Rachel Hawley

First post: Apr 11, 2016 Latest post: Feb 21, 2017
Hello,   For those that don't know how my illness all started..I have been sick for 5 years.  I kept going to the same Dr and he would do one test and tell me its nothing.I had stomach problems, throwing up, heart pounding, and overall just didn't feel the best.In Sept of last year, I knew something was very wrong.  I was having trouble breathing and couldn't work.  I would try working and get send home because I was so ill.I ended up in the ER and they found some enlarged lymph nodes.  They said, rest and repeat in 3-4 weeks.  Still very sick, They said I have mono, go home and rest for 3 weeks.  I did as they requested.  Half my body went numb.  I kept going back to the Dr and they said, they don't know why, go home and rest.  3 weeks later the repeat scans showed no decreases lymph nodes.  At this point I requested a new Dr.I only saw her once and after that one meeting, she barged into the exam room and said "Rachel you are very sick"!   I said, I know.   I've been trying to say this for almost 3 years. She ordered test after test, and send me to St Cloud for a biopsy.  I couldn't get in for 12 weeks.  Finally after my biopsy the Dr himself called me and told me what they found sarcoidosis and that I need to see a rheumatology Dr ASAP.  The first appointment was a month later.  In the meantime I kept passing out at work and a Litchfield Dr put me on 60 mg of prednisone.  Nothing else. Dec 30, I was on my way to my sisters house in Mabel, I stopped at my Mom's overnight to break up the drive.  I woke up that morning the 31st and had a stroke.Long story short, I ended up at St Mary's at Mayo in Rochester.  They did MANY more tests.  During an angiogram I had another stroke on their table.  I was well taken care of, but it worried the Mayo Dr's even more.  What they found is that I had nerousarcoidosis, a PFO, (hole in my heart), and Factor V Leiden (clotting issue) After 9 days in the hospital I finally was released.  I have been to the ER at least 8 times.  I'm very sensitive to medications.  Because I was already on prednisone, Mayo decided to leave me on the meds.  I didn't do so well, so they decided to taper me off prednisone and start methotrexate (chemo).  I was just back for my 3 month checkup and I complained how badly I hurt, so more tests were ordered.  Now I have osteroncrosis in my hip bones.  SO now they took me off most of the meds and I'm waiting to see a orthopedic Dr on the 23rd.  That is where I am!! Everyone I see asks me how I'm doing...   They all just want to hear that I'm getting better.   I usually just nod, because it is way easier then to explain.  I'm exhausted explaining all this.  It's hard for me to understand.On a good note, the prednisone did take the sarcoidosis out of my brain and did shrink lymph nodes. But now my bones are dying.  I need a break!

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