Deep breath and here I go..
this is really hard for me because I simply didn’t want anyone to know how bad things are for me, but I am tired of hiding……
With the help of God, I will write my story which is so complicated and overwhelming.
I am 41, Mother of the sweetest little girl ever who can make me laugh when no one else can, married to my best friend who has always done everything he can to help me with this awful disease, daughter of the best parents a child could ask for, who would literally lay down their lives for me, this I know…. …….
Ok, begin –As a child I remember crying because my legs would hurt so bad. The only comfort would come when my Mom or Dad would rub them or use Soltice salve on them. The drs told them it was just growing pains. Those pains never went away. When I was 18 I got hit with a pain in my hip that was so bad I couldn’t stand up. I remember I had to buy a recliner so I could stand up easier.
It’s all fuzzy now but at the same time I was diagnosed with Psoriatic Arthritis, hypothyroidism, and alopecia. (diffused alopecia that others couldn’t see but would fill up the sink). I went on to get my degree in education and worked ever since I was 18. I was a secretary for a long time then became a special needs teacher. Which was my heart. I had a lot of pain in my hips and back and my neck kept getting stiffer but I lived a normal life.
After I met my wonderful husband when I was 31, we both had teaching jobs, a new house, so in love, life was good-so, we decided to try for a baby. I thought I had decided I didn’t want any children because of fear, yeah, I have always feared everything. But I prayed about it and told God if it was His will then I knew I would have a child. Literally, the first try we were pregnant! My pregnancy went well. I was just really tired all the time. But during my emergency c section everything went wrong. I didn’t numb completely and I could feel everything. After that, my body freaked out. When I came home, my Mom had to move in with me and help me with my baby because my pain was so bad I could barely move. I began seeing drs again and finally they decided I had A.S. My spine and neck were fusing.
That was almost 9 years ago. Since then, it has been one battle after another. I have seen to so many drs that I have a 4 inch binder full of paperwork. For my pain I have tried everything from chiropractors to hypnosis. I have seen at least 4 alternative drs, tried gluten free diets, Paleo diets, seen kinistesiologists, and so many more that I can’t even mention. I have taken so many different NSAIDS to no avail. I went back to work for a few years but then my job was taken from me and because of that my AS got even worse. The emotional toll was too much. That was in 2009. Since then my life has been a struggle.
About a year ago I started having problems with my left knee and had to have fluid removed. My dr told me at my last visit that it was only getting worse and that I needed to go on Remicade or I could lose my ability to walk, function, etc because the inflammation was so bad. I left in tears. I can’t even begin to explain how OCD I am about all this and how I fear everything. I tried Enbrel 2x and Humira once and I was so “out of it” that I had to stop both after a short time. With the Remicade I have been told of horror stories of cancer (which runs deep in my family) and liver failure, etc. I have also been told of the wonderful stories of getting ones life back. Of being able to play with your children, to go on vacations, to live again. But I don’t know what to do in my case. I am super sensitive to everything and everywhere I go things go wrong and I hear the familiar, “this usually never happens.” So for a week now, I have worried myself sick over what to do.
I have no quality of life right now. But the catcher is most of the side effects with RemciadeI am already experiencing (my hair is coming out in handfuls presently..I have had 6 biopsies and been to the best specialists at Cleveland Clinic who say that I don’t have alopecia areata but there is always a constant reason, it was thyroid and now it is a yeast infection on my scalp!) I have terrible burning and head pain that feels like my head has been beaten and it hurts all way into my eyes and back. Sorry that I went off on this topic but honestly it causes me as much heartache and pain as the AS because it is so painful and frustrating. I can’t even combe my hair anymore, my Mom has to help me, it’s that bad. With each day I lose more and more. I have lost my self esteem and don’t even want to look in the mirror. I also have terrible fatigue to the point that I have to make myself do things. I get itching a lot for now reason, so this is a lot of the side effects I am told people get with Remicade!! But part of me thinks the inflammation might be causing the awful head pain and hairloss…IDK..but I really do feel alone on this part because I have never talked to one single person who has hairloss with AS unless it’s from the meds. Anyway, I am exhausted physically and mentally, my fusion is getting worse, I can barely move my head or bend, can barely walk because of the knee, and losing all my hair.
My emotional state is so crazy right now because I don’t know what to do. If I take the Remicade and do get something else to deal with it, I simply couldn’t and I couldn’t take it back….SO the stress of the this is too much…I hope you are still with me because it’s taking every bit of energy I have to type this. I can barely see the monitor at this point. My eyes are on fire all the time. I also have my fingernails coming loose from the beds. Just trying to mention everything and hopefully someone can relate. Honestly, at this point if it weren’t for God and my family I don’t know what I would do. I constantly read in the book of Job what he went through and how he remained faithful and was given everything back and then some, but I tell you this AS thing can really shake you to your core..I am missing out on my child’s activities when I thought I could offer her such a great life. I very rarely leave the house. I am ashamed of my hair, my hobble, my stiff neck, my inability to concentrate; I don’t feel like me anymore. I am scared of what people think and that makes me mad too! I don’t want to be like that. I want to be strong, to have more courage, to say, “yeah I am not the same shell but I have the same soul, only stonger.” I was always very outgoing, funny, organized, loved life, dressed up, etc. Now I can barely get out of bed and sometimes have to have help.
I keep hearing people refer to AS AS an invisible disease, but it sure isn’t for me.The heartache is too much at times. I keep praying for a break but thus far, I am only getting worse. For a long time I isolated myself and then I started sharing my story only to be ridiculed and judged. I was told things like , “it could be worse, this will pass, I wish I could just stay home like you. “I was even told that I just wanted attention. SO I started keeping to myself again. But when I started reading all your stories I started bawling because I was like, “those people are like me, they would understand what I am going through.” So here I am ….reaching out in hopes that maybe I kind find others who I can talk to who not only don’t judge me but completely get me….Love and blessings….
Kentucky United States of America