Tag Archives: appointments

Just Add It To The List

The life of someone with a chronic illness is not easy. Not only do we have to live with the cards we are dealt, but we are constantly bombarded with new ones. Every time a new symptom pops up in our lives, we have to question it: Is it caused by the tremendous stress we are under? Is it a new symptom to a current illness? Is our illness getting worse? Is it, Heaven forbid, a NEW illness?

The sad truth is that those of us with a chronic illness -like fibromyalgia or the plethora of autoimmune diseases out there- are susceptible to developing other illnesses. We can lose track of all the diagnostic labels thrown at us by well-meaning doctors. It is a dirty secret in the fibromyalgia community that none of us have just fibromyalgia. If I counted all my illnesses using my fingers, I would easily need both hands. Now image trying to take medications for all of those! I am lucky enough to have found medications that treat multiple symptoms and illnesses.

Recently, I succumbed to family pressure to jump down the rabbit hole of medical tests yet again. After enduring so many tests in the past with little to no helpful results in the end, I was not eager to go through them again. However, my symptoms were not getting any better and those who care for me were very worried. For three years I was losing weight at a steady rate without intentionally changing anything I was eating or doing. I would have flare ups of symptoms for discreet amounts of time – e.g., nausea, vomiting, abdominal pain, bloating, inability/desire to eat, feeling full quickly.

I started going to a GI doctor at a prestigious hospital hoping she could figure out the problem. If anyone ever complains that socialized healthcare in Canada or the UK is slow, they obviously have never tried to be diagnosed in the US. Unless you are in critical condition (i.e., dying), the process can be painfully slow. It can take up to three months to get an initial appointment with a specialist. Then, another month to get in for a test and another month to see the doctor again. If your tests come back normal -like mine do- this goes on and on. After almost eight months, I still have no official diagnosis but have dished out the overwhelming sum of almost $1000. How does one pay that bill on disability?

I was so distraught over the last test coming back normal that I called my doctor. I was upset and discouraged. I honestly did not see the point in going through more tests. I was finally on an anti-nausea medicine that helped enough to stabilize my weight. I was to the point where I was just going to suck it up and suffer through my debilitating flare ups. I was already on disability. My prospects of ever working full-time again were slim to none. So what if I was in more pain and more disabled than before? What difference does it make? It isn’t like they give you more money the more disabled you are. There is no prize for being the “disabled-est.”

I would like to congratulate my doctor for not giving up on me. She is also the type of doctor who doesn’t blindly follow tests. She knows they are not always correct. She knows that they can be normal at times even when you are really sick. She knows that if I am not in a flare up those omnipotent tests are not always omnipotent.

She came up with a working diagnosis – gastroparesis. It basically means that during flare ups, my stomach forgets to digest food so it just sits there for hours and hours and hours. I can vomit my dinner six hours later. That, my readers, is not normal! Instead of waiting for a test to comeback positive, she prescribed medication for it.Unfortunately, the medication does not always work and has a list of permanent side effects. Those are side effects that do not go away even if I stop taking the medication. I am not sure I want that added to my already complicated life. So what does that leave me? You guessed it! I need to suck it up and live with it…

The Bait and Switch Technique

As the leader of my local support group South Jersey Connections, I take it upon myself to try to attend any free seminars on fibromyalgia, chronic pain, and chronic fatigue syndrome so I can share the information with my members (many of whom cannot attend due to their health). I have noticed that some brilliant (and I use the term loosely) person create a PowerPoint presentation on fibromyalgia that mainly focused on vitamin D deficiency and aluminum toxicity that can be cured by taking malic acid. This PowerPoint has been distributed so thoroughly into the healthcare community. I have seen it so many times I could recite it by heart.

Last Thursday night I attended yet another FM seminar with the same PowerPoint presentation. I was tempted to simply walkout when the chiropractor/nutritionist started his spiel but decided to NOT be rude and give the guy a chance. He obviously did not know how well-used the slides he was using were. As expected, the actual presentation was the same but, thankfully, the Q&A was more interesting. He really let his knowledge and experience shine through at that point and I was impressed. He had a completely different approach to improving one’s eating habits and dietary changes than the standard one-size-fits-all food pyramid that every nutritionist I have ever worked with uses. He focuses on your symptoms and blood work. He looks for signs of deficiencies in vitamins, hormones, and other areas. He looks to see if you are in an optimal range instead of the default ranges labs use (which are not the best ranges in most cases). He will treat borderline deficiencies through supplements and dietary changes. Having personally tried just about every approach out there (and having a diminished savings to prove it), I felt optimistic.

If you have ever attended one of these free seminars, you know the doctor or healthcare professional tends to offer a free consultation as reward for sitting through their presentation and also as a chance to get to know them better before deciding to be a patient. I usually pass on this offer because of its shear desperate sales technique. However, against my better judgement, I scheduled a free session with this man. He told me he would review any blood work results I brought with me to give example of how he could help me. I expected some basic information about increasing my vitamin D and eating less sugars to lower my blood glucose. I also expected him to try to sell me some of the supplements his clinic carries. Boy was I surprised – and not in a good way!

I show up for my free session and instead of the good chiropractor/nutritionist I met at the seminar, I meet a woman claiming to be a case manager. After quizzing her on her credentials, I find that she has none! She has five years experience working in that office as a case manager which I quickly came to realize was code for salesperson. After taking a thorough history of my symptoms, she explained the science-based nutrition program they use and then goes over the cost of said program. She spent a lot of time breaking down the costs for me with the various payment plans I could use. To do the full program would cost me $1,000 and insurance wouldn’t cover a single penny of it. Who wouldn’t jump on board for that? She was very thorough with the different payment plans and how I could spread the process out so I could raise money in between appointments.

I can’t express enough the disappointment I felt in not meeting with the chiropractor/nutritionist like promised and for having printed out all my blood work results over the past three years for nothing. I was so disheartened that I didn’t even have the energy to complain about the bait-and-switch they had pulled on me. I mean, what is the point? It won’t change how they treat me or any future potential patient, right? They obviously think this sales technique works. I am just so disappointed that healthcare clinics take advantage of sick people in this way. When you are sick, you can’t always think straight (can we say brain fog?). This technique blatantly takes advantage of us.

Fickle Memory for a Fickle Brain

My mind is a slippery slope. It has always been this way. The more emotional my memory, the slippier it is. Growing up in a dysfunctional family where emotions ran high and negative feelings were the norm has had a serious impact on my ability to remember just how bad things were back then. My brain has done a wonderfully effective job of blocking the negativity. I know things were bad; I know things weren’t right. But I’ll be damned if I know who, what, where, and why. I grasp onto to the stories family members have told me like a drowning women hangs onto a life preserver. I cling to the memories others have because without them I am at a loss. My childhood resembles the Dark Ages of Europe – empty space where we know life was lived but not how. On the one hand, I am blessed to only remember the happy times growing up. However, I can feel those empty spaces sucking away at me like a black hole. Just because I cannot remember first hand what happened doesn’t make the damage any less severe. I live with the repercussions of events I can’t remember. Is this healthier for me? Is it best to keep those things buried in my subconscious? Every time I try to pull those fragments of my childhood to the surface, my mental state suffers. My hold on sanity quivers until it threatens to snap. My new family, the one I married into, does not like it when this happens. And who can blame them? It is not a fun experience to watch a loved one grapple with deep-seeded pain, with their always fragile hold on normalcy.

On the flip side, my brain has compensated for this memory loss by sharpening my capacity to remember the non-emotional side of life – a.k.a., data. Raw data gleamed from books and lectures and seminars. It made school easier for me since I had all that extra space in my consciousness. I excelled at the acquisition of data. It was my thing. It made research (a passionate hobby of mine) that much easier to pursue. But now that chapter of my life is over. My illnesses have stolen yet another piece of my life from me. My memory has disintegrated before my very eyes. Brain fog (yes, it is a real, biological event) has stolen my ability to move data with ease from short-term storage to long-term storage. My ability to retrieve data from long-term storage has failed me too. It makes remembering appointments and to do’s difficult. If I don’t leave written reminders around me everywhere, I lose track of them. They slip into the gaping holes that exist in my brain. And just forget about my formerly large vocabulary and eerily precise ability to spell the most difficult of words. Those are climbing out the window one megabyte at a time. That tip-of-the-tongue feeling we all get occasionally is a daily experience for me. I know I know something, yet I can’t recall it. It isn’t dementia; it is the tortuous reality of brain fog.

Today’s rant was inspired by a missed lunch date an hour’s drive away from home with a sister I only see once per year because she lives in the south and I live in the north. It was a lunch date with my Babcie (grandmother in Polish) to celebrate her 95th birthday. I really don’t think normal people forget important dates like this one. It is no wonder that I feel like I am losing my mind…