort me as i was afraid I might pass out. I did walk down fine on my own though.

I fought the headache Friday and felt really puny. Some of my buddies at the infusion center said they found the worse the side effects, the better the result and that the results are cumulative. This was a bad one so hopefully I will gain a lot of benefit. Would be nice since Christmas is less than a week away!

Today, Saturday, I feel a bit better but still have flagging energy and an upset stomach. Didn't sleep well last night and that's always a problem. I walked my normal half mile in 15 minutes today and felt better for it and felt some unusual tingling in my legs. The kind I had as this whole MS was starting up. Maybe its reversing? I have my fingers crossed. Please God, give me some energy. I want my life back. Please.



Tuesday, December 15, 2009

Second day of Round 2 of IVIG

All has gone well for these first 2 days. I got a clean stick in the top of my arm where I never bump it and where its easy to rap for a shower. :) Of course I met a new group of IVIgers at the infusion center. Its nice to chat with folks that have a lot of the same issues I do. It is also helpful to share contacts such as therapists, both mental and physical and share numbers for Pain Management places.

I found there are more options than drugs to manage pain. After the new year if the t3/thyroid and HC protocol doesn't totally clear me up, I will pursue other avenues to get back and functional.

Also looking forward to more info on CCVSI research to see if a simple vascular procedure would help the symptoms. The more I get out the more I learn.

Have opted for all the little help drugs with the infusion such as Ativan, Toperol for headache, and zofran for nausea. I forgot to take the antihistamine today and never missed it but i didn't sleep through the 2.5 hour drip like yesterday. Maybe i can get through the whole thing without the pseudo migraine headache. Wouldn't that be sweet!

Saturday, December 12, 2009

Time to do IVIG again

Thanksgiving was great and we all ate too much and enjoyed turkey dinner.

I have had a pretty good month, especially after the IVIG kicked in. I got more energy and was able to do a few more things during the day. I managed to go out to eat one evening even though the pain was awful, sitting in a saggy booth seat. But I was excited to go out. Mexican food was terrific.

Have done all my shopping online and just waiting for a few straggling gifts to roll in. It will be a small Christmas this year since some family members are struggling with the economy and all. We will just have my husband's Mom, sister and brother in law in for Christmas dinner. We will be having Roast Beef this year and not Turkey. If I perk up enough I will make Yorkshire Pudding for all. Southerners don't understand it but they like it when i make it!

I have really felt the IVIG wear off this week. I am getting tired earlier in the day, like about 2 PM and have had to resume naps. Trying to go to bed at 10- 10:30 to get a full 8 hours sleep. Every few days I also get a hint that the T3, thyroid therapy and HC for my adrenals is working. I get a burst of energy and the muscle pain lets up a bit. I go for infusions Monday through Thursday next week. I hope I get even more progress than last month.

Its been dark and dreary and cold this week and its depressing. Hopefully tomorrow the sun will come out again before the next front rolls in.

I try not to think too hard about what all I cannot do anymore and just concentrate on what I can do. Luckily I can type even though my hands are still numb. They have not been hurting like they used to though and that's good!

Tomorrow, Sunday, I will try to cook some meals for the week, in case I am wiped from the infusions, and also make some shortbread to take with me to the infusion center.

On a sad note, my dear whippet, Cosmo, finally had to be put to rest, as the vet could not get him better. He has gone to pizza heaven, trash can heaven and hopefully he is out jumping fences and hiding old pieces of pizza to eat later. I sure miss him as he was a terrific loyal companion for 10 years almost to the day. He was about 12 years old.