Hi luiggie & everyone,
I have read all your stories....WOW ! All of you have been through so much. You all are such an inspiration to me!!!
I am 35,married to a wonderful guy..Tim...He couldn't be more supportive to me. I have 2 great boys..Tyler is 14 & Dylan is 9. I was dx with this horrible disease last year,but I know I have had this since I was very young.
I can remember getting terrible pains in my legs when I was really young...I would just cry & cry. My mom said it was just growing pains. I can remember using allot of Ben Gay. As I got older I had more pain,being in the sun bothered me and I would get coughing fits sometimes so bad I would gag & throw up. I never thought I really had anything wrong. Finally my mom took me to a dr. He said I would probably have arthritis when I got older...No big deal. Basically I took aspirin for the pain & went on antibiotics when I got infections.
I went to school to be a hairdresser...bad decision with all the trouble I had with my legs& feet. I felt pretty good for quite a few years. Then Dec. 88 I had my 1st son Tyler. I was 21. I had toxemia & ended up with an emergency C-section. I massively hemorrhaged after my surgery...at 1 point I had no pulse and the dr's told my mom they didn't know if I would make it or not. I had to have multiple blood transfusions to save my life. Thank God Tyler was healthy! Took me 3 months to recover. I divorced my dead beat husband. June of 91 I married my wonderful husband Tim.( I couldn't imagine my life without him! ) He adopted my son Tyler at age 3. We had our 2nd son Zachary in Mar. 93, unfortunately he died ( still born) They said I had a deformatity in my uterus. Was it from the sarc? Who knows. We were devastated! Joined a support group and made it through it. May of 94 we had our 3rd son Dylan. Thank God he was healthy! Thought my life was going pretty good. Then 6 months later..BAM...dr's tell Tim & I our son has a brain tumor. Tyler had just turned 6. They said he had a very aggressive fast growing tumor and it was CANCER. We were devastated again! Before we knew it he had surgery then started chemo & radiation. A month later when we got to take him home it was like having a 6yr old infant. He couldn't walk or talk...he had to learn everything all over again not to mention he was very sick. The dr's couldn't tell us if he would make it or not. That year he was in the hospital more than he was out. I had to pull myself together and be strong for him. Tyler was such a trooper through it all! By 96 he was on the road to recovery. He started getting better & stronger and I started getting sicker & sicker. I was so tired all the time & just didn't feel right. I went to my Dr. she said it was probably just depression. Look at all you have been through...who wouldn't be depressed? She put me on an anti-depressant. I hadn't worked since Tyler was dx. He was still going back & forth to dr's allot. I kept feeling worse & worse. I was getting frequent infections,more & more tired and hurt all over. My Dr. finally ran all kinds of tests....tested me for everything form thyroid to
HIV....NOTHING....you're just depressed!!! Try a different anti-depressant & go see a therapist....felt like it was all in my head. Kept getting worse! Tyler was getting better. He has side effects from the chemo & radiation...he is a LD child and mentally will never be right,but thank God he is alive and is such a positive happy go lucky kid. I wish I was more like him!
Jan. 00 I started with flu like symptoms...fever,body aches, chest pain ,numbness & just didn't feel right. My hands & fingers really swelled up so I went to the ER because it scared me & I couldn't use my hands. They ran all kinds of tests ,but really find anything. They cut my ring off my finger. A few days later my feet & ankles swelled so bad I couldn't even walk. Went to another ER..was afraid maybe it was my kidneys....was told there was nothing wrong....it was probably menstrual problems....ER dr. was an idiot!!!! I kept getting worse...by now I couldn't walk at all ( you couldn't tell I had ankles) my husband had to do everything for me. I couldn't even hold a fork to feed myself. It was so humiliating!!! My dr. finally sent me to see a neurologist. He ran some tests ,but said I really needed to see a rheumatologist. Mar. 00 I finally got into see a rheumy Dr. She put me on high dose prednisone and within 24-48 hrs the swelling was down & I could walk again. She ran allot of tests & blood work. She said it looked like I had rheumatoid arthritis. All my blood work came back neg. for RA, but she said the way I responded to prednisone meant that I had RA. I accepted her dx & started treatment. I stayed on prednisone and she also put me on plaquenil. I started getting better. I was put on several different RA drugs and then I went on MTX and I was weaned off the prednisone about 1 1/2 yrs later. After about 6 months off the prednisone I started having lung problems. I kept getting worse so they sent me to a lung spec. He stopped my MTX because he thought it might be causing my lung problems...put me back on prednisone...got better..went off...problems came right back. Really short of breath,coughing all the time and my lung function was dropping. By Oct. 02 I was really bad. Dr. upped my prednisone to 80mg and said it was time to have surgery. Nov. 02 I had an open lung biopsy...showed my lungs were full of grandulomas....probably sarcoid....was told that was a good thing to have....yeah right!!! I spent 6 days in the hospital...my bladder quit working...Dr's don't know why. I went home on a catheter. It was 3 weeks before it started working. I seemed to be doing ok so my lung Dr. started weaning me off prednisone. Mar. 03 started getting SOB again & coughing again & other problems. The Dr's finally agreed I never had RA and it has been the sarcoid all along. By June 03 I was really going down hill and my lung function was down to 50% and declining. I couldn't even make it through my last PFT....I had to go back up on the prednisone. My lung Dr. said my case was to complicated and he didn't know what to do for me. He sent me to see a top Sarc. Spec. in Cincinnati. He will know what to do for you.
July 03 I went to see Dr. Baughman....I was very impressed by him and really liked him. He told me my sarcoid is very serious. I have stage 3 pulmonary sarcoidosis plus other problems and it is still progressing. Dr. Baughman said I have what is called refractory sarcoidosis....never heard of that before....said my prognosis wasn't very good. If I don't go on a stronger treatment I will progress to fibrosis and you don't want that. He feels the best treatment for me is Remicade. It's very expensive and I am worried about the possible side effects,but I have to do something. I'm just waiting to see's if my Ins. approves Remicade and then I will start.
You know they say " God will only give you what you can handle " I guess he thinks I am really strong! I don't know about that.
I'm so sorry this was so long.....I just kept typing....thanks for listening.
I am so glad I found this special group. You all have been so helpful & supportive!
God Bless each & everyone of you !!!
Jami
