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Here is the list of diagnoses I have received since 1998 (just as I was turning 20 years old). Many are complications of crohn's or the medications I am taking (such as diabetes, high blood pressure, and osteoporosis). The picture in the pink frame is me at 18.
Crohn's - Crohn's Info
ulcerative colitis - UC Info
pyroderma gangernosum - PG Info, this has to be the best article I have ever found
erythema nodosum - E. Nodosum anklosying spondylitis - AS Info, again great resource here
 diabetes (due to steriods) - Steriod Induced
high blood pressure - HBP
high blood pressure - HBP
 adrenal failure - Also called Addison'sosteoporosis -
osteoporosis - Osteo
acute renal (kidney) failure - KidneysÂ
restless leg syndrome - RLS
anemia of chronic illness - Anemia
carpel/tarsel tunnel syndrome - Carpel Tunnel
migraines - Migraine info
asthma - Asthma
chronic bronchitis - Bronchitis
I have constant back neck and shoulder pain (from a car wreck in 01). I have already had back surgery (with rods) and a complete shoulder reconstruction.Â
I have been dx'd with Gout yet, but I was told by my general practitioner to ask Mayo to check for this, as I have been having elevated uric acid levels and also finger/joint pain. This has probably already been done, so she didn't want to do extra lab work. If gout is dx'd, this would be 5 forms of arthritis.
I have nerve damage from either high fever as a child (had pnuemonia and measles before 13 months old). I carried temps over 105 several times. Often prolonged fevers cause hearing damage. My mother discovered the loss around the age of 2 to 2 1/2.
Haven't worn any since 9th grade. I had to have them during my school years, but as soon as I homeschooled and then went on to college, I quit. I could sit where I wanted in college and made use of reading lips. But now my family is noticing a worsing and also confusion of sounds. I hear things completely different from what people are saying and often answer back with completely off-topic answers from trying to piece together what I hear and and fill in the blanks.
And how could I forget I have profound hearing loss in both ears. 75% in my left and 50% in my right. If we can get the money or some financial assistance I am going to get hearing aids (the set that I need are behind the ear with a small tube that goes in the ear canal). They cost around $2000 each. I have a ear pressure problem that doesn't allow me to wear the in the canal style (which is a bit cheaper) and also the severity of the loss (and type of loss) is best treated with behind the ear style.Â
osteoporosis - Osteo
acute renal (kidney) failure - KidneysÂ
restless leg syndrome - RLS
anemia of chronic illness - Anemia
carpel/tarsel tunnel syndrome - Carpel Tunnel
migraines - Migraine info
asthma - Asthma
chronic bronchitis - Bronchitis
I have constant back neck and shoulder pain (from a car wreck in 01). I have already had back surgery (with rods) and a complete shoulder reconstruction.Â
I have been dx'd with Gout yet, but I was told by my general practitioner to ask Mayo to check for this, as I have been having elevated uric acid levels and also finger/joint pain. This has probably already been done, so she didn't want to do extra lab work. If gout is dx'd, this would be 5 forms of arthritis.
I have nerve damage from either high fever as a child (had pnuemonia and measles before 13 months old). I carried temps over 105 several times. Often prolonged fevers cause hearing damage. My mother discovered the loss around the age of 2 to 2 1/2.
Haven't worn any since 9th grade. I had to have them during my school years, but as soon as I homeschooled and then went on to college, I quit. I could sit where I wanted in college and made use of reading lips. But now my family is noticing a worsing and also confusion of sounds. I hear things completely different from what people are saying and often answer back with completely off-topic answers from trying to piece together what I hear and and fill in the blanks.
And how could I forget I have profound hearing loss in both ears. 75% in my left and 50% in my right. If we can get the money or some financial assistance I am going to get hearing aids (the set that I need are behind the ear with a small tube that goes in the ear canal). They cost around $2000 each. I have a ear pressure problem that doesn't allow me to wear the in the canal style (which is a bit cheaper) and also the severity of the loss (and type of loss) is best treated with behind the ear style.Â
This is me just a couple months ago. It was taken in mid Oct at the local melon patch.
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Comments: 21
Before I was dx'd with these things, I had never heard of crohn's, pyroderma, e.nodosum, spondylitis, etc. I have had to do my own research of these disorders and search for treatments in many cases. Most of the time, when I start a new med, it is because I have researched it and asked the dr if I could try it.
How is your daughter?? I pray she doesn't have to go through all of these issues - that there will be some sort of treatment available so she won't suffer. If you ever want to talk, my box is open, okay.
My parents didn't know what they were getting into when they adopted me. They didn't know I would have all these health issues. But they stuck by me - even though there has been a lot of fussing, anger, etc. I don't think I could have been with a better family. Maybe more money, maybe a family who didn't fight all the time, but still my family has given me more love in spite of all of that and support.
I adopted my son at birth, and if he winds up with health problems I know that we will stick by him and do everything in our power to see he gets the best care. Though I pray he never has to deal with any thing like this.
Stopping by from ATWS/November!
Thanks for sharing at MAY I MAKE A POINT? Have a good day!
atws
It is only by God's grace that I keep on going.
You certainly make me feel bad about complaining about my aches and pains.
And I am currently fighting kidney stones. Again, people on pred have a higher risk of them. And having crohn's and an ostomy surgery somehow increases that risk too.
But don't ever feel bad about what you are going through. Everyone has pain and has a right to complain and seek help. That is what family is for. To listen, to hug, and to pray.
Leaving comments for ATWS November.
Giving that a try for 6 months before surgery. Just had my first treatment the Mon before Thanksgiving. Praying this works.
along with our chromozonal disorder comes the health issues we deal with.
I will keep you in my thoughts and it's nice to make a new friend. I hope you start to feel better soon.
I will pray for both of you as you deal with all of this. And yes, it is great to make friends who understand.
I have physical therapy today and I have to call to get my daughter tubes out of her ears they called the other day to pre registrar her but I was not home. so on to phone calls and drs appointments.