Weekly update
Monday I had the opportunity to see an EDS specialist that had at first seemed impossible to get into. Thanks to my primary doctor's support and regular calls on my behalf as well as the prayer support of friends and family I was able to see his physician's assistant last month for a screening. She affirmed that I was a candidate for this specialist's treatment and sent me off to get an MRI and do the Spinal Stability test that I completed last week so that I could come prepared to meet the specialist and begin therapy. He walked into the office, greeted me and my husband, and then gave the following speech (paraphrased as I didn't record it 😉 ), "I assume you're interested in Prolotherapy since that's what I do, but before we can consider that you need to get past four mental leaps:
1. This is going to hurt and you can't do anything to help the pain
2. You're going to have to do this repeatedly, not just once
3. You will be paying me a lot to hurt you and insurance won't cover it
4. This may not work"
Thankfully I was aware of all of these things and had already made these "leaps." We discussed the findings of the Spinal Stability test and decided that the wisest course of action was to address my SI joint first since any help we gave the thoracic spine may be undone by the instability in my pelvis. The challenge is that the SI join is large and requires more injections to do, creating more inflammation, which was my primary concern to begin with. I have chronic Lyme and potentially Mast Cell Activation Syndrome (MCAS) both of which do not do with with inflammation. The doctor assured me that he had worked with others with this particular "constellation" of conditions (EDS, MCAS, and Lyme) and that there had not been significant flares caused by the Prolotherapy. The treatment calls for at least three sessions of injections to start, with more if needed, so just to be safe we decided to do just the right SI on the first session, then if that went well to do both the right and left for the next two. After this first set of three treatments, I'll do another spinal stability test and see if it helped, adding more if it helped some but not enough, and eliminating this as a treatment option if it didn't help at all. My first session will be mid-July!
Last week at my primary doctor's appointment I had mentioned to her problems that I've been dealing with in my left ankle, and she said that I should see a foot doctor to assess that, but as I wrote before, I felt like I was already dealing with as much as I could handle, and I decided to put that off for the future. My husband, though, was quite concerned about this issue and asked me to look into it sooner rather than later. So, while we were seeing the EDS specialist, I asked him if my ankle would also potentially benefit from Prolotherapy. He shared that it might if my problem was caused by laxity in the connective tissues, but if it was caused by other damage then it wouldn't. In what I can only attribute to a "God thing" he went on to tell me that one of the top foot and ankle specialists, who was technically in retirement, visits his clinic every once in a while, and that he could give me a referral to see her. We were able to make an appointment with her for next week! I just have to get an x-ray done before then...
Tuesday's appointment was for a massage, which I very much look forward to as I have an amazing massage therapist that has learned with me on my health journey. Unfortunately, I developed a really bad migraine on Monday afternoon that lasted through Tuesday despite the help of my masseuse.
Wednesday dawned bright and early and my son and I headed back to the city for my next filling replacement appointment with the Naturopathic Dentist. Last week's appointment went pretty well, taking about 90 minutes and leaving with just a little soreness for a few days in my jaw joint. I anticipated a similar experience this week but was quite surprised when the appointment actually took nearly four hours! I had scheduled an x-ray appointment for later in the afternoon, but I had to text my husband and ask him to reschedule while I was still in the midst of the dentist appointment because it became clear that I wasn't going to make it. This time, once the local anesthetic wore off, it felt like I had been punched in the cheek bone above where they had done the work, but three days later that is starting to wear off.
Thursday, I got a break from doctor appointments and was able to do some meetings and work for my church as well as spend time with my family.
Friday morning we were off again to Physical Therapy, which is still a little over an hour away, but in a different city than my other appointments. I love my therapist, but these appointments are challenging and painful. We had to leave straight away and head back to the big city for another appointment with my primary doctor, this time just to do a magnesium IV so it was shorter than last week. I caught her up on all that had happened since my last appointment, and she was excited for the progress. We hit terrible traffic coming home and didn't arrive until after 4pm. My sweet husband took us out to dinner so I didn't have to cook after all that.
Next week is looking a lot lighter with just a few local appointments and the one in the city with the foot and ankle specialist. I'm looking forward to a somewhat slower pace!
Here's the thing: Yes, it is good to pace yourself and know your limits, but sometimes you just have to push through and do what you have to do. This was a tough week and my body told me clearly that I did too much. I don't know what I would have changed though. I'm just very grateful that God gave me what I needed to make it through and I'm thankful for a restful weekend 💓
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