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I got married when I was 28 to Scott and had a son (Jonathan) about a year later. Jonathan was a little early coming in to the world. I had what is called IGR (intrauterine growth retardation), they ended up taking him at 8 months term since he would grow outside me better than inside me! My body was stealing the nutrition from him. So, although I gained 30 pounds, he only weighed 2 lb 12.5 oz! I'm still holding onto some of those pounds! He's 26 years old now! Motherhood changes you! You wear your seat belt all the time and listen a lot harder to everything going on around you. It's a little less about "me", and you find this little person taking up a lot of your time and energy! Well, I still managed to find "me" time, I had a lot of good baby sitters! I was a pretty selfish person for quite a number of years. 
I started going to a Mom's bible study that I really enjoyed and loved the ladies involved in it too. I think it softened me quite a bit. I was getting into the Word of God and growing closer to Him in a way I hadn't before. Little did I know how much I would be needing this...
When Scott and I were 36 years old (our birthdays were 18 days apart - me being the elder!), he was diagnosed with Chronic Myeloid Leukemia (CML). Well, that was a shocker! Nothing happened at first, then about 6 months down the road they suggested he start on Interferon shots. He did this for quite some time and it put him in deep remission. As a matter of fact, one of the doctors at a hospital in Philadelphia said he was "cured"!! Boy, did we celebrate that day!
Shortly after that, we moved to Florida for a job he was offered. This was in July of 1996. Things were great, we were enjoying life and the beach and being with friends when wham! Blood work came back that "it was baaaccckk!" Oh, my! I was not ready to hear that! We started looking in to a bone marrow transplant right away as it was back as acute no longer chronic! Scott had no family matches for donors (lots of loved ones tried <3) so we looked into other possibilities. After checking with Moffitt Cancer Center here in Tampa and Fred Hutchinson in Seattle, we went to Case Western in Cleveland, Ohio for his BMT.
Unfortunately, he had to go through too many rounds of chemo and radiation and I believe the radiation burned his organs so badly, that by the time the transplant "took", his organs had started to shut down one by one. He passed away on November 26, 1998. During this time, I cannot begin to tell you how much I relied on God to help me through day by day.

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In the Beginning…

Now that I have given you the low-down of my health history of this disease I am battling, let me go back and tell you more about me and my life…

I was raised in Pennsylvania, north of Philadelphia; in a little rural town in Bucks County called Hilltown. I have 3 siblings, 2 brothers and 1 sister; but I am the baby. Probably, an “accident” as I was 6 years behind my youngest, older sister.

Our home was not a “religious” home; I probably had a closer relationship to the Charlie Chips can than I did with God when I was a little girl. However, we always said grace before eating and went to church on Sundays. I do remember one particular Sunday that I didn’t want to go to church and put up a little fight, and my dad spanked me (the only time I remember that happening) and told me to go get dressed for church.

When I got a little older, about 13 I’d say, we used to go camping quite a bit in the summer time and we went to a campfire revival meeting where when the speaker asked if anyone wanted to accept Jesus in their hearts they were to raise their hand. With my eyes closed (all were supposed to do this), I raised my hand and really meant it. My mom later tells me, she knew (did she peek?) it was me that raised my hand when the man said “Hallelujah, young lady”. Unfortunately, there was no follow up to my beginnings of this small step of faith. My parents were not into this “born-again” thing I wanted to try, so it kind of fell through the cracks of my life.

Later in years, when I was about 18 I got involved with a group of kids that were going to church and one boy in particular attracted my attention. It’s not the noblest reason to attend church but it got me there. Unfortunately again, with this kind of attitude, one doesn’t get out of something what one should. So, my world continued on “sowing my wild oats”.

HOW IT ALL BEGAN......

HEALTH HISTORY

In July of 2010 I experienced an vision loss in the center of my field of vision that lasted about 15-20 minutes. I went immediately to my eye doctor and he did a good exam saying nothing looked wrong to him. I then went to my Primary Care Physician, and we decided to not do anything more at that time but if I were to experience another episode we would explore further avenues.

In early October I started to get tingling and numbness in the smallest 2 fingers of each hand. Then weakness in both forearms started and I was having trouble turning things (keys, doorknobs, etc.) and writing so I thought I would go to my chiropractor. I thought if I had my neck and upper back adjusted, it might be relieved. This was of no help. But he tested my strength and a few other things and didn’t believe the issue was spine-related. He was the first to mention a neurologist.

My legs then (this was now Nov) started to get weak and feel like they were going to buckle out from under me if I wasn’t careful. I called my PCP to order some blood work to be done and we found out I was vitamin B12 and D deficient. Started Vit B12 shots right away and got some Vit B12 sublinguals to take also. I still was getting weaker and fatigued quickly. I then called to try to get in to a neurologist. My PCP suggested a doctor but he had no appointments available until mid-December and I felt I needed to see someone much sooner than that. I was able to get an appointment with another local neurologist. He had me do several tests over the next week. Dr did an upper body nerve conduction test that really surprised him and then had me come back for a lower body test that wasn’t as bad as the upper body. He then wrote scripts for a brain (with contrast) MRI (to see if it was M.S.), EKG, heart monitor for 24 hrs, and an ultrasound of carotid artery. Then insurance said "NO" to the spine MRIs. Waited about week and a half to have doctor try to talk them into it but they still determined that it was "not medically necessary". By then I was continuing to deteriorate so bad that I could hardly function at work or feel comfortable to drive and I was getting so weak I couldn’t do hardly anything without help. I was getting twitches and tremors all over my body and some intense jabs in muscles like a stabbing pain. Also, my husband noticed I wasn’t able to recall things as easily as usual and speaking was both difficult to come up with right words and also to speak them. I noticed a ‘mushy’ feeling in my brain (just not clear). I scheduled an appointment for a second opinion but couldn’t get anything until Dec 13th and still getting weaker. On Nov 30th my fingers (pointer and middle) on my right hand froze and crossed several times as did my middle and ring fingers on my left hand did the same. The next morning I could hardly lift my arms to wash my hair they felt so weak and heavy. That day at work (my last day) I could hardly do anything without just being so exhausted. At that point I went to my PCP and that is when we thought I better get into the hospital to get the tests I needed to figure this all out.

Got admitted to hosp and they started poking, prodding and keeping bodily fluids to test, examine and grow things from. Nothing, nothing, nothing...regular doctor was going to send me home on Saturday but neurologist wanted to try one other test, a spinal tap but had to wait until Monday to do it. That was done and went home to wait. Tuesday got the call that elevated levels of protein were found in my spinal fluid and that he wanted me to see another neurologist in St Petersburg.

Local doc was able to get me in to see him on Friday, Dec 10th. When we went down there I had to have another nerve conduction test (ouch ouch) and then saw the doctor. He told me I have CIDP.

So, doctor immediately started me on 20mg/daily of prednisone (steroid) and requested approval for IVIg. I started the IVIg Jan 10, 2011 and get them every 3 wks. We started weaning me off the steroids in Jan and was off them by March 30th. Still receiving the IVIg every 3 wks but in July I wasn’t finding it being as beneficial as previously. By mid July I was about a weak as I had been in December, so my neuro put me back on steroids again, 10mg/day. Still was extremely weak and only recovering about half as good for only about 7 days between treatments. The middle treatment in July of IVIg was like having nothing done at all. At this point, using a walker due to the weakness was necessary and self care is minimal. Not cooking or cleaning much at all and bathing is a major challenge. When I fell in the shower and broke a few tiles, we had to replace the shower stall area and added hand holds and now I use a shower chair. It is still very difficult to wash myself but I do the best I can since I really don’t want to lose that bit of independence.

So last treatment in July we upped the prednisone to 15mg/day and see where to go from there. I am about mid-treatment time right now and strength is still low and stamina for anything much is poor also. Heat/sun do me in, if I have errands to run I am whipped quickly.