At the age of just nine months I had already experienced many infections. They were treated with antibiotics, but always came back. I had an allergy to milk and formula and after my mother frustratingly tried over 30 different formulas, she finally found one I could keep down.
My mother recalls my pediatrician feeling that nothing was necessarily wrong, but she was my advocate, and she knew something wasn’t right.
She took me to George Washington University Hospital in Washington, DC. There we met up with a hematologist by the name of Dr. Romansky. He did a lot of testing and finally diagnosed me with hypogammaglobulinenmia.
I started gamma globulin injections (it wasn’t in intravenous form in 1955). I seemed to go into remission during my childbearing years – I now have three healthy grown children — but at around age 30 I began having symptoms again. Extreme fatigue, recurrent sinus infections, viral flu-like infections started to slow down my busy life. I was in denial that it could be the hypogammaglobulinemia and just continued on.
Eventually my joints began hurting, my balance was off, I had L’hermitte’s sign — which is any electric like shock feeling when I moved my neck, the feeling going from my neck all the way down to my toes. I also couldn’t seem to hold onto things. My family doctor did some testing and my ANA was 1:1280 and my sed rate was 30 — both pointed to some kind of autoimmune disease.
Over the next six years I was finally diagnosed with Lupus and Multiple Sclerosis. I went to an infectious disease doctor – and again my IgG levels were in the 400’s. I also has chronic sinusitis for which I have had two major surgeries, and also was diagnosed with MRSA. So, at this point I am back on IVIG 30 gms every two weeks, taking Copaxone injections daily for the MS, and trying every antibiotic – both oral and IV to fight the MRSA, Klebsiella, Stenotrophomonas and Pseudomonas infections,
The choices my doctors had to choose from for my infections was dwindling because I had become resistant — or the infection was resistant — to the antibiotics that were available. This was from 2009 to 2014. Finally, my immunologist put me on IV Vancomycin for eight weeks. The infections cleared in my urinary tract and part of my upper respiratory tract except my sinuses. The infection I had in my mediport (Klebsiella) cleared when the mediport was removed and a new one inserted one month later. I was on Chloroquine for my Lupus for twelve years but had to discontinue because it started to affect my vision, and there are no other drugs available to take for Lupus.
There is so much more — I could go on and on, but the jist of my story is that I’m alive!
I probably shouldn’t be with all the infections and everything but God must have a purpose for me! My faith is my reason for getting through and continuing on, plus a wonderful husband who understands when I have a bad day – who has learned to access my mediport when I can’t – and is a blessing from God. I have eleven grandchildren, I’m not able to run and play with them like I used to, but we do other things.
I want to encourage others to have faith, take each day as it comes, and rest if you need to. You can have a wonderful life by adapting to your current conditions, and never giving up hope. (I say this having been through some very dark days – not even wanting to go on – but Zoloft is wonderful!) And when you feel so bad inside and someone says to you “you look like you are feeling so good” just smile and say thank you. I have often said “I’m glad I don’t look on the outside like I feel on the inside! Nobody would want to be around me!” I try only to complain about how I feel to myself – but my husband always knows and so does my little terrier dog who sticks by me like glue – such a comfort! So keep the faith and don’t give up!