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.

Thursday, November 26, 2009

One week post IVIG-Thanksgiving Day

I have finally recovered some energy! The IVIG infusions went well and I had a great time at the infusion center, meeting other people with MS and related neurological issues.

Thursday, the last day of the therapy last week and thank goodness no headache last night but I am pretty wiped today. I got the same premeds as yesterday and had a nice infusion. When they went to take the post blood work, I think the girl blew the vein! Afterward, my right hand swelled and got all black and blue. I know I am getting old when this happens. After a week, its mostly all gone, phew.

I slept most of Friday and Saturday, wiped out totally! Attack of the IVIG flu. Sunday I started getting hints of revival and during the week its gotten progressively better. I am not sure I feel better than before the IVIG but not worse. That is good. I am sure I will feel worse when I see the bill though!

Got back some lab results that were a bit discouraging. My vitamin D level has dropped again back down to 38 from 52. That's not great since I have been supplementing heavily with like 3000 ius a day for months! It's time to change brands and get that D level up to 70 if possible! At least my lipid profile is perfect!

I am slowly losing patience with the stiffness and inability to do anything! Arrgghh! I am taking L tryptophan to help with the depression. Trying to rebuild my serotonin stores in my brain. I might switch to 5-HTP if the tryptophan doesn't do it. Hopefully this and the thyroid treatment will get the pain and stiffness under control and I can get off the spasticity medications. Ugh! I so hate drugs!

It's Thanksgiving! We are celebrating quietly at home with just the three of us and my mother in law. It's a gorgeous day, sunny and cool and dry! Hope I can get out today or tomorrow and ride my motorcycle around the neighborhood again. It gives me a sense of freedom and joy.

Enjoy your turkey day, everyone.

Thursday, November 19, 2009

IViG Therapy

Ouch!!! And I just thought there would be no side effects! I have now had three infusions of the drug. After Monday's therapy I felt pretty good and actually felt a very slight improvement in pain and stiffness Tuesday morning.

I get pre medicated with antihistamine (atarax in my case since I am allergic to benedryl) and tylenol for potential headaches. Didn't have any problems Monday.

After Tuesday's infusion where I only took 1 Tylenol and half an atarax, I felt really wasted and slept most of the afternoon. As the evening crept on, I started feeling a bit nauseated and started getting a headache, the typical sinus kind with a little tension thrown in. Didn't think much of it and took a Tylenol before bed. During the night I woke up feeling a bit sick to my stomach and head-achy and didn't like it much.

Wednesday, I just felt awful and crawled into the infusion room almost in tears!Samantha, my infusion nurse took good care of me! She gave me Zofran for nausea, ativan for the aggravation, and toredol for the headache. I felt better in 5 minutes and had a nice infusion.

A lady across the room from me heard what all I was moaning about and said, "IVIG flu!" I guess these are normal side effects of the therapy. Everyone there promised the headaches and agony would go away in a few days.

Everything went well until about 9 PM when the headache crept in again. I took a Tylenol before bed but woke up at 4 with the worst headache I have ever had. Even worse than the one I got when i fell off my bike head first into the stone wall on the road near my home going about 25 mph after heading down the hill after the railroad bridge. ugh. Got up and took an Advil and put an ice pack on my head and it was better when I got up at 7 AM. Took another Advil for good measure with my yogurt at breakfast and its under control today. Luckily, I didn't have any nausea.

One more day of IViG this month, then another round mid December. I am looking forward to the benefits and hope they kick in soon, like maybe Saturday? Sure would like to ride my Motorcycle around the hood again. Weather permitting.

Wednesday, November 11, 2009

Start IViG on Monday

Yay! My insurance company approved treatment with IViG so I start infusions on Monday. I will go Monday, Tuesday, Thursday and Friday at 8:30 AM and be infused until 12:30 PM or later so its going to be a long week.

Hopefully this treatment will give me some function back. Its supposed to reboot one's immune system! And should last a month. I will have to go every month but hopefully not for 4 days each time.

I also saw another Doctor that my PA at the Neuro's office suggested and he validated my efforts to fix my thyroid problems with Cytomel and hydrocortisone. At least I have a guardian and supporter in my treatment plan. As I use the T3, Cytomel, to clear the Reverse T3, I should get past this fibromyalgia and see an increase in energy and a reduction in pain and depression. I just have to stay the course as it can take 12 weeks to clear the Rt3 from my cell receptors.

I am very tired today with the stress of losing my dog, but there is hope for the future! Please pray for me that the IVIG works! My Neurologist believes in it. She is very good too!

On an exercise note, I have been walking half a mile most days. I have done the last 5 of 6 days since the weather has been really nice! 70's and clear except for one humid hot rainy day. I get really tired afterwards but gotta keep those muscles in shape. The keenfit walking poles are a lifesaver.

Sorry it's been so long...

I realize there are more of you checking my blog than I thought!

I apologize for not keeping all this up lately but its been busy with various Dr.s appts and such and those wear me out!

OK today is a sad day because I had to send my whippet, Cosmo off to the vets for the last time. He had developed hemangiomas all over his body and inside his nose. He sneezes blood and it gets all over everywhere and I just cannot clean up all the time. Also Cosmo has gotten so thin even though he eats well. At almost 12 years old, he has had a good long life since I adopted him at 18 months and has been a model dog! I am very sad to lose him but I just cannot bear to watch him bleed out.

So I am crying today, but I will get over it soon. I have lost a lot of pets in my lifetime.

Wednesday, October 28, 2009

Ramblings on Provigil...

Thanks for your support and email, my friends and family!

I am pretty isolated since i cannot drive at the moment. Ugh. Actually I have been home bound for a year now, and don't feel great in social situations since I have such low energy. Guests are mental overload. I did take some MS speed today ie Provigil, 50 mg, so I am awake and have half a brain.

I do know a lot, if not all, of my problem is stress/thyroid related. The high cortisol levels from steroids causes high levels of Reverse T3 and my ratio of t3/rt3 is around 6 and it should be 20 or higher. This means I am NOT getting active thyroid to my cells (T3) so my body is sort of shut down.

Hence the pain, fatigue, anxiety and stress, digestive issues. It loops. A cyclical problem that feeds on itself. I was working my way up on Cytomel (T3) to like 75 mcg a day which is what it takes to clear the RT3 from the cell receptors when they put me back on the danged steroids. Ugh I am back where I started on repairing my thyroid and have to start all over again.

Think of T3 as being nature's speed, or human gasoline. If I was typically hypothyroid, I would have a high TSH and need armour or other natural thyroid with both t4, the raw material, and t3 the active hormone to get un-hypo. I am fine TSH wise, have enough T4, but it is converting to the inactive form of Rt3 in my body, jamming up the cell receptors. It's like a clogged carburetor. Only therapy with straight T3 (and there is no natural alternative for this) over a long enough time, will clear the Rt3 from my cells. Like cleaning the carb with high grade carb cleaner. It sometimes takes more than onecleaning to get the gunk out. I know. I had an old motorcycle that had a gummed up carb and fuel system.

Not many endocrinologists even git this concept at all. They want to give you T4 (Synthroid) or Natural Thyroid like Armour, if you get lucky and can convince them to, just to get your test ranges in range. Then they say you are just fine and it cannot be your thyroid. Wrong!!!!!! We are NOT test ranges, we are people with problems. Thyroid is the key to metabolic problems.

Endos like to treat diabetics because there is a lot of money in diabetes and diabetes drugs, but no money in thyroid, because, after all, the drugs are generic now and are cheap as heck.

If a new doctor wanted to really do some good in the world, they would go rogue and be a sensitive, educated, savvy, thyroid guy or gal, listen to their patients and how they feel, blow off their artificial lab test ranges and ignore the TSH. And then really help people get well. They need to run saliva cortisol tests and T3/RT3 and do the ratios. There are people on the internet who GET it and help more folks get well than all the Endos in the world.

Fibromyalgia, as I have read, is mostly a thyroid problem. I agree, cause when I was doing well, thyroid wise, my fibro was almost a non issue. My guess is MS has a thyroid connection. Why because Joesph Wouk, LDN taker, writer of Google! LDN, son of Herman Wouk (Winds of War and War and Remembrance) has PPMS and uses LDN but added Dexedrine or other speed to his protocol and totally got well. Hmmmm. Makes one think that if speed helps MS then why would not natural speed, T3, Cytomel, help in the same fashion. My suspicion is that somehow he turned his body back on with the speed and keeps it there with the endorphins from the LDN. Hmmm. More research is needed here for sure.

I have to pursue the MS (Like that "Mess" by the way!) drugs and see where they lead me because I definitely have autoimmune issues, but I will pursue the thyroid on my own and either whip this bad pony, or die trying.

When I was in the hospital on Sunday, they were all so impressed that my pulse was 49 and my blood pressure 108/ 70 and my temp was below 98. I was like, good godfrey, that makes me half danged dead. They said well you must athletic. I said, well, I have MS, am a light smoker and can barely walk...My pulse should be around 90 and my BP high as a kite!

Nobody gets it. It's all thyroid related. My idle is really tuned too low The low body temperature shows this. Sheesh I run 97.6 when I need to run 98.4-6. Enzyme functions in the human body are designed to be optimized at 98.6. A degree below and stuff isn't happening in the body! And stuff ain't happening in my body!

Tuesday, October 27, 2009

Another Day goes by

Its been a better day in some ways and worse in others. The Fibro is so much worse after the steroids but at least I am not as psycho today. My stomach is giving me fits and my eyes are wonky. Did manage to do a little bit of work, not much, before i got dizzy and had to lie back down.

Luckily the Neuro's PA called and we discussed the lab results from the blood work at the hospital and what all else I need to do. She told me to hang in there as they (Neuros) are discussing my case and trying to get me approved for IVIG treatments. Gosh I hope it helps as nothing so far has.

My good friend Deb came over today and really cheered me up. Since I cannot go out without getting dizzy its nice to have someone come over. Grannie came too, did some grocery shopping for me, and helped by doing some laundry. Phew! My family is safe, clean, and fed for another week or so.

Was a beautiful day today, so I got Grannie to walk to the mailbox with me. We walked to the neighbor's mailbox about 50 yards farther. I had my poles so I didn't tip over, but was really exhausted when I got back and had to soak my feet with the stim thing (rebuilder) for an hour or so. Warm water felt good. So I got about 10 minutes of exercise. How pathetic!!!!

I so want my life back.

Monday, October 26, 2009

My day in the ER

OH My life is not so good right now. I woke up shaking, dehydrated and sweating like a pig. I could not stand up for more than a few minutes without getting dizzy and nauseous. I called the Neurologist office and the doctor on call told me to go to the ER.

What a nightmare. What a total nightmare. We spent 6 hours there, with no help at all. Over the day I got more and more dehydrated and the doctor's solution was to give me more solumedrol and do some blood work. I declined the solumedrol of course. GAWD. I am on the step down pack and having trouble with it. Why would I need more of that???? During the day I got one glass of water and Dennis, bless his heart, got me a sandwich which I ate after the blood work. After all that time, I got no relief and came home and just crashed in my bed after Grannie came and helped me make some chicken soup with noodles.

Dennis went off to a meeting and Caity went to a church function.

I feel horrible. Anxious, scared, woozy, hungry and confused.

Today I have called the Neurologist office and am waiting for a call back. My hand are cramping so back I cannot pick up anything or hold a pen. Luckily I can type for a few minutes at a time.
This is so scary and so debilitating. I just want my life back or at least my brain back. I want to walk the hood and ride my motorcycle and participate in life again. I cannot get up for long and just shake and shake and shake.

Saturday, October 24, 2009

Day after IVSM

OH ugh, how bad can one feel. My head is foggy, cannot recall my name. Didn't sleep well last night and was sad when the sun came up today. I am just sitting in my recliner suffering with a stomach ache today and trying to drink lots of fluid to flush the cortisone out of my system. I am pretty weak too.

Its a beautiful day outside so I sat out for 10 or 15 minutes and got my vitamin D. Crashing and burning though. Having crying jags and periods of breathlessness. I hope it clears up as I wean off on the Medrol pack.

No more steroids for me, I think.

Thursday, October 22, 2009

Day three of IVSM

Wow, yesterday was a great day. I have the second infusion and all went well. I felt clear headed, perky, pain free and got lots done. However when I woke up, my feet, ankles and lower legs were all swollen up. A steroid side effect. Ugh. Also I think I overdid it yesterday since I felt so much better. That is the kicker with MS. One feels good, overdoes, crashes. Sigh. I just want to get a grip.

Felt horrible most of the day, cold hot cold hot, tired, wired, tired, wired. All these are also steroid side effects. Luckily, I have not had to be restuck as my cannula is nicely embedded and holding up well. One more day, then its out.

After that I do a step down pack to wean off the steroids. Cannot just stop cold turkey. So I get another week of 'roid rage. I sure hope this helps, because its hell going through it.

I do love the new girls at the infusion center next to the Neurologists office. They are friendly, helpful and caring just like the whole staff at the Neuros. God bless them all. I was in and out of there in about 15 minutes with my little ball of Sol. :)

Now if the weather would break and give us clear skys and cold temps! We had about 5 inches of rain overnight last night and the sun didn't rise at daybreak as it was pouring. I did sleep better and woke up only once at 2 AM then slept until 8ish. I should have felt better but for the swollen ankles.

Tuesday, October 20, 2009

Back on IVSM

Had my neurologist appt today at 11:10 and went over my options. Tia talked to me about my DMD options and suggested maybe Rebif or Tysabri or to my surprise, IVIG. I know a lot about the former two but got some info on IVIG. She seemed to think it works like an immune system reboot and work really really well.

Meanwhile after going over my laundry list of symptoms she didn't think I had gone over to SPMS but just never recovered from my previous relapse and need the steroids. Oh well, my eye definately was cloudy, indicating a re-flare of optic neuritis. I also went over antidepressants and will give Lexapro a try starting at 2.5 mg at night and see how I tolerate it then titrate the dose up to maybe 10 mg. Gosh I hope it helps my outlook. The pain has just gotten to be too much and I feel like I just don't have the energy to fight it anymore. Sigh. She also suggested upping the valium, especially if I wake up in the middle of the night, like around 4 AM and cannot go back to sleep. She basically laughed at my only taking 1.25 mg twice a day. :( I hate drugs, I sure do. I want off all of them, but that's not going to happen as I realize. So I want to be a happy MS'er at least not a depressed patient. I have lots of living to do, but dragging through each day is so stressful and difficult. I feel so guilty for not carrying my weight in the family. I do feel sad.

I will have blood tests next week on Monday then the new set of MRIs on Thursday. I guess I will be in the machine for 2 hours doing brain, cervical and thoracic or lumbar, I forget. I go back to the Neurologist on November 4th and meet with her and the PA to discuss my options.

I gave them the unused Copaxone I had in hopes it might help someone else who has to wait a long time to get their drug or who needs a free 20 days worth. Also showed Tia my keenfit walking poles as I thought they might benefit another patient with the "wobbles." They are cool for anyone though who wants a better workout when walking. Check them out at

The weather is gorgeous. The owls hoot at night. The male is a huge fellow with a 4 foot wing span and stands about 24 inches tall or more. Rain is in the forecast again for Thursday. Blech!
I am going back to sleep!

At the top is a small picture of the owl's last crop of babies from our front pine tree.

Monday, October 19, 2009

More History - Neurologist #3

Sorry these posts are so out of order. Chock it up to either Fibro Fog or MS cognitive impairment, as I am not so sure which one is belting me over the head right now. LOL

I survived the Holiday's and healed up well from the mastectomy according to my wonderful surgeon. He told me to keep on doing my rehab and get those arms working so I would have full mobility and range of motion and I did and I do! Still kind of weak but improving over the Holidays. What was not improving was the neuropathy in my hands and general weakness in my legs.

I went to Neurologist number 3 in November and first thing she wanted to do was run a 3T MRI on my brain as the earlier ones were so bad, and of course put me on an antidepressant! ARRGGHH. If I hear that again I am going postal and rip someones head off.

I went up to Methodist Hospital and had the MRI. What a cool place and great tech people. It was so loud though. No wonder they gave me huge ear plugs.

While getting the results at my follow up appt with Neuro #3, she kind of shook her head and confirmed the transverse myelitis diagnosis and wanted to do a lumbar puncture for MS.

We set it up but I backed out after reading up on the procedure and that place we had scheduled at did NOT follow the recommended 4 hour laying flat on back post puncture protocol. Yikes, all I needed was to get a colossal headache and need a blood patch. So I canceled it and decided that after the Holidays I would try to get into the best Neurology clinic in our area and see what they had to say. I had lost faith in Neuro #3.

Meanwhile on the breast front (or lack of it!) I found that I could wear a regular bra and put in fiberf oam prostheses and look and feel like a normal human again. What a find. I ordered a few more of the bras from Title 9 and a couple of foam inserts from the Breast Cancer place and had my solution. I also found I could wear my 36D underwire bras and use bigger prostheses and look pretty sexy again with fancier clothes. This is all good. What is a pain is the hot flashes I get since I am officially menopausal after my surgery. Ugh. Will deal with that later. I do sweat a lot under my artificial breasts and its annoying as all get out especially with the hot flashes.

Meanwhile, I am still living on Gabapentin, Tramadol and Valium. My legs are starting to swell in the afternoon and I am tired and woozy all the time. And I hurt.

Neurologist Appt tomorrow

I moved my Neuro appt up to tomorrow since I am having a rather rotten time of it lately. The fatigue is overwhelming and the lower back pain is excruciating. I seem to sleep half the morning then cry for a while and then pull myself together and try to do some stuff in the afternoon. Gosh I hope the snake venom stuff gets here this week!. Cobroxin. Its new and it seems to be just an amazing pain killer!

I am working on my thyroid and adrenal glands, both of which are not being well behaved. I think the solumedrol drip used up the last of the cortisol I was making and left me not only with no stress coping skills but with a really high reverse T3 level. I did my own blood tests this past few months and am treating with replacement doses of hydrocortisone and cytomel. I should be able to clear the Rt3 (a huge fibro problem) in about 12 weeks which should reset my thyroid. I will take the cortisol for a few months too until I build up reserves and then wean off slowly in hope my adrenal glands will pick up the slack and go back to normal. Right now even the slightest though of stress causes me to get all shaky inside and pour out a huge surge of adrenaline.

I will ask the Neuro for some help with the emotional lability, gastrointestinal issues, sleep problems and pain. We will probably go over other choices for DMDs. I am very tempted to discuss Tysabri (gasp) even though the side effects are horrendous (PML). The people it has worked for have done really well at getting some function back and it does have double the efficay of the other DMDs like Betaseron, Rebif and Avonex. It is a once a month infusion at the infusion center and my Doctor is cleared for the touch program and has an infusion center right next to her office. Also Fampridine, (4-AP) is almost ready to hit the market and I want to be first in line to give it a try to get some walking ability back. It has a good safety record at low doses and folks have gotten mobility back and swear by it.

Also might get into stem cell transplant stuff by mentioning the Israeli project. But after dealing with breast cancer, I am not so sure I would be a candidate for it. I would like to do this after they get the hospital in Tel Aviv certified to infuse the stem cells back into the spinal cord as I have read horror stories about the hospital in Athens and don't think I would like to travel to turkey either. Not unless I was healthy of course and on a vacation!

Then there is the depression. Some days I am better than others, but if I miss a good night sleep I am wiped out for 2-3 days and unable to walk, think or otherwise function at all.

Sunday, October 11, 2009

Hell Day

It seems like I have a horrible day every weekend and its driving me nuts. Yesterday I was doing great and did a lot of household chores like packaging berries that Deb and I bought in bulk from Oregon. Cleaned files off the K5 onto a back up external drive and processed photos for the Tennis team. Had a great dinner of steak and baked potatoes. Headed off to sleep but woke up at 1:15 only to find my daughter had not returned from her outing with my car across town. Her curfew is 12:30. At 1;45 she shows up claiming getting lost but never called or texted or anything. I was frantic with worry. Nothing good happens after midnight. Luckily they got back just fine, but it ruined my sleep for the rest of the night. I woke up today with a terrible headache that nothing seems to touch.

I am so tired of gloomy dull days when it seems like the sun is non existent. It is a cold day and I cannot seem to warm up even with the warm thing and covered up with a blanket. I am taking cytomel building up but am only on 3 times a day of 3.25 mcgs. To get rid of Rt3 I need to build up to about 75 mcg over the next 5-6 weeks. I sure hope this avenue helps. Also taking Hydrocortisone to try and regulate my normal rhythm. At least put the skids on the bouncy adrenaline surges. Replacement dose is 25 mg day.

I should have posted this a while back but just finished up now. So the blog is officially a mess.

Saturday, October 3, 2009

I should probably continue with my history but today I am pretty down. I had hypnosis on Thursday and felt good afterward but have not slept well for the last 4 or 5 nights and I am woozy, wobbly and very spastic today. I don't have a lot of pain though and feel like my anxiety levels are less. My eyesight is funky too. I hope I am not going down too fast.

Sunday, September 27, 2009


Maybe it was from the catheter during surgery of just having a hard time emptying my bladder, but along about November 8 or so I saw blood in my urine and ran off the end of the street to see my PCP. She cultured and found bacteria and stuck me on Levaquin for a week.

OH MY if I had known then what I know a year later about that drug and the others in its class I would have declined to take it. It did get rid of the UTI really quickly but my digestive system, still suffering from the anesthesia from surgery and the tramadol got even worse. I began to suffer from horrible gas and constipation, which never was a problem for me unless I hate a lot of beans... then the gas well, heck yeah!

I took my probiotics faithfully and digestive enzymes and still do a year later but still have problem eating stuff.

I noticed on top of trying to get my arms to work that I was feeling stiffer and stiffer in my hips and knees and lower back. I figured it was from the stress, or the fibromyalgia like feelings.

Ultimate Breast Reduction

Finally got to the hospital at like 6:30 AM on the 29th and had to wiggle our way into the building since parts of it were still closed from Ike damage. They did have one OR operating and one floor, the obgyn floor open.
I went into pre op and then had to give a pee sample. Whatever for I asked after straining for 10 minutes to get out a few drops as I already emptied my bladder earlier that morning. A pregnancy TEST? You have got to be kidding??? I could have told them with 110 percent certainty that was totally impossible. Still they felt it necessary. ARRRGGG!

The associate pastor from the Methodist church came up to visit me along with my husband, mother in law and sister in law and a good friend. The surgeon came in and I asked him about getting lymphedema after the surgery and he assured me his patient did NOT get lymphedema. Then they gave me Versed and that's all I remember until I woke up in a room later that day filled with tubes and drains and catheters and a leg pump thingy to keep my blood flowing.

The surgery went perfectly and the surgeon felt he got clear margins and I should be good to go! I asked him, I think, through a morphine haze, if I would need radiation and he didn't think so. Phew! I had to get the nurse to give me something for nausea from the morphine and went back to sleep.

The hospital was extraordinarily quiet since only one floor was open. I got lots of sleep and had a huge comfortable room. I could hear babies in the distance every so often and that's all.
The hospital discharged me after one day, thank goodness, because the food sucked. I had my husband bring me a cheeseburger from Fuddrucker's down the street. Phew! I went home with vicodin, xanax, tramadol and neurontin. I had an allergic reaction to the vicodin within 48 hours and dropped it. The rash took about 4 days to go away and was highly annoying.

A friend of mine had had a similar surgery and she was up and out in 2 weeks. I fully expected to be able to resume my life in 2 weeks. This was so not going to happen. Got two of the three drains out after one week and the last and most distracting one out the second week. Those were so uncomfortable and very hard to deal with with numb and clumsy hands.

The surgeon gave me some exercises to do to get my arm mobility back and although they hurt like holy hell I did them several times a day and by my month return had better mobility than he thought I would. The right side lagged behind as that's where the major lymph node removal and surgery was. It took a few months to totally regain my arm mobility.

Got a mastectomy camisole with prostheses from an online company and it was very comfortable for a while. Finally after the scars were less sensitive I found bra online into which I could put the foam pads and look like a normal human. All the normal mastectomy bras were just horrible, and a 85 year old would not want to wear the ugly things. So glad I found a normal bra with just enough of pockets to hold the pads or the foam boobs I finally bought.

I thought the weight off my shoulders would be terrific and it was! However, going from a double D and losing 3 lbs or so during surgery from my chest, totally threw off my balance. Its only now, a year later that I feel fairly comfortable with my new A-B no weight chest.

I did NOT go back to the Oncologist as I figured I wasn't going to buy their expensive poison so what was the point.

After 6 months the surgeon commented that I was fine and healed up great and very fast in his opinion and to come back in a year. OK, so ends the cancer part. Oh and I never had a day of any lymphedema! Thanks Dr O!

Tuesday, September 22, 2009

More History....Chemo or Surgery or what?

I was totally unravelled by now. Stress is not my strong suit and I try not to get into stressful situations because I worry. Health is a worry. Luckily up until now I had never been seriously ill or even sick with the flu more than once. Colds even were minor things. Wow, Cancer! Chemo. Numbness and nerve pain.

I got a referral to a pain management/Neurologist who ran a bunch of nerve conduction tests with needles and there seemed to be OK signals running. He did MRI's of everything and meanwhile gave me prescription for Neurontin, gabapentin and tramadol for the pain. Oh I previously been prescripted Lyrica for the nerve pain and low back pain. I called it my stupid drug because it really knocked me on my butt mentally and hardly touched the nerve pain. I really felt loopy and ended up stopping it after a week. That made the nerve pain come back twice as strong. So I decided to go with the new drugs, and even though the Neurontin was the older version of Lyrica, this crazy Neuro thought it was a good choice. Tramadol he told me was non addictive too. Also I could continue to take Xanax to settle me down. At this point I really didn't care about getting possibly dependent on Xanax as the pain was excruciating, and making me very anxious. The combo helped a bit, rendering the pain bearable, but the Neurontin made me almost as loopy and lethargic as Lyrica and made my ankles swell some. The Xanax, all of 2 daily doses of a whopping .125 MG really helped me hold onto my sanity. So now I was a druggie after all my life of avoiding drugs like the plague they are. ARRGGHH! I truly felt like a failure by comprising my beliefs.

I decided to go over my choices with my great Naturopathic Doctor. Dr. Bob. Glad I did too. Knowing my pesticide history as he did after helping me get through a bout of chronic fatigue a while back, he advised me to skip the chemo and just have the surgery. Like what does one do when there is a bad spot on an apple? Why cut it out, of course. That did it for me.

I recalled the skeptical look on the surgeon's face when he heard the Anderson people wanted to do 24 weeks of chemo prior to surgery. So I called and scheduled an appointment and went in to talk to him about doing the surgery without the chemo. He felt the tumor again and said why sure, why not? I asked if he thought he could get it all out with clean margins and he said he was very sure he could do that too. I liked his attitude and his confidence. I asked to be scheduled the next day. He laughed. Right.... I did get on the schedule three weeks hence which would have been about a year ago on Sept 15th 2008.

Oh and I figured since there was in situ's in the left side as well that I get a double mastectomy while I was at it. I always wanted a breast reduction and this was my ultimate chance. I had studied my options and it looked like the best for me. No more mammograms, no more chance of the breast cancer popping up later. I wanted the cancer behind me. No reconstruction either. Why? One, I was a smoker and the implant guy probably would not deal with me. Was I going to quit under this pressure. HELL NO! The other options included moving tissue from either my back or my abdomen up to my chest and that would require a second surgery. No thank you to that! Also the double option meant I could have whatever side breasts I wanted when i wanted them. A's for sports and motorcycle riding (those big dudes flop around something wicked on the bumps! and get in the way of tennis or golf swings) B's for everyday wear and D's or Double D's for the sexy going out wear. I liked the idea of the flexibility of the prostheses. ( I still do a year later. Good decision!)

Well, hurricane Ike derailed the plans. Sept 13 and all hell broke loose here in Houston. We stayed home this time since the storm was predicted to exceed a cat 3. Monday morning, surgery day, there was no power and the hospital was totally damaged so no surgery. We ended spent a powerless week living in the RV on generator power in the garage. Luckily the weather was gorgeous after the storm and not hot at all because the wait was horribly stressful and my numb hands and feet were just getting worse.

Finally Monday the 29th of September arrived and surgery happened.... that's the next story.

Monday, September 21, 2009

History Continued...Breast Cancer!

I about freaked out when the mammogram came back with a serious lump and spots in the other breast. The doctor at the mammogram joint wanted me back ASAP for biopsy. So I scheduled one for the following Monday. The mammogram was on a Friday!

Luckily, they gave me a Valium, or rather half a valium, 5 mg before the procedure, and some nice lidocaine to numb the area. The biopsy went fine and then the tissue went off for testing. Not long after the procedure, say within 24 hours, my right hand started to go numb starting with the little fingers and proceeding within a week to take over the whole hand. I could not write, grasp anything and dropped things.

Next I went back for a biopsy on the left breast and as with the right hand, the left started to go numb a few days after the procedure. Ouch! Not only were my hands numb but they hurt like holy hell. Burning pain etc.

My Primary Doc prescribed Cymbalta, like I was deficient in it. OK, being all stressed out now waiting for the biopsy results, I agreed to give it a try. OH MY GAWD!. After the third dose, I almost passed out, dizzy, foggy brained, pulse racing, couldn't breathe! My husband called my best friend who is a paramedic and she and her husband, also a paramedic came racing over and helped me through it. The solution? Xanax. Luckily I had some around even if it was a few years out of date. It stopped the reaction to Cymbalta within 10 minutes. Thank goodness. What a horrible horrible drug. Who the heck created this monster?

Nothing was helping the pain in my hands either and I was getting more and more disabled and unable to cook, write, type or use my camera. Scary!

Then the results came back from the biospy: Cancer. Stage 2, ER+ PR+. And it was off to MD Anderson for the possible treatment options. And I didn't like what I heard one little bit!!!! Remember cancer is big business and although Anderson is the best in the country for cancer, its big enough business that they advertise on the nightly news.

I was told that I needed 24 weeks of chemo then a mastectomy then tamoxifen for 5 years. After having sprayed pesticides for years and knowing I was already toxic I did NOT want chemo at any rate. Frankly I knew it would kill me. I would rather die from falling off my motorcycle than from being systematically poisoned to death. I did have time to research it. I went to meet with a local general surgeon to see about having a port put in. He gave me the strangest look when i said they wanted to do chemo for 24 weeks prior to surgery. That look stayed with me. More on that later.

I researched on the internet for the efficacy of the chemo and red the hundred pages of side effect including losing my hair, maybe some heart damage, etc etc and got madder and madder. Even with the spin on the great odds of surviving with my cancer after chemo, the real numbers were not great at all. Chemo would give me about the same chance of survival as surgery and nothing else. What about radiation? I got another appt with the oncologist and she said point blank that there was no other way to treat the cancer than the chemo and radiation was not an option. I left with no decision.

A Long History: Little Indications of MS.

So the Copaxone was out and of the MS DMDs, it has the least side effects and is not supposed to cause depression. What else is there? I started researching on the internet and got very discouraged at the limited treatments accepted for MS. Supposedly, I have relapsing remitting type, but I am not so sure now.

Had several 'events' during my life that indicated MS but never connected them with the disease. In 1988, I crashed from working too hard I thought, with muscle weakness and overwhelming fatigue, and spent a week in the hospital undergoing all the tests that seemed applicable. Ulcer, upper GI, Epstein barr, blah blah.. all this stuff found out was that I had Mitral Valve Prolapse and general anxiety disorder and left with a prescription for Xanax to take 1 mg once a day and Mylanta for the stomach problems. Well, the hospital rest must have done me good. I took one Xanax and was wiped for the day. I cut it down each day by half and ended up taking .25 mg once a day at my problem time, at 11AM. In a week I was fine again and went on with my life. End of problem end of Xanax and end of mylanta. Back to working out in the heat 8 hours a day doing hard labor. Back to running 3 miles a day. And, I was fine for 10 years.

In 1992, I produced a perfect daughter! During the pregnancy I never felt great like most pregnant ladies do and was diagnosed as possibly having gestational diabetes. I never ate sweets and usually avoided carbs so decided that I would bypass the long test and just eat the diabetic diet my OB-GYN prescribed. It included lots of carbs with protein. I felt pretty bad on it but wanted to do the right thing for my baby. Luckily she came 3 weeks early after I spent 3 weeks on the sofa with elevated blood pressure and preeclampsia possibilities. New Year's Day child, born during one of the Aggies worse football games ever. I had planned to have an epidural but my dear husband passed out in Lamaze class after seeing a photo of the epidural needle. Runs in his family. I decided to forgo the epidural in order to have him with me. All I got when delivering was demerol and just a little of that. Nurse wanted to give me 50 mg and I opted for 12.5. It put me out for a few hours. All went well.

After the delivery, I never lost the baby weight. The food pyramid dictated that lots of grains and carbs were the best thing to eat and I ate the food pyramid and actually gained weight. Before my pregnancy I could eat like a horse and maintain my weight at about 130 which was fine for me at 5'4". Mostly muscle. After the baby, I dropped from 173 to 158 and stuck there like glue no matter how I managed my diet. I was tired, crabby and kind of discouraged that first year.

I went to the regular doctor sometime in this period and discussed the possibility of thyroid problems or Lyme disease. I grew up in New England with lots of ticks and outside in the woods and all. I had worked in Texas in the woods an recalled a tick bite or something that caused a ringed rash on the back of my neck. The local lyme test, the basic lab corp one, was negative. My TSH, I went to the regular doctor and discussed the possibility of thyroid problems or Lyme disease. I grew up in New England with lots of ticks and outside in the woods and all. I had worked in Texas in the woods an recalled a tick bite or something that caused a ringed rash on the back of my neck. The local lyme test was negative. Of course, TSH, was perfect. No thyroid problems then. But the Doctor put me on a month of tetracycline, just in case I did have Lyme, and I did improve somewhat. We never reran the test after the antibiotic course.

I started playing tennis in 1993 and at least got back in shape. Lost a few more pounds and ate the food pyramid like a good girl. Now I weighed 153. Still a good 23-25 lbs over my ideal weight.

Bad things happened starting in 1994. My ex step Dad, (don't ask), Phil, was mistreated with steroids for an asthma attack and ended up in the hospital at the same time my ex step mom, Minn, was being treated for Ovarian cancer here in Houston. They both got better. In 1995, Phil again had an asthma problem and again was mistreated but this time ended up on a ventilator and moved to a Vent hospital in Chicago. We were called to his bedside in mid July. I saw him July 24th for the last time. When we got home on the 25th, my 40th birthday, we got a call he had died. It was awful. It was also a blessing for him.

In 1997, Minn was back on chemo and got sick with a virus or something, went to the hospital, where they insisted on more chemo and she died. My faith in doctor's, hospitals and modern medicine was at a low point for sure.

In 1998, my dearest Dad, who had been diagnosed with prostrate cancer in 1990 and recovered, had a relapse, went downhill pretty quickly and eventually died. I was devastated but unable to go to him as he died out of the country and with a young child in school it was impossible to leave home. He had also asked me earlier that year to NOT come home to be with him. He said to go on with my life. I did as he asked. This basically concluded 3 years of horrible stress with almost all of my parental units dying.

Also in 1998, late summer, I went to a college reunion in Vermont and had a terrific time. When I got home, I broke my little toe trying to avoid kicking the cat, by slamming my foot into a door jam. I limped around for a month then my lower back got messed up and my feet went numb up to my knees. I was pretty sure it was coming from my back after the limping incident. This started in late summer and cleared up on its own by early 1999. Needless to say it was unnerving and stressful.

We built a house, our dream house, and moved in on April Fool's Day, 1999. I had gotten so mad at my weight, at this point, I went to a high protein, good veggie, low carb diet during this time and finally lost my way down to 138. A huge improvement but I still felt drained most of the time. My life was good though! During the building of the house, I spent some time scraping windows with a razor blade and developed bursitis like shoulder problems and had to rest them a lot. Finally, with good chiropractic care and time it went away.

Late July 2001. We took a wonderful family vacation to my home in Ipswich, Mass and then up to Sebasco Resort in Maine. We love Sebasco and before when we have visited there, the weather had been perfect, cool and delightful after the Houston hot humid summer. This year, however, the heat in Maine was unbelievable! It was in the upper 90's every day. No air-conditioning. I noticed one day after playing golf in the heat that the sight in my left eye seemed off. It got worse. I lost the colour red almost totally. It looked grey. Also, the contrast went too. All I could see was sharps and there were no midtones. I was a bit scared. Also my head ached which was not normal for me. I almost never got headaches.

When we got back to Houston and the sight had not resolved I made the trek from eye doctor to Ophthalmologist where I failed a visual field test miserably in that left eye. The optic neuritis, as I found out it was called, eventually resolved on its own over a few months. That was the first time the words Multiple Sclerosis came up. Why would I have MS? Not me surely. I blew it off.

Meanwhile 911 happened and it was very stressful even here in Nowheresville Texas. My husband was away playing golf and I was very unsettled being home alone.

When he got back, I went to a neurologist. She was a total ditz and all my other tests done in her office were fine. She did say well, it could be MS, I just don't know. We can start you on medication that might stop it for 2 years. She was way too vague for me and being a NO MEDs type person, I opted to forget it.

Somewhere in and around 2003- 2004, we took an inital RV trip to north of Houston with some friends to see if RVing was going to be fun. It was but we were fishing by a pond and I got over 50 chigger bites. No big deal except for the incredible itch. Well one of the bites never really healed and i thought it was just because my bra strap rubbed it all the time as well as the car seat belt. Eventually it go worse and nothing would heal it up. I wore a bandaid for years until last summer, 2008.

June 2008. We took our daughter to tennis camp and took the RV to Garner state park where we going to ride the three sisters on our motorcycles. I had been feeling really tired for the past few months and was getting by on a daily nap. It was incredibly hot! While I was showering, I felt a lump in my breast that had not been there before. That unsettled me to no end. The first day we rode the sisters and it was fabulous. Riding these little roads is a motorcyclists dream and it was on my bucket list! Little did I know it might have really been on my bucket list. The second day we started out but by mid ride I really felt horrible and overwhelmed with the heat and limped my way back to the RV where I slept all afternoon. My feet had been feeling kind of numb and my lower back was aching most of the time. The rest of the trip was a long nap. The lump thing bothered me too.

As soon as I got home I went down the street to my primary doctor who took off the skin cancer under local anesthetic, got clear margins, and did a pap and felt the lump and told me to get a mammogram ASAP.

It was at the end of June I finally got in to see the mammogram folks. More later....

MS Therapy

I started Copaxone at a co-pay of $484.00 a month (GASP!) but had a flu like reaction on the 10th day which was NOT supposed to be side effect of the drug. Oh yeah, right! After calling the company and hearing that, with a suggestion I might be getting sick ( I never get sick, my immune system is bored stiff and attacks me when it has nothing better to do, which is all the time) I called my Neurologists office. They confirmed people have the same reaction. Rather than take an antihistamine then then Tylenol, (which knocked me out for the whole day when I tried it)then the shot ,then more Tylenol, I stopped the copaxone. I still have lumps in my abdomen where I took the shots. For $484.00 a month I need a better quality of life then constant sleep or flu like symptoms with temps of 103. The hell with Big Pharma. And the more I read about the efficacy of Copaxone and the other MS drugs, the more I was turned off.

My whole year has been about seeking an alternative to MS drugs, fixing my fibromyalgia and holding onto my muscles and my cognitive skills.

Welcome to my world...

It's mid September 2009 and I have survived the worst year of my life. Last July 2008 I was diagnosed with basal cell skin cancer, had that removed, with stage 2 breast cancer, had my hands go numb after the biopsies, survived Hurricane Ike, had a double mastectomy, lost 15 lbs (not all breast tissue, just to clarify), was diagnosed with MS.

I opted not to have chemotherapy due to my intimate relationship with pesticides from a long career as horticulturist from which I became toxic. Chemo would have killed me. I am sure of it. So I had the cancer removed. Bye Bye!

To find the MS, and transverse myelitis, I had a gazillion MRIs of my brain, cervical spine, thoracic region and lumbar region. There are lesions in my brain and one rather long one in my cervical spine which probably is causing most of my numbness and other MS problems.

I am on Neurologist number 4 as the rest either shook their heads, loaded me up with pain killers, or offered antidepressants and demanded for more tests. My current neuro is a gem, as are her staff and PAs. I relented and had a lumbar puncture which confirmed the MS last January and immediately got treated with a 4 day Solumedrol drip. UGH! That was supposed to make me feel so much better but I am still doing battle with ceaseless Fibromyalgia from the steroids.