I'm a 35 yr old stay-at-home mom of two who was diagnosed with mi...

I'm a 35 yr old stay-at-home mom of two who was diagnosed with mixed connective tissue disorder over three yrs ago. But since I was 18, I've had scleroderma & rheumatoid arthritis when I was 23. I never took any drugs for either one up until May 2008. Although the worst things I've gone thru over the yrs were weight loss, stiffness and limited flexibility. The most dramatic change was my facial features. I've had old friends from high school ask me if I had plastic surgery! Other than that, I was able to get pregnant twice and have two beautiful boys. When my rheumatologist diagnosed me with MCTD in 2006, two yrs after my first child, it was very upsetting to know that lupus and sjogren's syndrome was added to the mix, literally. She wanted me to take prednisone and plaquenil. I said no way. I told her I wanted to try for another child and didn't want any drugs to ruin my chances. She assured me that I could take both even while I breastfeed! So I left and ended up with my second boy in 2007. But admittedly, both pregnancies took a toll on my body, the first one with MCTD and then the second one, I had gestional diabetes. A few months after birth, I felt the arthritic flares and the fatigue and sluggishness coming on strong. Without doing any research about either drug, I did consider taking it after I stopped nursing my second child and thought okay, two children are it for me and now it's time to take care of me. I was given prednisone at 5mg daily May 2008 for that entire month. I was very scared but I did it. I just didn't do it consistently. I would skip a day or two..or three...or four days at times before I would take it again. The rheumatologist didn't give me any warnings about side effects, skipping the dosage or tapering off. After I ran out, I decided I couldn't go back on anymore. It did ease the stiffness in my joints and gave me more energy but the mood swings, faster heartbeat and more than normal anxiety did not help. In the next two months, I experienced serious cases of heartburn and acid reflux and a series of episodes when I would gag on a bite of food and had to jump a few times to get it down. I felt a rush of such fear every time it happened that I knew it was the absolute worse feeling I ever experienced in my life. Then the worst happened last August when I fell asleep one one night after having a chocolate chip cookie. I woke up and couldn't swallow. I started drinking water but it was coming back up and out of my mouth. I panicked and screamed for my husband to do the Heimlich on me but it wasn't working. We called 911 and I started downing another glass of water. By the time they got there, I felt the cookie go down. It was something I never wanted to go through ever again. I saw a holistic chiropractor who specialized in kinesiology and other little rituals. He discovered a problem with my adrenal glands and digestive system. Soon after, I saw a gastroenterologist, had an endoscopy and Barium swallow and the diagnosis was esophagitis. It significanty showed how thin it was getting and why I had trouble swallowing. As of last November I was scheduled to have a three hour endoscopy to have a tube go down my esophagus to widen it enough to be able to swallow again. I was too scared and so it didn't happen to this day. You see I like to go the natural route but it is an expensive one at that. It really is my gut instinct that tells me that drugs like prednisone are killing more people than helping people live. But I look back to the fact that I still didn't know anything about it, not like I do now, thanks to the internet and websites like this. Then here's an absolute doozy for you! I was fine for a few months, up until a few months ago in February. My knees were in pain and stiff as a board, my arms were not happy as well. I couldn't take it anymore so I actually went back to my very first rheumatologist in March, who I saw when I was 25 yrs old. He did x-rays and then pushed for the prednisone. I broke down and decided to take it again. This time at 10mg a day. Now I know this is nothing and so was the 5mg from last yr but being only 102 lbs at the time, my body was telling me that it couldn't handle it anymore. I took it consistently this time and for almost two months. The last two weeks though I started to skip again. I also decided that the RA was too old school for me so I went to see yet another RA at the end of April, the one who diagnosed me w/MCTD three yrs ago. I figured the first one never changed so maybe she got better this time around. She took me by surprise when I told her I was taking pred and that she wants me to stop!! She specifically said, "it's an immunosuppressant, that wouldn't work for you."! What a joke!! So she just said to finish it off and start on plaquenil, another drug I dreaded to take. Again, no explanations about side effects or tapering off, I had like three pills left and just stopped. As for the plaq, talk about short-lived. I took maybe three or four and that was it too! I was angry by all the RAs and how they operate. Just take this and don't worry about nothing else. I'll see you in a few months. Then you go home and forget about it. It is highly unlikely with what came next for lil ol me. The first week of May, a pain started in my right ankle. It was more like an annoying sore pain so I tolerated it. By the end of May, I was hobbling on a cane and watched my foot go from normal every morning to an inverted position, w/ the sole facing my left foot. It was swollen, painful and I couldn't put any weight on it. After thinking I was going through an arthritic flare, I said to myself that this was no ordinary flare I've had in the past. I thought of prednisone and how it started after I stopped taking it. The plaq was not in the picture since it takes months for it to take effect. THAT'S WHEN I FINALLY SAT MY ASS DOWN AND STARTED SURFING. After a good three sleepless nights of reading pages and pages of info about withdrawal symptoms, tapering off and stories much like the ones I've read here, I flipped out and went on a mental rampage. I put two and two together about the link between my esophagus and stopping the pred last yr. I have no doubt that the pred f'd it up! Now after seeing one orthopedist (who didn't deal w/the foot/ankle but didn't know), having an MRI which showed torn tendons and ligaments and then being sent to a podiatrist surgeon (BIGGEST MISTAKE TURNED INTO A BLESSING), who decided to take the conservative approach by having my foot casted in a straight position. It was a procedure that I had to be knocked out for since I couldn't bear the pain of anyone moving my foot. That was June going into July. Removal day was the 23rd and lo and behold, hello inverted foot again. Not only did the cast feel loose but I felt my foot turning in it! The blessing was that I didn't have surgery and I didn't have it w/ this damn doctor! He then felt I needed to see a neurologist to rule out whether I may have lesions elsewhere in my body that could be the cause of my foot inversion. I said sure I will see one but I'm not coming back to you! I went to see the doctor I was supposed to see in the first place, an ortho surgeon who specializes in the foot & ankle. But boy he threw me for a loop! Not only did he roll his eyes at the idea that prednisone was involved in this injury, but that MRI don't tell the truth and so I don't have anything torn!! Based on my autoimmune history, he wants me to see a rheumatologist to rule out arthritis as the culprit. He also thinks seeing a neurologist will be a waste of time. He also mentioned the possibility having RSD/CRPS. Google it, it's not GOOD! I honestly hope that's not the case since I'm not in any pain other than the stiffness and non weight bearing pain I'm already used to. This ortho is supposed to be one of the best in the nation and I don't know if I can trust him either! All I know is the prednisone should be BANNED. BLACK BOX THIS BITCH!!! If I had the power and money to go after the makers of this drug, I would run them down for every dollar. I have my 22 month old who was just diagnosed w/PDD recently and I get angry w/the memory of that RA trying to get me to take the pred and plaq before I got pregnant again! My almost five yr old is wondering why I have to walk around in crutches every day and that I can't go outside to play with them anymore. It's been almost three months of this ordeal and it's starting to really depress me, my husband is trying his best to take care of me and the boys as well as my mother and mother-in-law. I have a great support system but I still long for leisurely walks by myself and taking the boys out on my own. I can only go outside in a wheelchair after my husband carries me down three flights of stairs in a no elevator apt. bldg. Life has changed drastically! I'm trying to stay sane everyday for my boys' sake and for my husband's. I do want to mention one last and most IMPORTANT THING. A website: ****** I started taking it two months ago and it has helped me tremendously so far, regardless of my situation. I developed an enlarged thyroid nodule back in February which needed a sono guided biopsy to see if it was cancerous and it turned out to be benign with normal thyroid function as of last month. As for my foot, I don't know what I may have if it's not arthritis related but I hope that LDN is working on it as of right now. For all autoimmune disorders and some cancers, anyone here should take a look at the website and read more about it. Thank you for letting me share my story :-).