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A Tale of Two Lees

A Tale of Two Lees

It has been the 6 week mark since our last trip to the Mayo Clinic in Phoenix and I was planning on writing a note to give you an update. It had one theme - Progress! Then this weekend happened and now my note also has another theme - a few steps back. Oh well, what is a girl to do. I almost just wrote about Mayo but I have promised you that on this blog I would be honest, even when it is hard or not what I wanted. So, today you get the two-for-one special.

Mayo! Wow! What a visit we had and we also had no idea how much greater it would even become. We saw GI (guts and stuff),  Urology/Nephrology (kidney), and were seen in the Pain Clinic. The many dislocated joints, impingement syndromes in both shoulders, a broken ankle that is not healing well, back/leg pain, and even my intestines hurt all the time led us to pursue pain management at their newly opened clinic. We felt like they would have some more creative plans and avoid any opioid containing medicines. So... that was our three day plan. As usual, everything ran on time and with the utmost care for the patient. The doctors had already studied my records before entering the room. Not much new immediately in the GI realm. The doc suggested a nasogastric tube to be done up here in Seattle. They will insert the tube up through my nose and down to my stomach. If this decompressed all of the air (actually bacterial over-gases), then a gastrostomy would be a possibility to help with the painful abdominal distention i am having. The tube would essentially be the same as a feeding tube coming out of my stomach and I would have the ability to let air out by turning a valve. Well, at least we can laugh at the new meaning of passing gas!

Kidneys looked great and the dietary and fluid changes I worked hard on for 6 weeks had paid off. New labs and urine collections showed marked improvement in all of the items we wanted to see changes in hopes of preventing more kidney stones. I have had over 20 kidney stones and had 5 during the spring trip to Mayo. I am thrilled to report that I had 0 kidney stones this trip (Oh, trust me, I know when I at least passed the larger ones) but I assumed more had grown. This was great news because we had opted not to take 2 more meds but try diet and lifestyle and it worked.

The Pain Clinic . . . Let’s just say the results are more than I ever dreamed or even asked for in my prayers. After a very thorough pain history and exam, the two doctors decided on a trial of a combo of three medicines (none narcotic). One medicine would take a few weeks to reach a blood level and the doctor warned it could make me very sleepy so take it at night. In a few cases, it has had the opposite effect and has a coffee stimulant effect. Yay me! It makes me alert so I take it in the morning which is a very hard time for people with EDS for many reasons. My mornings just got a whole lot better. The other med was a muscle relaxer not well known. Because EDS effects all connective tissue, the doctor explained my muscles were constantly trying to balance the inconsistencies in having a “wobbly” body. That is why every where you touched me, elicited pain. My muscles were always firing and being used. The muscle relaxer has been amazing the last 6 weeks and no side effects. This left us with aching joints to address. They wrote a prescription for a compounded cream made of 3 very different medications. I call it my personal miracle cream. It takes away the pain deep in the joint. Not cheap, but my beloved Steve says there is no price on seeing me smiling when I get up in the mornings or when we come in from a walk. (I was doing neither when we left for Mayo). So, that is all the great news I wanted to cover from the 6-week mark from Mayo. Thank you so much for the prayers and the encouraging notes here on Post Hope.

I had hoped to end there but we have had a little “hiccup”. This weekend we were out town with friends when on Saturday evening I had a pressure sensation building in my chest and was light-headed. The rest is blurry except for a few lucid moments. I collapsed and had to be transported by Medic Unit to the local hospital. Long story short, I was diagnosed with acute respiratory failure and had to be intubated and placed on a ventilator to breathe. I was then taken to the ICU. They were worried about my aortic aneurysm but it was still neatly tucked in my chest although it looks like it has grown a few millimeters. (Not good). Anyway, tests revealed I have a very severe case of bacterial pneumonia. Guess that’s why my chest had been hurting for a couple of weeks. I promise a quicker check on things next time. You know me, I don’t like going to the doctor unless an absolute must. I’m home resting and with my calendar cleared for a few days and an impending snow storm, looks like God planned me a little vacation in my pjs and the book list and Bible study list is long. So, not so bad after all! I love how there is always a plan in things even if we can’t see it in the moment. 

Thanks for taking the time to catch up with us! Next post will be about Steve .... stay tuned next weekend!

Grace and Peace,


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