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.

Children Living In Abandoned Bus: INFURIATING!

Usually when I write a new blog post, I try to be a little upbeat and leave the whiny-ness at the door. Or at least I try to keep it short and get to a more cheerful point to write about. Unfortunately, this post is a more controversial topic, and I'm quite angry as I write it.

I try to take news reports with a grain of salt. By doing that, I have to remember that most of the time the news has most of any popular story at least half wrong. I learned this while I was working for the Department of Forensics, and I can't believe how much stories can change from night to morning due to the media coverage. I know they're just posting stories they hear, but I wish there was some way to verify the facts for sure before some stories are published. In saying that, I'm trying to have an open mind about the story I'm about to share with you, but it's really hard to not see the whole picture. I'm praying that some new news will come out in the short future that will make this story seem a little less... pathetic.

In Splendora, Texas, two children, a girl age 11 and a boy age 5, have been discovered by authorities to have been living in an abandoned bus that was converted to a home. One of the bad points is that the kids have been living there since 2009!! Here is the story and information links, so you can see it for yourself. Make sure you watch the video and read the story, because they are both very informative. I'll write more about it after you watch.

Children Living In Abandoned Bus (VIDEO)

http://abcnews.go.com/US/wireStory/children-found-living-abandoned-bus-texas-15874754#.T1kBgDE7WwA

When I first read this story and watch the video showing the outside deplorable conditions, I immediately had a lot of questions that I'm sure law enforcement officials are still trying to figure out. One could say that the parents are lousy individuals due to the fact that they are in jail for embezzling money from Hurricane Katrina victims. Lousy "Individuals" yes, but does that make them bad parents? No. What makes them bad parents is the fact that they hopped off to jail and didn't alert officials that maybe their two kids at home needed to be taken care of. I find it absolutely horrible that the parents are warm, dry, and fed 3 meals a day  all the while knowing that their children are pretty much fending for themselves. How can you even sleep like that?

I commend the Great Aunt for providing food for the children and for working to try to support them, but I believe there comes a time when you have to admit that maybe there is a better place for the children to live while you work to secure a stable living environment for them. The children said they were home-schooled, but wouldn't it seem easier to send the kids to public school all day and know that they were warm and being supervised in a learning environment? And there was a neighbor that said the child told her daughter that she only showered twice a week. Where did she take a shower? And if the neighbor knew this, I wonder why she didn't alert the authorities before now about the conditions. I just know that if there was an abandoned school bus next door to my house and I knew that two little children were living there, running around without shoes, living with no adult structure or supervision, I would try my hardest to make sure those children were in a stable home ASAP. And I definitely wouldn't be on national television telling the police that I knew about the condition of the children and I did nothing about it. She admitted that she saw the kids running around outside at night with no shoes on...

I'm thankful for the person who secretly alerted authorities about this bus and these children, because at least now these children have a fighting chance of learning what the life of a child should be like. The 11 year old girl has so much responsibility for a child, caring for her younger sibling, and her years to be a little girl have been stripped from her. The filthy living conditions are probably the only place the younger child has ever knows, because the authorities believe the children have lived there since 2009, meaning the child was only 2 years old when he started living in the bus.

I just look at my own childhood, and I can't imagine how different my life might have been if I didn't have such a wonderful loving family to take care and raise me. They taught me about life to make me the woman that I am today, and that foundation is so essential in making sure I myself remember who I am. Who was going to teach these children what it is like to be a responsible adult? They're own parents didn't have that figured out. And talking in the here and now, who is going to teach them how to be children or help them learn how to have manners? Who is going to show them how you are supposed to treat someone that you love?

This is a story that needs to be wrapped in prayer. More than once we've all heard horror stories about foster homes and siblings being split up. I pray that these children are put in a loving home and given all of the love and compassion that they have been lacking. I pray these children are given a home with parents who have the necessary patience to guide these kids in their lives. Sometimes, it takes one person to make a difference in another life, and in this case there are two little lives waiting to be loved. I just pray that love is what they find!