I keep day dreaming of being better cause honestly I thought I was improving…that little check list of symptoms at my Lyme doc looks better but yesterday I woke up with a fever close to 102 and felt like hot poop left out in the desert sun. I had dreams of adding to my family and running a marathon but after yesterday I feel like I’m never getting better, like this is a life sentence. I haven’t left my house in over a week so I wouldn’t catch any bugs because we have a Disney trip coming up and then I was to headed to Boston to visit family. I had pulled off what I thought was adhesive but was it a tick?? Or did I get a mosquito bite? Or is it still a bad relapse? I’m so over this! Maybe it’s time to sell all my belonging and head to Germany???
Doctors I’ve had a lot lately but I’ll try to give a quick summary. I had my EEG (test done to check for seizures). You lay in a bed for 1 1/2 and they check brain waves etc, they flash a light (strobe type thing) in your face last couple minutes and then make you hyperventilate to try and cause a seizure…fun.
I had my neuro follow up. The EEG was normal. The MRI was “essentially normal”. That meaning they found one white lesion. He said because of my migraine history that is normal. But anyone who’s familiar with chronic neuro Lyme also knows that white lesions are found in Lymies’ brains and that’s why many times Lyme is misdiagnosed as MS. So who knows if they had performed this test before they probably would have found more before treatment…
Next up cardio…he starts to tell me my 30 monitor looked “fine” but we could call in a specialist that could insert a needle through my groin into my heart!!? Huh what you just told me I was fine. I asked about the home apnea study. “Who ordered that” he says. Umm you did? *leaves comes back 10 minutes later* “ahh unfortunately you have apnea. Ding ding ding. I thought so. So he then says “I ah guess running ok”. (He cannot get through one Daggone appointment without his diatribe on runnning”.) “but ahh maybe not the knees the back, causal ok, no competitive, only Olympians”. Ahh sigh.
So the plan is for me to get a CPAP.
Next up my Lyme doc. He looks at the sleep apnea study and it appears off: one of the heart rate averages doesn’t add up and one heart rate high appears too high. It still appears I have sleep apnea but it may not be as severe. I think when we move it may be worth seeing a sleep doc. Anyway the plan with him was to keep where I was with Meds for now and then up the plaquinol when I get home to visit the family so I could enjoy my Disney trip without a herx. (Not sure I’ll enjoy it now but…). I could also take a break from Meds while I was at Disney (Lyme is really a full time job with just med taking and organizing alone). I have a phone appointment with him end of June.
The Move We had thought of next move this summer would be back to all our old haunts and loves in North Carolina but then were surprisingly told that wasn’t possible anymore and we could go to either Kansas or California. But at the last minute there was an opportunity for Quantico Virginia. So this summer that’s where I’m headed. Closer to family and I’ve heard there are many docs in the DC area for Lyme.
I’ve had a rough go of it this spring with allergies, many colds and now this…but I managed to do several yoga challenges and fairly regular dog walks. I also did the team sparkle virtual 5k for Rett syndrome. I have been pretty layed up lately.
Good news: I was selected as a crazy compression ambassador. I mentioned in my tips for running/exercising post that compression socks have been so helpful in allowing me some exercise. I have awful leg pain a lot and this helps. This brand is awesome because they are affordable, made in the USA and come in so many fun colors and designs. Check em out
While in San Diego I finally got my tattoo that I booked back in December. Buju tattoo is the name of the shop and the owner was from MA too, how perfect. I mentioned awhile back here the idea of the lotus came from the end of my yoga teacher treating while suffering my first miscarriage my yoga teacher includes something about the lotus in my card.
The idea sprang from there and I wanted to somehow include the birthstones of all my babies. In total now 4 in Heaven and my miracle on Earth. So Brianna designed this: with each color or the flower representing a birthstone…I just love it.
So to close
I’m not sure how my travel plans and trips will plan out with how I’m feeling..I could use some prayers. I got a nice phone call this morning from an old friend that did lift my spirits some. I hope that I improve some in the next couple days. And if you’re suffering I hope you improve too.