Good Day, I am unsure why I post this...I am sort of hoping to find tons of friends that walk my shoes I guess.
I am a 28 year old mother of two. My children are 5 and 3 years old. I am married. Happily married. House, dog...all perfect though my life was not always like this. I am basically sick since the age of 4. I always had pains. Pain in my arms and head that I could not explain at such a young age. Surely my parents dragged me from one doctor to the other yet non could find anything. I remember having cables attached to me, being poked with needles. Countless diagnosis's that where all wrong. Countless meds. After a while the doctors said that I am just out for attention. I did not care what it was just wanted the pain to stop NOW. So my parents started to give me normal OTC pain pills. By the age of 8 I took them myself (without my parents knowledge). My the age of 12 I was at 20 ibuprofen in the morning just to start the day out of fear the pain would come. I made a trip to the German Pharmacy daily (different once mind you...I am from Germany so all works a tad different). The older I got the more pain joined my life. I started going to more doctors. One mentioning rheumatoid arthritis. I showed him my 16 year old middle finger and walked of. After all...I am 16 and not 80 years old (my thought process was "you must be old to have this disease). I then had to detox after trying to take my life. My pharmacy and doctor would not give me my good stuff (vicodin) and I was in SUCH agony. I was in the clinic for 6 weeks to detox. It was horrible. Anyways...I started to be a bit better and also found a magic plant to help with my headaches and "arm" pain. O_O I did this basically until I met this soldier (my husband) who told me that if I want to be with him I would have to stop the pot due to him getting in trouble. I started some painkillers again but took them as I was suppose to...oh and I cut myself to release some "pain". I also went to a shrink (I think I helped her more then she helped me). So you see, I tried.
Then I got pregnant and EVERYTHING changed. I had a hard pregnancy but did not take ANY painkillers due to me being afraid of messing up my baby. We got married, my son was born and he was perfect. I still had problems which I fixed with pain pills. With that pregnancy I gained 60lbs which left me at 200lbs. Being big as that made everything worse. I lost some of it and with my second pregnancy I gained 17lbs. I did it right.
After being done with making babies I was also done with being in pain. I went on a health spree. Started working out (which became my new drug) and ate better. Though I did not have an idea about nutrition. I did what most people do. High protein, no carbs and moderate fat. In 7 weeks I lost 32lbs.
But then I got sick...very sick. One of my lymph nodes in my neck got infected...all of my other lymph nodes started to swell. It was painful. After they fixed my infected lymph node I noticed that I was hardly able to open doors by my self...little tasks like pouring coffee looked silly when I did it. I used two hands, I wrote different. I never really noticed I did these things due to discomfort. Once I had to call my son because I was not able to open the garage door from the outside. He, of course, opened it with ease with his little 5 year old hands. Peeling an apple took me 20 minutes (my kids would then steal it and eat it within seconds). Then my feet started to hurt. They would be hot but cold to the touch. Walking would feel like walking on needles. My groin lymph nodes had the size like little eggs. I got pregnant twice and lost it twice. And then one morning it took my husband two hours to get me to wake. He had to rub me everywhere. Massage my feet and hands and arms while I cried badly. He still had to help me to the loo. That was kind of it. I went to my house doctor who pointed out a funny looking rash in my face. It looked like a butterfly. With all the pain going on I did not even notice that. Nor did I notice the bruise looking rash on my upper thighs. Well...one led to another. I told him how I was always excused at gym. "I don't sweat and pass out a lot". One ANA test and several other tests later, after 25 years, I was finally diagnosed. Lupus and Sjogrens Syndrome. Say what?! The doctor is sure that I have this since I am little but me eating what we humans are not build to digest in massive amounts made my immune system go NUTS...getting the infection did not help. First real flare-up happened. I was put on all sorts of medications. Prednisone during a flare...plaguenil which I had to stop because I lost sight in my right eye, trazadone to be able to sleep (stopped that as well because it made me feel worse in the morning), flexeril (stopped that too) and tramadol for pain (loving it). Tramadol scares me though. Yes I am in a lot of pain most days...sleeping? Get out of town. I am surprised I knew how to spell it just now. But tramadol helps make the pain go away...let's me enjoy sleep. BUT if I forget to take it I get withdrawal symptoms that almost top my normal flare-up symptoms. So what to do? Deal with it? Have Lupus and such and just give up? Meaning being hooked to pain pills? There HAS to be another way. I tried the Gerson Therapy. I am sure it would work...but it is impossible to eat/drink this way for the rest of my life. I read of people with my illness and they take way more pain pills then me (I am taking 2-4 50mg's in a 24 hour time period). What do you all take or do? I have to function...my husband has a great job so when I am not able to wipe my own bum he works from home and cares for the kids. BUT, that is why I am a mom...I like being a mom, I like my kids and would like to be more for them then this half dying 117lbs being in bed. So what do I do? Surely, as you all know, we get liver/kidney tests every 2 months and so far I am good. I don't even look sick (haha!). So why do I feel guilty? I guess because I was addicted before. What do I do??!! I tried acupuncture and other "tree hugger" stuff. I am 95% vegan...sometimes meat is a must. It makes me feel strong. I don't smoke, I hardly ever drink. I do everything right! I even keep a food journal to make sure I only eat anti inflammatory foods. O_O What should I do? What do you do???
I hope this was not to long or hard to read. My apologies on the gramma. It is my second language and it is only 8.35am in the morning.
I was diagnosed 4 months ago...
Best Bri
Saving 