Prior to the five day Lemtrada treatment in ’16, a team of lab consultants and vampires phlebotemists took eight vials of blood along with the contents of my bladder to establish my base-lines for what my normal numbers were. My thyroid, and red and white blood cells were all completely within a normal range in that analysis two weeks prior to the Lemtrada commencement. Even with Multiple Sclerosis, all these were very much within the range labeled “normal.” I’m explaining this because the following will be somewhat of a brief meaning of the physiological changes that occurred following treatment. We knew of the potential side effects that could happen and from reading the disclosures, there were definitely adverse side effect occurances. With the information that MS could be eliminated through the treatment, I saw the treatment as a calculated risk.

Well, I became the Lemtrada anomaly. My neurologist received reports following those monthly labs to show how my body continued to respond to the treatment. About five months post Lemtrada my thyroid started showing things were changing so off I went to an endocrinologist who put me on medication to control the overcompensating hyperthyroid and a few months later, it became hypothyroidism for my underactive thryoid. Apparently my thyroid couldn’t make up its mind.

In the middle of all this the endocrin diagnosed me with Hashimotos, with vague instructions to stay away from gluten. I thought for a second that that was going to be easy to stay away! How silly was I? Once I researched gluten and found that it was in bread – I love baking bread – and that gluten is in so many of my favorite things {read as nearly everything} many candies I enjoy that include red licorice. But then once I became intentional to stay away from gluten for a month, which began in February 2019, things changed. Those chronic gut aches finally ceased. Over time, gluten-free has become more of a staple in grocery stores as gluten-free snack options are more available. While all these changes started in me and I needed to create my new normal , I was delighted to discover gluten-free snacks in stock with Amazon Prime. Did I mention Gluten-free chocolate covered pretzels?!?! Yum! Simply delightful.

Then a couple months later, the medication changed back to control my hyperthyroid’s overactive antics, but that didn’t go well but after all the nonsense, my numbers finally leveled-off. Then, of all the obscure causes why I didn’t respond well to the prescription, my endocrin said I was allergic to the dye in the prescription pills, so she wrote the Rx in such a way so my pharmacy filled the Rx with non-dyed pills. But then my encodcrinologist moved to Sweden and I was not responding well to the medication anyway so I opted to elimininate the idea of finding another endocrinologist. I didn’t really like her. My first appointment with her was weird. She asked many questions about when and how the MS was diagnosed and in that I explained that auto-immune was in my genes so it was definitely in my genetic make up to rear it’s ugly head. The doc’s take-away was telling me that I missed my calling to go to medical school and figure out why my MS was affecting me and why auto-immune put a target on my family or why Lemtrada screwed up my physiology. Apparently her playbook for me was to discover why I should’ve become a world-reknowned doctor who discovered a cure for MS. I’m not kidding or exagerating about one iota of this.

I would love to say I fired that doc, but timing was such that when I decided to not see this endocrin any longer, she went MIA over-seas. I took the opportunity to be in control, which I should’ve done at the beginning of all this nonsense and researched thyroid supplements and those most highly rated on Amazon. I read many reviews and ordered one supplement. I took for a couple months, but then after I decided that chronic diarhea, even as a temporary side-effect really sucked, I ordered a different highly rated supplement. And “Behold! No chronic diarhea? We had a winner!” Said Jenn after taking it for a month with no unwelcome side-effects. So with the supplement, I felt decent and have continued taking it for a few years now.

Then last September, my (now remember I had to agree to monthly labs for five years following Lemtrada.). Things started changing again with my physiology and my neurologist called and asked me to take a copy of my labs with me to see my PCP. What’s changed this time? I started feeling sick in mid-September ’20. Those labs said I was anemic. Apparently, as of February I’m no longer anemic, but if that’s true why am I still experiencing heart palpitations? Coincidentally, I just felt lousy. This coming December, it will have been five years since Lemtrada ended, but changes were still happening. My internal system has allegedly flushed the toxic chemical cocktail from my body, but things are going awry. For a couple years I put reading my Bible on hold while I was working through my anger at God for allowing our first foster placement after two years with us from birth, be sent to an unknown distant family member in St. Louis.

Perhaps the stress from that situation was another culprit for making my health go sideways. Whatever is going on, I feel like I’m in a fight for my life right now. My new Endocrin tested me for a list of about 25 things in December. A few of those things included conditions related to osteoporosis because with my initial intake appointment with him, he looked at my prior bloodwork and saw that in my urine, there is a high level of calcium, which isn’t normal. My body is leaking calcium. I’m too young to have osteoporosis. Which means I will need surgery to put a stop to this and have my parathyroid removed. I sought a second opinion and that doctor was in agreement that the parathyroid is indeed the problem child. I have an appointment for a bone density scan which should confirm the need for surgery and with the parathyroid removed, it should put a stop to the “calcium leak.”

https://youtube.com/watch?v=X1eMZWiOJ0a0&feature=share

Last June I began reading my Bible again and it’s timely that I am reading Job in the middle of my own health nightmare. God is faithful. I’ve seen and experienced healing in myself and others in years passed. But I’ve doubted him so much and prayed for my own end in order to to be rid of what I know will likely be temporary pain and discomfort. The pain and chronic discomfort that I’ve felt in the last six months is like nothing I’ve experienced before. God healed my MS in 2005. He healed my Dad’s cancer and continues to keep it away. So how dare I doubt his goodness?!?! One of B’s clients has a mom who is also a believer and she told my husband she had a dream about me and that she received a word that I would be healed. But like the Isrealites and their chronic complaining through the desert for 40 years for an 11 day journey, I have to keep my faith and remind myself that like Danny Gokey’s song, I “Just Haven’t Seen It Yet.” The light at the end of the tunnel has become faint, but I have to have faith that my struggles have not been in vain.