MS Update: I'm Getting Better!

I KNOW your prayers are working! I feel such a relief that I've had so many people praying for me when I couldn't find the strength to pray for myself! And, now I'm at a place where I'm confident enough to say that while I'm still climbing that uphill battle, I'm gaining so much ground and getting a lot stronger everyday. I'm almost a completely different person than I was this time last year. And I thank you for praying for that! So... what's changed for the better?

The pain in my neck is manageable on a daily basis, so I'm not holding my head crooked anymore. I still have issues with aches and weakness if I ride in a car or have to stand for an extended amount of time, but I have a neck pillow that helps if I rest my head on it from time to time.

The daily chronic migraines have shifted to regular daily headaches. Sometimes the headaches come every other day if I'm lucky! Now you may cringe at the thought of having a headache pretty much every day, but if you had a migraine almost everyday for over a year, you would feel SO blessed that the pain was reduced to a simple headache. The same kind of stress headache that every normal person gets from time to time. I don't even have to take migraine medication anymore! I take ONE goody powder either every day or every other day. I have to be careful taking Goody powders, because I'll get bleeding stomach ulcers and horrible heartburn if I take more than one each day.

Hmmmm.... What else has changed?

The pain in my joints still aches, pops, cracks, and wiggles around everyday, but one tiny muscle relaxer, Flexeril, helps me keep the pain manageable (such a blessing!). I feel stiff a lot of the time, but I could also contribute SOME of that to sitting a lot. I sit in the floor when I make jewelry, paint, upcycle my jewelry boxes, watch movies, write blog entries, etc... Pretty much just about everything I do is done sitting on top of a pillow in my living room floor, propped up on a huge lounging pillow. This isn't new, and I've been a "Floor Person" for months, since around November 2011 when I started having really REALLY bad upper back pain and dizziness. I wasn't nearly as nauseous when I was closer to the floor, and the room didn't spin as bad if I was "grounded." And the pain in my upper back could only be relieved if I was sitting in the floor, propped up on something.

The pain in my upper back was almost unbearable. It felt like someone was squeezing me as hard as they could right around my bra strap. It was hard to do much of anything without a lot of extra effort, even breathing.

• Good news, it was just the MS Hug, (also referred as Girdle Band pain) and it is something that comes for a few weeks and then GOES away. 
• Bad news is it will most likely come back in the future. 

I guess after the Girdle Band pain left, it just felt normal to do everything sitting in the floor. After all, having the Girdle Band pain force me to do everything in the floor MADE me learn how to adapt to doing a LOT of things sitting down. And I guess I'm just a lot more comfortable there now! Whatever works right?

Moving on...

Most of you know that I cut off all my hair last summer. And when I say "all my hair," I'm not kidding. The hair on the back of my head was shorter than an inch long. Maybe at one point it was half an inch, if that. I was having so much sensitivity on the back of my head and neck that I couldn't even stand my hair brushing against my neck. Finally, I just went in my bathroom one day and cut off all of my beautiful curls. I know I did what I had to do, and last year I wasn't in any position to keep my long hair fixed, washed, dried, curled, etc. In saying that, I am now growing my hair back out again! It's a long process, but I'm enjoying each inch I get back! About a year and a half, and I'll be back to normal "hair-wise."

My hair length as of March 2012

A BIG issue: My Weight has gone up quite a bit. When I got married in March 2011, I weighed about 93 pounds. Now I weigh about 125, give or take a few pounds. I struggle with accepting this weight, because I am making a conscious decision to maintain this weight instead of losing back to where I'm comfortable, which is about 105-110 pounds.

I'm really fortunate weight-wise, and Scott doesn't fail to let me know this (although I contribute it more to will-power than genes). Basically all it boils down to is if I wanted to lose 15 pounds, I have enough self-control not to eat sweets, drink only water, eat healthy, etc until I lose down to my goal weight. It's hard work, but it's doable and I've done it before many times.

Well, Scott and I still want to have a kid or two in the future. Not right now, obviously because our home is so small, the kid would have to sleep in a carseat on the porch. Maybe in a year or two (or three), not quite sure. What most of you don't know is before we got married, we planned on trying to have a baby as soon as we said "I do." Like 5 days after we returned from our honeymoon, I started to go downhill healthwise. Instead of thinking how hard it would be to take care of a baby AND me, we were thinking more like, "What if I only get worse from here and I can't ever have a baby because my body is so weak?" So, we just decided to keep trying. And month after month... nothing. I've had several female surgeries, so there is always the chance that it could take longer than normal to get pregnant. (It took Scott and his ex-wife about 18 months to get pregnant with Izzy, so he really wasn't as stressed about it as I was.)

In mid fall 2011, I was so weak, we were having a rough time dealing with the effects MS was taking on our new marriage, we weren't any closer to having a baby, Izzy and Evan had a lot going on, and the toll of my missing paycheck was REALLY starting to hit hard, and it all just built up and up. We had to deal with each issue one at a time. We decided to move to Valley to be closer to the kiddo's and their activities and save money on rent and gas each month, and we decided now was NOT when we needed to bring a kid into the chaos we were drifting through. I needed to focus on myself, my health, my marriage, and getting control over my own life back. I was disappointed the first couple of months, but I had an instant relief from the pressure off my shoulder each month.

Good news is my doctor said that when we do want to try in the future, I need to come see him about taking Clomid or a mild fertility drug to boost the "process." So how does this have anything to do with my weight? Well, I was really malnourished when I was so skinny, and my low weight made all of my female issues really "irregular" and "inconsistent," making conceiving a baby really difficult, if not almost impossible. That could have had a HUGE effect on why we didn't get pregnant (although I think it's nothing more than the fact that God knew that I would never have been able to take care of a baby the way I've always dreamed about. I was way too sick and far too depressed to have been able to be a good mom... I believe God will send me a munchkin when HE knows it's time!)

 So, the way I see it is I'm at my ideal weight. I am not going to work so hard to get down to a comfortable weight only to have to gain it all back in a year or two when we start to try again... I'll just stay where I am to make it easier in the future, so if we encounter fertility issues no one will be able to blame it on my low weight. I can do this... (A LOT of books I've read talk about how the first year after a MS diagnosis is one of the worst you will ever have, if not the worst. Not only because of the pain and adjustments you have to learn to deal with, but because of the horrible depression a lot of people deal with as they grieve about their diagnosis. So true! I'm in my second year and I'm almost a completely different person, a lot of which I contribute to me overcoming a year of deep depression!)

Well, I've told you about the struggles I've overcome, the pain I've fought, the prescriptions I've chunked out, and how I'm getting stronger every day. I haven't told you about my most debilitating symptom that I will always have, due to where my brain lesions are located: Cognitive Dysfunction and Sensory Processing Disorder. This is the main symptom that keeps my "working shoes" still sitting on the shelf, because I haven't learned how to control it. I'll explain it in my next entry, so don't forget to check back for Part 2! It's pretty interesting. Well.. I'll try to make it interesting for you. You never know who you will meet in the future that has MS, and you would like to know a little something about it wouldn't you? I wish I had known about it.

UPDATE: Since I posted the information above, it has come to my attention that I may have been too vague or misleading in some of my words. Just to make it clear to everyone, we are NOT trying to have a baby right now! We are still trying to make sure my health is stable, we're still organizing and settling into our home, we're enjoying our special time with Izzy and Evan and focusing all on them, we're still enjoying our quiet times and loud crazy movie nights with each other, all of which cannot be done with a new baby. While we DO want 1-2 more kids in the DISTANT FUTURE, we are NOT trying to make that happen now. I'm sorry for those who I mislead or stressed out! I'll try to be more clear in my future entries.