Part 5 of 13 of Anna’s Story at CanadianLymeStories.com
One of the terrible things about getting sick is that it’s so time-consuming. I’m sure many people feel the way I did once I’d had a good look at the situation: like I just needed life to stop for a while so that I could get off, focus, and get myself better. Only that’s not really how it works, is it?
Everyone’s got something. For me, the immovable piece was my family. My kids were little, and my husband had health issues of his own.
The spring between getting the Lyme diagnosis and going down to Dr. McShane my husband had his right knee rebuilt. Other things happened too, but that is the one that I remember best. I had suspended my course of study and I had shrunk my life down to its barest of bones, but this I could not get around. He was getting his knee done in Cleveland, I would be the one to go with him, and then he would be unable to walk.
It was in Cleveland that I met up with the limit of my current level of health. My husband had elected to have a new and somewhat experimental surgery. A couple of years earlier we had been to the Cleveland Clinic to see the same doctor and to have the same knee ‘scoped;’ a much smaller operation. That trip had been straightforward and almost fun (maybe not for him, but I was fascinated by the enormous hospital full of Arab heart patients and their 20 person entourages. As the mother of two small children I didn’t get out much).
This trip was not so fun. The truth is, I found myself right at the limit of my ability to cope. Looking back, some of the issues would have been remedied by simple things. I needed to rent a car rather than try to walk those weird American suburban distances to fill prescriptions. To me, this is where my “Lyme Brain” shows. One of the most pronounced symptoms I had, even when I was getting better, was a tendency to become easily overwhelmed and have great difficulty with basic problem solving. It was as if there was some glitch in my brain’s executive functioning.
Also, I am characteristically at my best in stressful situations. In the moment, I can cope. But when my husband was in post-op for two hours after the operation and no one was talking to me I became extremely anxious. When I finally saw him I started to cry. This mix of anxiety and exhaustion (he was on a 4h pain medication cycle that I was responsible to administer) combined with the somewhat random food available at the Hampton Inn in suburban Cleveland took its toll. By the time I got my husband home, I could feel how fragile the good health I had considered mine really was.
The terrible memory and greatly diminished coping skills of ‘Lyme brain’ has taught me to be thorough. When it was (finally) time to see Dr. McShane I printed out all the doctor’s notes. I got myself a binder. I lined up my past test results and made copies for her. I printed maps of everywhere we needed to go in case our GPS broke down. I collected articles with conflicting views on the significance of the CD57 test, planned a series of questions. I double-checked the hotel reservations, the rental car. And the whole time my stomach churned with worry about what this meeting would produce.
My great fear was that although I was not actively sick at the moment she would insist that I needed to take massive doses of antibiotics which would cause my body to convulse with yeast (as it is prone to do) and make me feel much much sicker than I had before I started treatment. I had read enough to realize that there would be a good case to be made in favour of this course of action.
I am left-handed, I have seasonal allergies, I had already had one episode of life-altering autoimmune disease when my body essentially broke down my thyroid and ate it. All of this made me a very good candidate for further autoimmune flare-ups when any environmental or emotional stressor was added to the mix. Of course the presence of Lyme and its co-infections exacerbated this situation exponentially. On the autoimmune spectrum in my potential future were (among other conditions) rheumatoid arthritis, lupus, and, potentially, MS.
So. Off we went. Before we headed out I sat down with my (lovely) husband and explained to him that I was very nervous about this trip to Plattsburgh and that, as a result, I was not going to be sympathetic to any aches and pains he might be having. (With a new titanium implant and a scar the length of a yardstick, he was experiencing the odd ache and pain.) He understood.
‘I know. I am there for moral support,’ he said.
On to Part 6: Dr McShane
Keywords: Strategies, getting help, planning to see Dr. McShane