Earlier this week I visited special Eye doctor, after a very long exam I am being referred to another specialist who treats people with brain damage, stroke victims, concision ect. He thought it was new to me that I was hearing the words your tracking is very compromised, you have difficulty following, you are extremely delayed, you have no preferal vision, ect ..,. No sir Ive been tested and tested and complaining and getting worse and worse for years, just no ones cared or figured out what to do. Today was a visit with the Rhumatologist, we will be starting the first start of Sjogrens Disease treatment now. Theres a 50/50 chance it could work on some of the issues, others a very less chance but nother the less Im will to risk a try:) he is working with my neuromuscular specialist at U of M. One med is a very heavy dose of a drug used to treat Melaria and RA and the other is a very high Steroid tapering down for a month to test strengths to see if it helps with inflammation at all. Theses may not help at all Im being repeated back to what seems a million times through the whole appointment, almost like hes trying to not get my hope up so when he sees me next I dont cry and tell him Im the same. Another huge issue we face. Steroids are one of the number one no nos for Chronic Lyme disease, only to be take in dire need.... Well I say we are at that point.... My Lyme is hanging low and dormant these last few weeks, so the very scary thing that will keep me up tonight~ will this pill that I have to take 4 times a for the next month flair that darn lyme bacteria right back up that I worked sooooooo hard putting dormant?!?!?? I have been completly drained lately, exhausted from doing next to nothing, the curly headed toddler and I both have bedtimes around the same time! Usually by 7 I am unable to form words and I need to be put to bed. ( at least Im not in bed all day!!!) I spend a lot of energy of muscle spasms, clenching and joints locking. I get very sore from seizures and having to be unlocked. The brain fog has been Horid lately, lots of confusion when Im tired. Its hard asking doctors questions about all your symptoms, trying to figure out whats connected with what disease, when even at this point they STILL are unsure, and they are still thinking theres more diagnoses to be had, that all the puzzle pieces arent in. They are supose to reasure, you not leave you more confused, when I ask a speciast a question their reply should not be you might very well be right, or that could be, you are a Younique case, this is very rare, we need to study this I am just tired, tired of being so patient! Today I got a call from a very very dear friend who also has Chronic Lyme (has tested positive, but hasnt been able to start treatment yet) the hoops she is having to go through and the honest to god abuse you get from naysayer practitioners and IFD that do not believe in Chronic Lyme Disease. Thankful for another very close friend that was supporting my family this winter when chad needed her the most is now able to be a shoulder for her,Angels are planted out there among us! Chronic Lyme Disease DOES exist, its REAL, Im REAL, so are the other 300,000 +cases that the CDC didnt recognize and told us its all in our heads! Please help spread my familys story, maybe they will share it with someone and they will share it and maybe it will save a young mom before she looses multiple babies, her business, her home, her strength, her ability to drive, care for herself, play with her kids, the chance of working or having a normal life an having any independence again! Share by creating awareness that Chronic Lyme Disease needs to be treated! I thank you for your support, thank you for your prayers, all you good vibes and jojo sent to us positivity keep it coming:)
Posted on: Fri, 04 Jul 2014 02:29:09 +0000
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