I want to BASH my head against a wall…
At the end of most doctor’s appointments, I want to BASH my head against a wall because we accomplished NOTHING. However, I lack the strength. There in lies the problem that none of them can solve.
Ok, rough week. I had my first vitamin C-IV yesterday at the infusion clinic. I could feel my kidney spazzing for about 30 minutes. I had enough energy to sit and watch my cute little nephew Ezra toddle around the living room and amaze us with his sign language skills. And as I looked back over the day I hadn’t had any tremors. I have no idea how long it will last, but that along with the juicing and coffee enemas are keeping the tremor/convulsions at bay. Danielle took me out for some fun and got my toes done, so I have cute toes to look at in my wheel chair :). My Mom is taking good care of me.
This spring when I had a diagnosis of Fibromyalgia we were trying to go out to the Mayo clinic in FL. When we were thinking we were dealing with a continual degenerative issues, I wanted to vastly improve my quality of life and undertake a total detox and organic lifestyle in hopes of regaining some quality life. I was planning on going out to the Gerson Institute in Tijuana for 3 weeks. As I have had so many neurological issues in the last couple of months we have had to readjust once again.
The CDC has a 90 minute webinar explaining the lack of good testing in the area of Lyme’s. It is inaccurate 40-60% of the time. According to the CDC the bulls-eye rash that you get when you get bit by a Lyme’s infected tick is the ONLY time in ALL OF NATURE that you will ever see this rash. It is like this huge warning label created by God, we just didn’t know about it until recently. The evidence of this rash is proof enough to proceed with treatment.
Because I had this horrid rash for 6 weeks and then proceeded to have every other issue – including neurological issues (late stage Lyme’s) and losing the ability to walk (all typical Lyme’s) – I refuse to continually deal with the doctors who are in complete denial that someone could possibly have Lyme’s in NM and are not willing to help me find any solutions.
I do have 3 doctor’s who are “on my team,” but two of them will readily admit that for over a year they have had no idea what to do with me and while they will listen and are sympathetic, I’m the one having to put together the plan of action every visit. This has consumed my life for months, and really the last 3 years. I will continue to work with the internal medicine and infectious disease people here for long term care but I’m totally fed up with the medical care in NM.
So here is the plan over the next week…my Dad and I are flying out to Phoenix on Sunday for an appointment with a Lyme’s Literate Internal Medicine Specialist. We will continue to run more tests including a CD-57 that will tell us exactly how sick I am. He himself suffered for years through the same symptoms, and after he was in a wheelchair and unable to work he heard a lecture on Lyme’s.
After getting his symptoms under control (because their is no cure), he opened a facility treating Lyme’s with antibiotics, juicing, supplements, coffee enemas, oxygen therapy and many other traditional and non traditional therapies. I’m really hopefully that I can find a doctor that I can trust to meet my expectations using traditional and non traditional methods so that I can release some of this burden and get back to the business of living and being a wife and a mom.
Please do not leave me a voice mail, I will not get it. FB or text is all I can do right now depending on how much stamina I have. The doctor calls alone fill up my VM everyday and I can’t keep up. I really do need help watching the kids so please continue to take them in the evenings and weekends.
Aaron and I need time to talk and we have needed the kids gone from the house. It won’t be this way forever, but please keep signing up on the calendar. Usually I don’t even know what is going on, Sarah just tells me who is coming according to the calendar and it is a HUGE help. We will be moving the weekend on July 6th! More details to follow.
Thank you all for being so supportive. I have such an amazing support group. Our families are coming over tonight to watch this video and have a family meeting so that we are all on the same page. My intake coordinator at the clinic was himself a patient 9 years ago and was also supported both financially and emotionally by his large Italian family when he was sick.
He said that many of the patients are at the clinic alone. With no help of any kind. It is so sad. Their families refuse to watch a 30 minute video and educate themselves on the disease. They refuse to believe the disease even exists and take the stand that it is all in their head. Thank you all for being AMAZING, I’m blessed in so many ways!!!
If I end up at the treatment center, I will be living in Phoenix for 8-12 weeks. I have lots of family there, and lots of friends who have graciously volunteered their homes! I will work out those details later. Here is a link for more information on the clinic: