Tuesday, April 24, 2018

The invisible hammer and knife are getting bigger

I haven't updated in quite some time for a few reasons.

1) Moving
2) New invisible pains
3) Added stress

Moving:
We had no intention of moving until 2019 after Mike finished his bachelor's degree. Even with the neighborhood's safety declining, we figured we would be okay. A police officer reassured us, "I'll add you to the list. We are keeping a VERY, very close eye on your neighborhood." But we received such strong inspiration that we decided to follow through. Years before when we tried selling, our house was on the market for 6 months with only 1 showing. This time we put it on the market at Christmas time with low expectations. However, 6 WEEKS later we had 4 showings and 1 incredible offer. I'm glad we followed inspiration through that process as well, because we told the realtor to wait. We waited the perfect amount of time and instead of paying to get out of our house, we made the exact amount of money we needed to pay the deposit on our rental. (That's another story for another day.)

We thought we would buy. But, instead, we found a lovely duplex to rent, acted quickly, and are now in a wonderful neighborhood. We have TWO bathrooms (full size sinks), full size washer and dryer, insulation, a garage, updated electrical, and so many other blessings.

Pain:
I tried to avoid a MS relapse or exacerbation (a usual occurrence for me with moves or big changes). We were so lucky to have help from many amazing people. However, a week or two before we moved I started having new stabbing pains. I felt like I stepped on a nail, my elbow was snapped out of place, like a hammer had broken the bones on the top of my hand (or a knife was stabbing me), and my pinkie and ring finger were broken for days. I also woke up sometimes feeling like my head had "fallen asleep" (like when your foot falls asleep and it cramps, hurts, tingles, and is numb). Odd feelings that were all NEW. This is my "good side," and worried me immensely that MS was again eating away at nerves. I hurt from the top of my head, down to my heel, and everywhere in between along the left side of my body. Granted, none of it is near the level of TN/ON/GN/AD, but it scares me that it could become like all of those.

I emailed my neurologist but she just thought it was a MS spike due to stress. Her solution was to just deal with it. <Thanks> I'm usually the one who says, "No biggie. Everything is fine." But really, if I mention something being wrong, you can count on it being a BIG issue. When you have MS there is so much unpredictability and fear. What if this is permanent? This is new, so what does that mean? Typically a "normal" neuro would say, "Come in," or "Let's do a MRI, high dose steroids, or talk about a plan." My neurologist told me before that if I ever get a new lesion that I will have to go on a disease modifying drug. But, since I'm one of those uber rare patients who actually gets worse with the meds, she would hold off. Just treat the symptoms...until...

Truth be told, my neurologist has been less than fabulous. There have been way too many times where she has messed up my medication refills or changes. The worst was this last time where the pharmacy tried contacting her three different times. I had to "borrow" anti-seizure medications from the pharmacy and ran out again. It took tears and pleas in the pharmacy to my neurosurgeon to get me more (and he talked to her...which finally fixed things). It's especially worrisome because if you stop anticonvulsant meds cold turkey you can GET seizures and one in particular never ends. Thankfully I meet with my neurosurgeon soon and again hope he can pick up the slack. It's sad when your BEST doctor is the one who can do the LEAST for you.

I decided not to push answers about my new pains with my neurologist and am pretending it's a blessing in disguise. I don't want a new disease modifying drug (coupled with new permanent disabilities). I'm pretending like the feeling of half of my head falling asleep (oh, the irony) is just a sign of healing. Mind over matter.

Thankfully after almost 2 months a few of my pains have subsided (head falling asleep, broken pinkie and ring finger). They are hitting less frequently and less powerfully. The stabbing pains are still there intermittently, along with muscle and joint pains, but it's all nothing compared to my face. I'm trying to get back to eating WHOLE FOOD PLANT BASED, regularly visiting a massage therapist, chiropractor, doing stretches, and following a stricter sleep schedule.

I tried eating a Keto diet per my endocrinologist's recommendation. The last time I'd met with her my anxiety was quite high. I had a goiter, my thyroid had grown too much and was causing compression issues, and she recommended SURGERY to remove my thyroid. We spoke for 5 minutes about surgery and she tried reassuring me it would be just fine. She then said I could eat Keto between then and my next appointment in hopes of improvement. {She also wasn't that great at communicating and with her records. ugh}. This time when I met with her, I explained that the Keto diet was torture. My body was struggling and she was quick to say that some simply don't do well on it. Stop immediately. I also asked her about surgery and what she thought this time. She said, "Don't take this the wrong way, but I feel like you would be a patient who would have EVERY complication and problem. You remind me of one other patient of mine. We removed her thyroid, her body is NOT accepting the thyroid medications, and now her levels are OFF the CHARTS!" I was relieved because my neurosurgeon also recommended avoiding any possible surgery in the future. (Mike asked him what he thought about a thyroidectomy after the endocrinologist recommended it.) She changed her tune so much from the last appointment and this time we were on the same page. I'm hoping I can tweak my diet further to bring relief at least to some extent.

We still don't know for sure if my left side pains (from the top of my head all the way to my heels) are MS related, muscle related (sleeping and walking issues while my left side tries to over compensate for my right side), or a combination of the two. My chiropractor thinks it could be a combination of plantar  fasciitis and possibly a MS exacerbation. But we are working on it all as if it's just walking, sleeping, over use, and stress related. My stress has been higher because of a few other things and we know stress and heat are the WORST for my MS. I'm just hoping and praying that MS isn't eating away at the nerves in my hand too.

For now I'm just trying to go with the flow and do what I can. Even with the new issues, I am doing sooooooooo much better than I was last year. I can handle this stuff! It's funny how feeling like your hand was broken in several places is no biggie. Others have literally had to lend a helping hand and I sure am grateful for their outstretched arms to lift me. I also appreciate God's grace, the cooler weather, and my cute little family. Life is crazy. Mostly just crazy good. =)

*New added stressors: I'll write about it later. Good stress.*