Well this is my first attempt of writing at least weekly. We are out of school now so I must combat laziness and Nicole from being on the computer all day long !!!!
Nicole had a rheumatologist appointment on Tuesday. Her first appointment was in Feb. I really like the doctor but had problems with the nurse who I guess has been let go so lets see if I have better luck with getting paperwork and calls returned. She addressed Nicole's vitamin D deficiency which isn't at the critical state but still low. She has her taking 4000 IU's of vitamin D daily for the next three months and then her vitamin D will be re-tested and see where we are at. I guess vitamin D deficiency can cause joint pain so we aren't sure at this point if her pain is related to the Ehler's - Danlos syndrome or from vitamin D. She also said she wanted Nicole to start walking on most days. We start out just walking to the end of the street and then work our way up. She would like to see her participate in cardiac or pulmonary rehab but she can't order this her cardiologist and/or pulmonary hypertension specialist must. She had blood taken but I'm not sure what for... should have asked. I should have asked for a script because they charge $10 for it and she had to get her monthly blood work which we decided to wait a couple of days so she didn't get stuck twice in one day and she wasn't feeling well. We will go back in three months.
Rick had a cyst removed from the back of his neck so I have had too change the bandage and clean it etc. yuck..... I would rather clean up puke :o) It looks like it is doing well and I don't see any redness or sign of infection.
I made a post yesterday that I had posted on Facebook on Wednesday I believe about me becoming a peer mentor for Tyvaso. I had an interview which was 1 1/2 hours long on Friday evening. I think it went pretty well. They said I will be an official peer mentor when I complete the training and take and pass a quiz. The training is being revised and they have to have approval of it before they can send me the link so I won't be able to get started for at least a few weeks. They will also send me a welcome pack when the revisions to this are made also. I'm really excited. I will have the chance to talk to people via email/phone about the medication and answer any questions they may have. I will also have the opportunity to travel and speak at events at their expense.
On Friday, I took Nicole to the hospital for her bloodwork which is done for another month. We will see if they took her CBC and her platelet count is low still or most importantly gotten any lower.
I believe that this is about all of my news from the week. I know I live a very exciting life but it's mine and I love it.
Hugs:o)
Jane
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