Thursday, July 14, 2016

EDS Does Have Me

July 14, 2016 0 Comments

So often I see posts saying, I have _____ disease, but it doesn’t have me.  At first, I felt so discouraged because I couldn’t say this about myself.  I have Ehlers Danlos Syndrome, Mast Cell Disorder, autoimmune disorder, migraine disorder and more, and it does have me.


Two things that I’ve noticed about the people who can say their disease doesn’t have them: they’re young, and they have only one disease to deal with.
When I was in my twenties I wasn’t diagnosed with any of these yet.  Though I had suffered with back pain from scoliosis, there were no signs yet of dislocations.  I was very flexible, but didn’t have painful joints.  If I had known why the hours of piano practice were causing my back pain, I would have dropped that piano performance degree.  
Ehlers Danlos diagnosis wasn’t going to be discovered at that time and I just took the pain as my lot in life.  I would have said, “I have Scoliosis, but it doesn’t have me”  Haha.  Little did I know then how bad my pain would become.
Later in my twenties, after three miscarriages one of my doctors diagnosed me with anti-phospholipid syndrome.  Because of this, I took baby aspirin with my pregnancies.  My next two high-risk pregnancies were successful.  My blood-tests now show that the level was actually border-line for this syndrome.  

At the time (80’s) this was a new syndrome, and I’m very thankful that the doctor treated me for it anyway.  With my new-found Mast Cell disorder, I’m sure the baby aspirin was important.

Well, my disorders (diseases-it’s all up in the air) do have me on most days.  With the disorders I have, everyone has a unique symptom grouping and level of suffering.  I’ve seen people better off than me and people worse than me.  
I just know that I can’t fight it and beat it.  It’s great that some people can.  When healthy people read all those positive stories of beautiful young ladies, just remember that everyone can’t say “I have ___ disease, but it doesn’t have me”.
@2016, copyright Lisa Ehrman

Saturday, July 9, 2016

Ehlers Danlos Syndrome Pills

July 09, 2016 0 Comments

After my last pain clinic doctor’s visit, I wasn’t satisfied with the medicine recommendation.  As I mentioned in my last post, the doctor wanted to reduce a medicine that really helps me.  The awful dizzy spells that have recently been making me miserable, are what I asked this doctor about.  He seemed to not really listen to me.  Since I see an intern for the visit and then the prescribing doctor for only about one minute, it’s not always easy to get your point across!


So, I’ve  been doing my own investigation to see which medicine may be causing the dizzy spells.  I’ve thought long and hard about which medicines were added the most recently, because the dizzy spells have just recently started.  The doctor wanted to lay off a drug that I’ve been on for 4 years.  
That didn’t make any sense to me.  The last medicine he added to my mix was Extra Strength Tylenol (4 doses per day).  When I skipped a day the dizzy spells were lessened to only 1.  The next day I started the Tylenol again and the dizzy spells were back with 3 spells before noon.  The following day, no Tylenol….no dizzy spells.  I think I may have found my problem pill.
I’ll continue not taking the Tylenol and see if the spells stay away.  When you have Ehlers Danlos, Orthostatic Hypotension, Mast Cell Disorder, autoimmune, etc…you have to advocate for yourself.  I am always reading articles, research studies, forums, and anything I can find to help myself.  Many times I can find nothing about the problem.  Ehlers Danlos Syndrome hasn’t been studied much.  Also, many of my disorders call for drugs that may conflict.

This is my journey that continues along a crooked path.  As I read the journeys of others with chronic illness, I know that they have similar journeys.  As our journeys progress we do the best we can and try to enjoy the life we have.  I love living.  My back may be throbbing, but I love the feeling of breathing.  My head may hurt, but I love to be alive.

James 1:17
 – Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.

@2016, copyright Lisa Ehrman

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