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Prayer warriors for Stephanie

Battling a chronic illness is often a very lonely road. Ehlers Danlos Syndrome is understood very little by the medical community, much less family and friends. I will b[...] read more

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Update

Sure wish I was telling you the tests came back conclusive. Unfortunately not. Dr thinks possible mishandling of test sample is to blame. So she will most likely have to have it repeated which would mean another 6 weeks of waiting without treatment. One test is still not back.

Since she has continued to have major reactions daily, her internist in Greenville ordered her epi pens, cromolyn eye drops and cromolyn nasal spray to help with symptoms.. He also suggested an allergist in greenville who treats based on symptoms and might could help get her some relief until she is retested.She has an appt June 7. At that point she will again have to come off her medicine for 5 days prior. The allergist in greenvile said to treat the allergic reaction, even if off medicine. This has caused trouble once again with her employer bc she had to miss parts of days bc she was so weak and hurting so much. She ahd been trying another recommended combination of H1 and H2 blockers, but her body did not respond favorably, so 2 days ago she went back to the previous combination. She was doing better last night until she took a shower. She reacted either to the warm water, shampoo, body cleanser, shaving or shaving cream. Who Knows!!!

Today she was at least able to get to work on time. When she got there she had received an email that she would not be paid for some of the time she worked yesterday bc since her hours are from 7-4 and she came in at 12:30 and worked until 5:30, she would not get paid for the 1 1/2 hours after 4 pm.  (other employees in the same position get to count time after there regular scheduled time ends). Things are really bad at work. Sure wish she could find something different. She still is getting g"looks" because she has to wear sunglasses and scarves in the building. Sometime sits hard to believe she works in a rehabilitation hospital that would recommend these accommodations, but not accept them in their own hospital. She continues to have attacks at work due to changing temperatures in patient rooms and her office, or after lunch if something sets her off. She is becoming afraid to even eat bc of the possibility of allergic attack..

Seems she keeps getting hit at all angles.

Last night when I was drying her hair i noticed how much she had lost. It use to be so thick. Now just wrapping a twisty around 2 times, it is still loose. It continues to really fall out after episodes like this week.

This is really a tough battle for her and she wants to give up bc she is so tired, hurting and struggling to keep her job. She has to work 4 hours on saturday and Sunday as current case managers have to rotate weekends bc her boss will not hire a weekend case manager to replace the one who quit.

Tuesday evening we drive to Charleston for her classes at MUSC wed-Sun. We will be staying with Pete and Patti. Pray she has endurance to keep up the schedule and no attacks while there.

Michelle

 

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