Physical therapy has been going well. I am now up to 20 minutes on the exercise bike, still doing the yellow ribbon stretches, the calve stretches, BAPS, the black weight machine thing (I don't know the name), towel scrunches, and we added a new one where I step on an exercise ball thing (attached to a weight machine) and balance. It's got me working hard and it feels GOOD!
I'm midway through my massive list of appointments for March and April. Today was my second appointment at the Fibromyalgia Treatment and Learning Center. I was nervous all morning but telling myself not to be. I knew the blood test results were in and I alternated between thinking the worst and wondering if they would find nothing at all.
What I got was something in-between.
This time I saw the other doctor who works at the center. He too was extremely informative and kind. No belittling fibro here. I love going to a doctor who not only believes in this disease but who specifically targets it. The outcome is completely different from going to a clinic or hospital where they have no idea what to do with you and your myriad of ailments except pass you off to someone else or else prescribe pill after pill instead of actually tackling the actual disease.
Today would not mean a lot to anyone else because what we did was go page by page over the blood tests submitted last month. Remember the 16 vials of blood drawn awhile back? The hair samples mailed off? Well, today was the day for some answers.
I will not bore you with the specifics... how much I should up or decrease certain supplements, when to go back in for more blood tests (4-6 weeks), etc. Instead I will tell you that out of all of the blood tests (one did not have an accurate reading and needs to be re-done, and another for Epstein-Barr Virus was not tested yet) what was revealed is that sometimes in childhood we get certain viruses but our body naturally protects and fights them off. Some of those infections can still live in us and lay dormant. I have a viral condition called HHV-6.

I got this information on a site and paraphrased a little:
"Known viruses (such as EBV, Ross-River virus, and HHV-6) can undergo adaptations that allow them to hide from the immune system. They become "stealth viruses" that literally sneak up on our body. Usually when a virus enters our bloodstream our immune system's antibodies attack that virus immediately. But "stealth viruses" are able to hide themselves from those antibodies. They do their damage to our cells on the sly. Because these viruses are so skilled at hide and seek, some often remain undetected even after an all out attack on your immune system. Meaning long after we recover from an intense illness just a bit of the virus can hang around making us feel below average healthwise."

Wow, isn't that a mouthful?

The second result is that I have a mutation defect (60% of the population have this issue): MTHFR - (Methylene-tetra-hydro-folate-reductase) is an enzyme found in the cells of our body. It is needed to metabolize (break down) homocysteine, an amino acid found in the proteins you eat. There is NO CURE for MTHFR mutation. If you have the mutation, that's the way your body is made however you can lessen any risk factors you have by taking B vitamins, Folic acid and baby aspirin. MTHFR mutations are hereditary. Families with significant early cardiovascular disease or recurrent pregnancy loss might benefit from clinical investigation."
Hmm, both of my parents have heart issues and I did lose a baby. Could this have contributed?

Next up we went over Triiodothyronine. (T3) is a thyroid hormone and plays an important role in the body's control of the metabolism. The normal range is 6-10 and I am at 11.6, which means I got another fun medicine to take to increase my energy. The doctor was super specific about not doing too much when I start to feel energy. He was insistent that I rest and not push myself. Meaning I can do what I do (take care of Mylie, physical therapy, laundry, etc. Whatever the day brings.) but just as all of these months I have to prioritize and not overdo it. We talked a lot about how this is a lifelong process and that it will take about a year and a half (depending on my body) to stabilize and bring me to a place where I am not just in "survival mode".

I told him how I started to get anxiety back in September and that 2 months when all was super stressful at the home-front I started to have panic attacks. He asked how often and I told him once a week or every couple of weeks depending on the stress. He prescribed xanax (after I told him diazepam has worked) but only for extreme cases of anxiety. I am not a fan of pills so it won't be a problem to not abuse them. Yuck. I hate medication, but I must take these supplements and all to manage these things tearing apart my body.

We discussed how Fibromyalgia is actually a Neuro Immune Disorder (affecting the nervous system and the immune system) and that when stress comes my body basically gets into "fight or flight" which is where the panic attacks come in. The stress basically sucks EVERYTHING out of me and is focused on only the stress response so I start to get hot and freak out and feel like I have no control (nice to know I'm not just nutty!). He said the charcoal caps could help relieve anxiety but for extreme cases to take the xanax. I had to explain how stressful it was with all of the baloney the last couple of months. He could tell I'm of sound mind and even remarked how cheery I was. That's a plus. We discussed diet some more and I told him I can definitely feel the difference if I've had sugar or whatnot. It REALLY does worsen the fibromyalgia.

All of my hair sample stuff came back fine. I was high in aluminum, barium, and silver and low in lithium, phosphorous, cobalt, and germanium. He suggested I start using an aluminum free deodorant. These aren't major issues so I'm good in that area. :)

I did not have enough funds to get the stool kit test. Maybe next month. I go back in May, and I can tell you I am quite pleased thus far. I am grateful for much needed prayer, financial provision, and doctors who know what they are talking about. I am not 100% but I am starting to understand my illness better, have increased energy (not quite Wonder Woman status but more then I've had in a really long time), improved sleep, and the belief that I AM LIVING! I am exercising again (thanks to physical therapy) and eating healthy. I am smiling again.

I know this is a battle. I know I cannot push myself. I know it's a process. Sometimes the dreams I have get so huge in my head and I can't wait until they come into fruition, but then I remember my God has me exactly where I need to be right now.

This is an uphill climb. There are no shortcuts. I am working hard to live a life worth living. Not giving in to some disease that is trying to stake it's claim. I still cry sometimes. I will cry again. I have "good" days, so-so days, and miserable ones...

but I am getting better day by day.

Emotionally I am full of JOY! There is no bowing down to this monster.

Right now I am praying for more sponsors and the ability to keep up with the medications via donations. It was suggested (Thanks Korinne!)that I put a donation button on my blog but for the life of me I cannot figure it out. There is an important medication for my thyroid that my insurance will not cover. It cost $103.99 for 60 pills. I am praying that the funds will come in these next couple of days. God knows my needs. Praise for that!

Thanks for reading.
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