I'm still here...

It's been a long time since I last posted. So much has happened. So much has changed. I'm still here; I'm still me. And I'm still sick. Everyday is a struggle. I am disabled and have been unable to work for the last 5 1/2 years. The best description of my illness/condition is Severe Dysautonomia as a result of both Late-Stage and acute Lyme Disease infections. The neurological "damage" or aftermath of the infection. To the best of my knowledge, the acute infection was treated with a rotation of IV and oral antibiotics (and vitamin infusions, supplements, detox therapies and many other supportive therapies) over the course of approximately 1 1/2 years. That was several years ago and you can find posts on the subject on this blog. I don't use the word "cured" when I talk about Lyme Disease because I am not convinced that is possible. I know the acute infection has been treated effectively. But I leave myself open to the idea that the dormant form can persist and reappear years later, as it did with me once already. In my case, my doctors and I estimated that the initial infection was lying dormant for 10-15 years before I was diagnosed. And when I was diagnosed, it was with both acute (IgM) and chronic (or Late-Stage) (IgG) forms of Lyme Disease (along with Erhlichia, Mycoplasma Pneumonia and Epstein-Barr infections). But that was several years ago. I do think it's possible that the infection is still present and dormant but I don't have compelling evidence either way on that subject.

Now, I identify most with the Dysautonomia diagnosis. I still struggle with the same major symptoms as I did years ago:
-Severe musculoskeletal pain (Severe Fibromyalgia), SI and hip joint pain being the most severe along with Sciatica
-Heat intolerance
- Severe, chronic Fatigue
-Weakness
-POTS (low blood pressure and tachycardia)
-Brain fog (problems with cognition and memory)
-Anxiety, panic attacks and OCD
-Sweating
-Vitamin D deficiency
-Fevers
-Nausea, no appetite
-Hypoglycemia (low blood sugar)
-Hormonal imbalances (PCOS)
-Headaches

And these new or worsening symptoms:

-Edema
-Neurogenic bladder
-Increased nausea, upset stomach and lack of appetite
-Random neurological sensations (numbness, tingling, stinging, etc.)
-Sleep Apnea
-Sensory overload (now I'm so hypersensitive to sound that it startles me 10-20 times a day, causing me to gasp and contract muscles all over my body, causing sensations of hot, cold and numbness all over)
-OCD (had gotten much worse)

And many, many other acronyms and symptoms...

But some symptoms have improved!

-Tachycardia-for the last 6 months, I've consistently gotten normal heart rate readings of 70-80 BPMs. Even 68 BPMs a few times! That's the lowest, healthiest I've ever seen! And while I do have bouts of tachycardia, my heart rate is 75-85 more often than not these days. I find special meaning in this improvement because tachycardia was the first measurable symptom that something was wrong with me, the first thing doctors could see, all those years ago. So a part of me, a very cautious part, likes to think it could be the first of many improvements. Note: beta-blocker dose hasn't changed. Nor have triggers (like caffeine or anxiety).
-Neck pain (used to be constant and severe during acute Lyme infection)
-Sore soles of feet in the mornings
-Fewer panic attacks
-Less nerve pain in arms and legs (without Lyrica)
-Hypoglycemia is much more manageable, crashes infrequently
-Less pain medicine (long-acting dose has stayed the same, needed less instant release pain meds for the last year!

And a few others that I can't think of at the moment.

I have made a ton of lifestyle adjustments. And I've been in therapy for OCD for over a year now, something I needed for a long time. I'm still on a lot of medications and take a lot of vitamins and supplements. But I have fewer doctors (Dr. Reifsnyder retired and closed his practice) and I see them less often. After so many years of tests and specialists, I got really burnt out. I was exhausted and not making progress. And some of the specialists I continued to see weren't prescribing or managing anything anymore (ex. endochrinologist and nephrologist). So, along with the support of my doctors, I stopped seeing some of those specialists and focused on home care and restorative rest. And restorative rest continues to be the most effective way to manage my illness. It's also still one of the hardest things to achieve.

I'm writing now, after so many years, because I need to reach out. I need to tell my story to get it out of my system, as a form of therapy. But I also need to connect with other people struggling with invisible illnesses. Cutting back to get the rest I need has further isolated me. And while I am an introvert in the truest sense of the word and do well with a lot of alone time, even I have a limit.

So whoever you are, thank you for reading this. I hope it brings you some comfort or helps you feel less alone in your struggle. I will try to write regularly again.

And if you're reading this and have something to share, please do!