Going back to the beginning

I have had this blog now for over a year and have never felt that I really had enough to say. I have been taking a new journey that has been a pretty scary one. For starters, I will go back to the beginning of this journey:

When I was 9 my aunt took me to get an eye exam as I was doing poorly in school and she suspected I needed glasses. Turns out I was as blind as a bat. During my exam the doctor made mention that I had "arthritic looking eyes" at 9. I remember this statement but never was it questioned. Fast foreward to high school. I was on the track team and was having a lot of foot pain and found out I had a bunion that had to be removed because it was causing so much pain. So, at the age of 14 I had a bunionectomy. After the surgery the doctor said that "I had the bones of an old person." Again, we didnt question it but as I got older I started having a lot of knee and back pain but so did my dad so I figured it was just genetics, bad back and bad knees.

After my second child was born I started waking up in the mornings with extreme weakness in my hands. I can recall taking my husbands hand and squeezing it as hard as I could and asking him if that was hard and he would laugh. This went on but didnt really worsen. I went to the doctor and asked for some blood work for RA. Everything came back normal. Then 4 years later I delivered our last baby. He was such a cute little baby, almost 6 pounds and a month early. He was such an amazing baby.  I took him home to meet my family when he was about 4 weeks old. We were in southern Alabama where my husband was stationed at Fort Rucker for the Army and our family was in Michigan. While I was there visiting I can remember getting up and down off the floor to change diapers and it was getting harder and I was moaning more and more. 

A few days after we got home I woke up in the middle of the night and my legs were bent as they usually were when I slept only when I went to stretch them out they were stuck.  Like REALLY stuck. I tried to unbend them but it was not working. I took my hands and reached down and pulled my leg straight which sent me into a scream from the pain. It was like lightening running up my back. From that point on every morning was spent getting my legs unstuck, and rubbing my hands and fingers until my clinched hands would open. Our bedroom was upstairs and I could not climb the steps until my body "woke up" so my husband would start our jacuzzi tub and help me into it so that I could soak to get my knees working. He would bring me the baby so that I could nurse while in the hot water. After that it was down the stairs for the day. We bought plastic cups and plates for me to be able to pick up as the glass was too heavy. I would have to have someone lift the pans off the stove, cut the meat up for cooking, use special slicers for cutting up veggis, and of course have the kids open everything for me. Between my husband,Greg, and my son, Matthew who was about 8 at the time, they helped me survive during that time. When Greg had to go to work Matthew changed all the diapers and helped me change Andrews clothes when he had poop explosions because I could not grasp the snaps or the tabs. Matthew grew up fast that year but he will always be special in my eyes for what he did for me. I cant even talk about it even to this day without crying. It has created a very tender heart in him and for that aspect I am very thankful.

The first few weeks were spent with tests and waiting. We were still military at this point so we were seeing the doctors at the Army Clinic. I can still remember the phase of the Leutinent that was my doctor when I came in with my newborn strapped to me because I could not hold him. I cried and she was very tender and was convinced it had to be RA. When my blood work came back it was very positive so off to the Rheumatologist I went. My first doctor was a nightmare. I was so, so glad to be able to request a new doctor and he was wonderful. We tried everything out there. Started with the "baby" RA drugs like Plaquenil and Mobic. When those didnt work tried things like Enbrel and several other biologic injections. Even tried the low-dose chemo drug methotrexate which made me so sick. After many attempts and failures my mom convinced me to try a gluten free diet. I was very much a skeptic and really didnt want to give up my beloved bread products.

Two weeks into the gluten free diet and I was shockingly better. I of course cheated a few times just to be sure it was not "luck" but it wasent. After being on the diet for a year I was able to go off everything except for the occasional pain killer for a tough day. After 18 months I decided to introduce bread back into my diet. At first it went good but I couldnt go crazy. It took about 3 months for the RA to come back to the point that I had to go back on the diet. This was about 3 months ago. The only problem  was that it wasent going away this time and in fact it was getting worse but in different ways.

This time has been very frustrating. I have some joint pain but the main problem is a weakness like I have never experienced before. If you can imagine the feeling you have after having the most awful flu that has had you up all night tossing your cookies thats how I feel every day. I am so weak some days that I can barely stand. My mind seems like its in a fog. I lose the ability to write. Even with the RA I was able to write for a few minutes before cramping up but now I can barely grasp a pen to try. I have tingling and numbness in my legs the moment I sit down and even sometimes when Im up walking. My hands turn white and go numb with prickly feelings. I was typing for my job one day when all the sudden my hand turned ghost white and just dropped lifeless to the keyboard. I had no hand for about 2 minutes. It was a pretty scary feeling! I go days where I cannot pick up the weight of a glass or a reference book I need for work. This is the girl that just 5 years ago was hauling and hanging drywall, climbing up and down ladders while I helped my husband fix up an old house we bought.

I finally decided it was time to see what was going on. I had a regular appointment with my rheumatologist and discussed with him this extreme fatigue and weakness. He felt all my joints and said that everything RA wise seemed good and he was concerned maybe this was something more. I agreed and decided that if this was RA it was time to move on to the bigger newer drugs we had not tried yet which was Orencia given as an IV infusion. I have been putting this off for a year trying to avoid it but I was losing my life. He sent me for a load of blood work and 8 viles later they were off to be tested for about 12 different things.

It took about 2 weeks to get all the blood work back and to my dismay all my RA blood work came back good. Normally this would be exciting but that just meant something else was going on. They did discover that my iron load was very high for 1. Being female still having regular cycles 2. Have ALWAYS been anemic. They also found that my vitamin B12 was a little low so we are supplementing for that. I then had an appt with my PCP for a yearly physical and Pap and while she was reading over my chart from the rheumatologist she said that he was looking at me for possible MS, multiple sclerosis.  I said WHAT??? I talked to my PCP about my symptoms and she of course was doom and gloom and convinced me that this is what is going on. She also told me I should not have any more children. I already knew it would not make good health sence for me to with everything I have been on but hearing that is disheartening. So now what?

So here comes the journey. Its a journey of self discovery and growth. One of patience and faith. Im looking at a diagnosis of early stages of hemochromatosis which is iron overload and also possible MS on top of my already diagnosed RA.  Let us not forget that I have to juggle all this along with homeschooling 3 children, working part time from home as a medical transcriptionist, caring and breeding our goat farm, and of course all the normal wife and mom duties. My parents have been so supportive to me through all of this. I know they would drop everything if I needed them here in TN.  My husband has been my rock. He has never, ever once complained about the extra work or my inability to help him like I used to. He tries to get me to do less than I do to keep me from myself. My kids have been very understanding when I have to sit out of an activity or we have to slow down on walk. I truly do believe that God has a purpose in this. I tried once praying for patience and learned quickly not to do that! Haha. I dont know what I am supposed to learn through all this, maybe someone is suppose to learn something from my own personal journey that I wont even know about.

This next month will prove to me one of many questions, probably scary uncomfortable tests that I really dont want to go through but in the end I hope we can get some answers so that I can start figuring out how to handle all this and if I will ever be back to the old me. I know whatever happens I will be stronger than I have ever been before. With God on my side I know it will all be okay. He never promised a smooth road but he did promise a road.

So, sit back, check back often and I will be updating again soon. I do plan to post about some of my reseach on not just the amazing results I have had with the gluten free diet but also some interesting things I have learned about hemochromatosis and MS, even if I dont end up having to deal with any of that in the end.  Maybe something that I have learned will help someone who is!