I guess it doesn’t surprise me that I ended this year in the same fashion that I have lived most of it, dealing with a flair that had me with my eyes, and sometimes ears, covered. Praying the pain would ease and I could breath a little again. It was a day full of tears and frustration. Even talking, moving and listening hurt. Pain so bad that at moments I couldn’t open my eyes. It was a tough day, but one that has become increasingly common.
It’s been some time since I have been able to post, that is not to say I haven’t tried. I wanted to update everyone one more time for this year, as to what has gone on since my testing in the hospital. Needless to say, none of it really surprised us. So, let’s update everyone…..
- Test results from my EEG – “They are non-electrical seizures. Dr ‘X’ said he gave you a website to visit. Check that out and if you have any other questions let us know.” – Yes, that was the actual response I was given over the phone. Nothing more. I was treated like it was “all in my head” and that it was a psych problem. Again. This is such a common thing with Lyme Disease though, sadly.
- 30 day cardiac monitor test results – “All clear” was the response. They detected multiple skips but the neurologist said they were “negligible”. I beg to differ with this, as it has proceeded to get worse since the day that I was taken to the ER, and since my cardiac test was done.
- My naturopath and my MD are now working together on my treatment and trying to figure out what will work best. We were delighted to find out that my MD acknowledges and treats chronic lyme. So they have teamed up to try and help.
- My MD decided, after my naturopath sent over a formal referral, that she wanted to referred me to one of her colleagues that treats Lyme Disease, as he would be more equipped to help treat me. This is especially true with how complicated things have gotten.
- My referral to said specialist was approved Dec. 12. We were not informed, neither was my Dr. The hospital where the specialist works changed their fax number and didn’t tell anyone.
- New number tracked down and fax sent. Referral rejected by specialists office due to not having a 2 tier Lyme Disease test, which my MD didn’t inform me I had to have BEFORE I could see the specialist. They hadn’t even ordered it.
- Blood test drawn on Friday(12/30/16) and now awaiting the results. If it comes back negative, which we are expecting and is WAY too common, we will be unable to see the specialist. This will be disheartening, as this would allow us to get all my testing and treatment covered by my insurance. If it is denied we do have a couple other avenues we will be exploring, but seeing the specialist would allow for the “easiest”, and most affordable, next step.
So… ta da… I no longer have a neurologist, as their office has closed down. So we move on from here. We just try and take it one moment at a time.
2016 has been a tough year. It has been filled with, what feels like, a lot more sliding back than moving forward. I have started having more and more troubles with reading and writing, so forgive me as my paragraphs get shorter. They will, undoubtedly, get more jumbled too. So, again, forgive the lack of “flow” to my writing.
Here is hoping that 2017 brings health, healing and happiness for myself and our family. I am not one to sugar coat how difficult this has been on all of us, and to say it will be a relief when this hellish experience is done… would be an understatement. I can only hope that we soon find a direction and that we are able to find our road to better health.
Until the next time…. thank you again for all your thoughts, prayers and support….