First, I’d like to say that I’m very glad you are here. If it is because you are just curious, then I say it is always great to learn about things you don’t know. If you are here because you yourself are chronically ill, then I am hopeful that you can at the very least find awareness that you are not alone. I’m not doing this for attention, but I want to be able to make a positive impact on people like myself and others who don’t understand what it means to be chronically ill.
So here is my (Linda’s) basic timeline.
Prior to 2009
Ever since I was a young kid I had very terrible stomach problems. This has continued throughout my life and has become something I am used to and that was recently explained by the diagnosis of Postural Orthostatic Tachycardia Syndrome.
I was at prom my junior year of high school. I was seventeen years young, and towards the end of the dance a song came on, and my right foot was stepped on. Immediately I was in searing pain.
The following day I went to the local urgent care and they diagnosed me with simple tendonitis.
A few days later, I was trying to walk on it and suddenly I was in excruciating pain. It was the worst pain I had felt up to that point in my life. I immediately went back to the urgent care.
Then they decided that I had a chipped bone move in my foot.
Ten days later I was not better, but was worse, and my foot was incredibly swollen, a purple shade, and in horrible pain still.
June of 2009
At this point I went to see an orthopedist, and he sent me to a physical therapist. The second the PT looked at it, he knew something serious was wrong.
I ended up getting a bone scan and was diagnosed with Reflex Sympathetic Dystrophy.
The disease moved all the way up my right leg.
My RSD moved to my right arm. At this time I was experiencing very serious symptoms, was unable to attend class, was barely able to walk, couldn’t use my arm, and was going through many hours of physical therapy a week, basically every other day.
I had a spinal cord stimulator put into my back.
I became very ill. I was unable to eat, and had become very jaundiced. I found out that I had contracted Hepatitis C (most likely from my surgery) and was having an acute reaction (which was a blessing in disguise). My liver was in severe failure.
January through July of 2010
The Hep C was completely gone, life was beginning to get a little easier. I was still in severe pain, but the SCS at this point did help. I was able to gain great strides in my health and became fully functional when I was not flaring.
My condition became much more severe again. The RSD moved over to my left arm and left leg. I ended up on many medications.
My neurologist started me on vitamin supplements. These led to a great improvement, though the severe pain was always there.
One day all of a sudden I was having severe chest pain, was having trouble breathing, and was very dizzy when I stood up. I was hospitalized and was eventually diagnosed with Postural Orthostatic Tachycardia.
Throughout this time I have had over 20 procedures, have been on what feels like 100 different medications (and the sad thing is that is probably accurate), have had to take a medical withdrawal from college, and deal every day with constant excruciating nerve pain all over my body, as well as having to deal with the new diagnosis of POTS which has led me to feel very sick.
I am not looking for pity, this is just a reference for anyone who is confused.
Here is Katie’s Timeline:
The first real signs that I had something was wrong was when I was three. My father who was a cop was in an accident on duty and tore his ACL. When he climbed up the stairs he had to climb them one at a time. Well everyone thought that I was just copying him when I climbed up stairs seeing as I took them one at a time too. But that wasn’t the last of my symptoms I got fevers regularly and every since I was born I got some kind of infection every couple of months. My knees and ankles were sometimes red and by the time I was walking (which it took me awhile to do) I was usually limping; again most people just thought that I was copying my dad. Finally my babysitter convinced my parents to take me to the doctor. After test after test they finally figured out what was wrong with me. I was diagnosed with polyarticular juvenile rheumatoid arthritis. Polyarticular JRA involves many joints, five or more which could be large like knees or small like your toes.
Outside of falling and limping, being in pain, taking blood, getting tests done, and doctor visits my first real memory having to do with arthritis was me standing in the middle of my babysitters kitchen during the middle of the day, with my pants around my ankles watching as my babysitter stuck a needle in my leg. I had to have Methotrexate shots in my leg ones a week at the same time. On top of my shots I had pain pills that were taking everyday and Folic Acid pills to make sure that I didn’t get ulcers. Having an auto immune disease I would get sick often so on top of my pills I had to have vitamins everyday. I remember wishing that I could do things like normal children. I couldn’t run like other kids, during school I couldn’t sit on the ground like a normal kid, all things that I could see my friends do but I couldn’t. I remember crying to my parents when it rained because some times that’s just how much I hurt. Change in pressure can cause pain for people with arthritis, so if the weather was nice and then turned bad well tough luck you were going to be in pain.
By the time that I was 11 my medicine wasn’t working, I was in pain constantly, I can honestly say that I didn’t know what a day with pain was like. I heard friends complain about being sore after playing soccer or swimming, but that was how I was like everyday. My parents and I were at wits end trying to figure something out. My doctor (whom my parents and I both hated) put me on a new medicine that need to be injected twice a week. The problem with this medicine you had to mix it yourself and it had to be kept refrigerated. The medicine was a pain to mix and no matter how many times my parents showed me how to mix it I couldn’t. I was stuck on what to do and the medicine would burn whenever I injected myself. I soon became afraid of needles and on top of the Methotrexate this medicine was something that had to be injected. My doctor had to give me a numbing medicine so that I could inject myself. It was so hard though, still to this day I can remember injecting myself in the stomach and cringing as the medicine would burn in my stomach. I usually couldn’t have friends over because of the pain I was in after my shots. In all of my years giving shots I can name the people that have seen me give myself shots on two hands. I don’t even think that my stepsisters have ever seen me do it. Well back on topic, at 11 I was tried of being in pain with no help from my medicine, doing something rash my parents and I came to the decision to end my medication. At age 11 I realized how little my medication was doing and I was pouring poison into my body for no good reason.
My first year without medication wasn’t really as difficult as it we thought it was going to be. I seemed though to get sicker and sicker more often then I did before. I tended to get bronchitis and strep throat at least 4 to 5 times a year. But I refused to let this get me down, my parents and I had done some research and we found out that there was an arthritis camp called Wekandu just a few hours away from my home. It was great to see that I could do things that other kids could do… the only bad part was I was starting to have cough attacks. At camp I had one almost everyday if not twice a day. It was something that my parents and I didn’t understand. It wasn’t until later that we found out that I had asthma. From 13 on I have to carry a inhaler everywhere I go just in case. Now it was even harder to exercise, when I could do activities that didn’t hurt my knees I tended to have chest pain and need my inhaler. It was hard but some how we got through it.
The next 2 year I went back to camp I still tended to have coughing attacks there which was most likely caused my different allergens there than back home, but I made it through. We finally changed rheumatoid doctors and finally we had some idea as to why my knees were starting to hurt more and more again. My doctor realized that I was over extending my legs and one of my leg muscles was stronger then the other and it was pulling my knee cap instead of holding it tight. I was told to go get physical therapy but I had a horrible PT that didn’t help me at all. I still have this problem today and am trying to find a better PT.
It had been an easy 3 years arthritis wise. Outside of having infections almost every 2-3 months, not much happened other wise. The only other thing that was changing was my eyes. Ever since I was little I had perfect vision and my parents were severely surpassed when I asked to get my eyes checked out because I couldn’t see the board all that well. I need glasses which didn’t surprise me, but what did was that less than a year later my eyes have already change .25. The only other problem that I have was an over active thyroid but with keeping it in check I was fine. After 15 years of having arthritis I have figured out exercise and things that I could do that wouldn’t hurt my knees. I’m still off medication but am need of new ones because Advil isn’t working as much as it did before.