Lizzie in Ma Posted November 7, 2012 Share Posted November 7, 2012 This has been the most difficult time of her life. I have to be grateful for WTM schooling year round through 8th grade right now and her internship for credit because it pretty much put her a year ahead credit wise for high school. She lost most of last year and has been unable to do much so far this year as well. The good news is that if she takes this year and her senior year to finish the work she has at present, she will still have 8 credits more than she needs to graduate. Small mercies. (background, she has had Lyme for about 6 years before we got the diagnosis) Her health had a small upswing over the summer after 6 months of heavy duty Lyme meds but then we had to pull her off all meds and deal with the damage they caused to her stomach and intestines. We are, right this minute, pretty much back to square one. She has unrelenting headaches, stabbing pains, ulcers from the meds, nausea, vertigo, and overall body pain not to mention fatigue. Her memory is a disaster, her cognitive issues and brain fog are a huge part of why school is a total wash. She also has auditory sensory issues. Having an "invisible disease" is hugely difficult for anyone let alone a teen. Her friends don't understand and haven't been very nice. In fact, I am pretty upset with most of them. We went in yesterday for another PT evaluation, they do them every 8 sessions. What a blessing, what a day, what a revelation. Her amazing PT loves her and admires her strength but said enough is enough. She is calling our primary and telling her that her recommendation is to go to a specialist in chronic pain and illness and work on the whole mind/body to get her better including a therapist she knows who understands this sort of thing. I am so grateful that someone finally realized how desperate this kid is right now. How hopeless she has been feeling and how much she has been dealing with all this time. Never mind adding in the traumatic loss of her beloved aunt last month. I am just sad that our dr., to whom she has told flat out how depressed she has been and about her anxiety issues and panic attacks, has never once said "let's address this". I am sad that her specialist in Boston just kept saying stick with the PT and get a good night's sleep and give it time. I had a problem with him in the first place because I strongly feel that "Post Infectious Disease Syndrome" which he says she has, is bull****. So, we are feeling hopeful at last that she will get the kind of help she needs. Just needed to share. Keep her in your prayers if you are of a mind to do so. Quote Link to comment Share on other sites More sharing options...
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