Sunday, November 15, 2009

Obstacles: Living with an autoimmune disease and trying to maintain fitness

I recently found out the meaning behind this song and I felt a strong urge to share my story hoping to help others who live like this or live with someone like this. Rob Thomas wrote this song about his wife who suffers from an autoimmune disease.  Most people who suffer from an autoimmune disease usually suffer in silence.  It is hard for people to understand these diseases because you usually don't look sick and the only way you may find out that they are suffering is if they tell you.  But then because you don't look sick you are written off as a complainer, especially if you are sick for a long time.  I was diagnosed with Lupus about 12 years ago.  When I have a flare up I will have really bad joint pain, extreme fatigue and depending on the flare up I may suffer from pleurisy, kidney infections, muscle pain and more... When I'm not having a flare up I still suffer from fatigue, mild joint pain and muscle pain. 

The past 3 years I have been sick with multiple autoimmune diseases.  When one gets better another one manifests.  Lupus, polymyositis and crohn's disease are the ones diagnosed but the doctors feel there are others that they can't identify.  After I had a mild Lupus flare up a few years ago, mainly dealing with joint pain, pleurisy and severe fatigue, I then began to suffer from severe muscle pain.  I would work out (because exercise is actually good for people with Lupus b/c it helps with the joint pain if you can get through the workout) and then have severe pain for almost a week.  Every muscle hurt and became weak to where I could barely hold up a blow dryer to dry my hair.  The pain would subside a little and I would try to work out again only to feel this extreme pain and weakness.  After about 3-4 episodes of this my doctor did some more blood tests only to find my cpk levels (muscle enzymes) were over 22,000 which normal values are below 300.  You would normally find this level in people who were in a car accident and had severe muscle damage.  This was polymyositis and I wasn't able to work out for over 6 months.  Of course I'm so stubborn I kept trying about once a week only to suffer more pain.  After the prednisone finally put this one at bay I started having severe digestive system problems in which they finally decided to remove most of my large intestines.  After this surgery (which was the worst surgery I've ever had including the horrible recovery) I was diagnosed with Crohn's disease.  I finally started getting better overall after another round of prednisone.  My doctor prematurely took me off my meds because he said everything looked ok even though I said I still didn't feel right.  By this time I'm seeing 5 different doctors because one doctor won't treat everything, if I suffer joint pain I see the rheumatologist, nerve pain/weakness-neurologist, abdominal pain-gastroenterologist, breathing problems-pulmonologist, chest pain/high heart rate-cardiologist...and so on. 

After going off my medications I was just getting back into my routine of running 5 miles and strength training then BAM:  all of sudden I can't breathe while running.  I had just started running hills since my girls were in cross country so I thought, wow these hills are brutal I could barely run a few miles.  Each day I ran less and less having to stop because I couldn't catch my breath.  Uuugggghhh!  Not again!  I just want to get better, c'mon!  After a few months of being treated for asthma that I'm sure I don't have I am still not any better.  I keep trying every week to run and I push myself until I feel like I'm going to pass out b/c I think ok this time I can do it.  The doctors finally decide to run some blood work only to find I'm really iron deficient...what?? I'm on prescription strength iron supplements, I eat iron rich foods and because of the birth control I'm on, I don't have a cycle at all.  The reasons one might be iron deficient is either malnutrition or bleeding.  After another test it is discovered I am indeed bleeding internally somewhere along my digestive tract.  So next week I undergo a few tests, one to see if I really have asthma or some other lung problem and the others are an upper and lower endoscopy to try to find the bleeding.  If they can't find anything with the upper and lower endoscopy then I get to swallow a camera pill.  Ok, so that's kind of cool.

In the meantime I keep training clients yet when I go to work out I feel like a really old lady barely able to push myself to run 1 1/2 miles alternating running/walking and only able to lift light weights less than 50% percent of what I'm used to.  I love training clients and when I am working with a client I actually feel pretty good, knowing I'm helping them achieve their goals and seeing them improve and get healthier is just such a good feeling.  My family has adjusted to my illnesses for the most part.  It is hard for family that lives far away why I haven't been able to go see them.  My husband has struggled off and on because I don't look sick and I might feel good a few hours per day then  I start to feel bad again.  I have to really plan my day in advance because I have to conserve my energy.  My husband will come home and want to go out to eat or see a movie but I can't because I used my energy already.  He struggled with having to schedule a date especially since he is a spur of the moment person.  He tries and he goes to my doctor's appointments to try to understand this better.  I'm in a lot of pain and it is hard for him because he can't do anything to help me.  Being married to someone who has been sick for 3 years can be pretty difficult.  Especially when prednisone can make you very irritable and so can being iron deficient and pain.  He is really learning to ignore my "exorcist moments", which can be pretty bad.  I'm thankful he can get past that.   

My kids are awesome.  I put an oversized chair in my room so they come in my room to watch TV with me on the weekends.  I'm usually in bed for most of the weekends to rest up for the week.  Having 3 teenagers climb in bed with you or sit in the chair next to me and watch movies is really awesome.  When my husband is home at night there are 3-4 of us in my bed and 1-2 in the chair watching movies.  My bedroom has become the family room and I really feel blessed for that.  So I'm hoping next week will bring some answers and then treatment to make me normal again.  I can't wait! :) If you know someone who lives like this don't treat them like an alien b/c you don't know what to do, just find ways to encourage them, make them laugh or do something fun with them that they can handle.  They want to feel normal but also understood. 

God Bless!

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