Don't eat too many fortune cookies

Per your request, dear readers, I will provide some clarification about how all these various and sundry medical issues intertwine. Whenever I talk with people about my current medical\mental health, an image of a growing grapevine filmed at high speed comes to mind. All those little tendrils, reaching out for the sun and curling up and over their grape stakes and over one another. In my body, those tendrils seem to be attempting a death grip on my autoimmune system.

So, we start with the diabetes. Type 1, as I have previously mentioned. I’ve been “officially” diagnosed for over 27 years. I have an insulin pump and check my blood glucose levels whenever I eat something.

Then there is the Hashimoto’s Disease. The definition, as provided by the Mayo Clinic, say this: “the immune system attacks the thyroid gland. The resulting inflammation often leads to an underactive thyroid gland (hypothyroidism)”.

I take a medication for this and the drug side effects are minimal, if any

When I was in college, I was given blood pressure medication as a follow up to a very severe and misdiagnosed kidney infection.  Stupid college kids! What do they know about following up with prescriptions? Okay, they should know and I generally did but somehow I didn’t understand that this was now a life-long blood pressure issue so I took the medication off and on for several years. So, now we add high blood pressure. More meds.

High blood pressure issues, along with the Type 1 diabetes cause stress to the kidneys. That stress turns into Chronic Kidney Disease (CKD). Our friends at Google Health share this information:

“Chronic kidney disease leads to a buildup of fluid and waste products in the body. This condition affects most body systems and functions, including red blood cell production, blood pressure control, and vitamin D and bone health“.

There are six stages to CKD. I’m at Stage 4. For more information about the stages, check out the National Kidney Foundation website.

People who suffer from CKD often develop a condition known as secondary hypoparathyroidism. The following description provided by Nephrology Channel:

“With the loss of kidney function, phosphate accumulates in the blood. Excess phosphate in the blood reduces levels of blood calcium, and low blood calcium levels trigger the parathyroid gland (located in the neck) to release more parathyroid hormone (PTH). PTH then dissolves bone tissue to release stored calcium and raise the level of calcium in the blood. This chronic cycle of events is called secondary hyperthyroidism.”

Remember that broken foot I mentioned? Yeah, its lack of healing is related to this condition. There are a couple of different medications involved with this condition, as well as vitamins and supplements.

Are you still with me? Thrilling reading I know, but pertinent to story. I promise.

So, we have covered Type 1 diabetes, Hashimoto’s Disease, CKD and Secondary Hypoparathyroidism. What could possibly be left? A bunch of other things but these are our main players at the moment. Onward to the cause for being on disability…

Waayyy back in one of the first blog posts, I mentioned that I had been working a lot and then finally collapsed. What did me in was the muscle and joint pain I was experiencing. At first, the ER doctors thought I might have Lupus. Dr. Olive, the endocrinologist ruled that out. Dr. James, my first rheumatologist figured out it was a bad reaction\side effect to one of the medications I was taking. We switched it out and things got much better. And then they got worse.

I was still in significant pain and while the systemic inflammation had decreased, it was still present. I tried a strict gluten free diet, they two different meds, a lot of physical therapy (which I still do) and nothing made a difference.

While at an appointment with Dr. James, he asked me to stretch my foot. I stretched the foot and my planter fascia tendon snapped. It’s hard to walk out of a doctor’s appt. when you can’t walk. I immediately chose a new rheumatologist.  

The inflammation continued to flummox my entire team of medical professionals. Meanwhile, my CKD was rapidly getting worse. More tests, more specialists. Not much progress.

And here comes what we now believe is the key to these many issues: In March of 2008, I had Lap Band surgery. I had high hopes. My body did not agree. I lost ten pounds. That was it. I then started having complications with eating and stomach acid. I’ll spare you the details but in June 2010, I went to see a gastric surgeon about removing the band and having gastric bypass.

Why the weight obsession? We have all heard about the benefits of being at a certain body mass index and with my health issues, it was even more crucial. By the time I saw the surgeon, it was anticipated that I would need a kidney transplant in five to six years. Transplants go a lot better if you aren’t overweight. In fact, most people cannot receive a transplant if they have a BMI of over 35. More on that another day. 

When I met with the surgeon, I told him about everything that was going on and why I wanted the surgery. The first thing he said to me was “It sounds like your body is rejecting the lap band. Perhaps you are having an allergic reaction to it”. Everybody on my medical team was quickly in agreement. We scheduled the surgery because I knew it was all covered by my health insurance plan.

And then Husband was recruited to work at another company.

I can’t believe I didn’t think to have him ask about the medical plan but, such is life. Everything else about the company was amazing. Fantastic opportunity, fantastic promotion, at a fantastic company. I encouraged him to take it and he did.

When the surgeon’s office called to check on the surgery coverage with the new plan, we found out that they didn’t cover any weight loss related treatment, regardless of medical necessity.  I thought they couldn’t possibly be serious and yet here we are, five months later and still no surgery.

All of this distilled down means the following: The ongoing allergic reaction to the lap band is putting a tremendous amount of extra stress on my system. It is taxing my organs, muscles and bone structure. All my previously diagnosed conditions began to become more severe and here we sit, still fighting with the insurance company.

Sometimes, life hands you lemons and forgets to tell you where to find the sugar to make that proverbial lemonade. I’m turning over boxes and banging heads together to find that sugar but when I do, it is going to make the best tasting beverage I’ve ever had.