Back Doctor and Pain Management Clinic Rant – Why So Insensitive?

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This is going to be a bit of a rant. Yesterday I received a letter from the orthopedic doctor and pain management clinic I was seeing for my upper back/neck pain. That letter turned my mood sour quickly. It said that I had been non-compliant with physical therapy and the spinal injections they had ordered, so they were kicking me out of the practice.

Why did it tick me off? Because the way they expressed it is totally not what we had discussed in person. First of all, I was not “non-compliant” with physical therapy. I tried it for several weeks and it WORSENED the pain rather than helping. It also caused widespread fibromyalgia and chronic fatigue syndrome flares throughout my body. This wasn’t the first time I had tried physical therapy, so I had been worried from the start, but they had promised they would accommodate my conditions, which they didn’t actually seem to do.

When I called the physical therapy office to explain that it was worsening my back pain and my fibromyalgia/cfs symptoms, they seemed understanding at the time. I was also having issues driving myself to therapy because when my back pain flares up, I can barely turn my head because of the neck pain. I asked the physical therapy office if I should perhaps try again in the summer when my husband could drive me, but the lady said that if the sessions were causing me that many problems, trying it again in the summer didn’t make much sense.

As for the spinal shots, the main reason I was fearful about going through with them is because they would not offer any kind of sedation. You see, I had been told how important it is for spinal injections that you be absolutely still during the process or you could cause damage to the spine. As an autistic person with severe sensory issues and intense over-sensitivity to any kind of sensory input (including pain), this worried me. I also have severe anxiety and that can sometimes make me shake and tremble involuntarily.

I had researched the shots and noticed that many other places offer sedation. I even talked to a few other people who had undergone the shots and had been sedated. I was not trying to be a pain or a drama queen, I was simply being cautious. Affording the shots was also a major issue at the time (since they required full payment up front), which I had explained to them.

In the end, I’m not upset that they were unable to further help me, I had already kind of figured that out. However, I am upset at the accusatory tone of the letter they sent me and the obvious insensitivity and lack of understanding for people who suffer from chronic pain/chronic illness and people who happen to have autism or other sensory processing difficulties. By the way, I will be sending them a letter back stating much of what I just said here. Hopefully they will learn something.

 

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Doctor Visit and Bipolar Mood Swings

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Today has been busy, although not all that fun. I had an appointment with my doctor today (my primary provider). I found out I have another ear infection, so I’m on yet another course of antibiotics. I think this is my third or fourth round since the new year started. So tired of this cycle.

We also talked a bit about my eating habits and how they might be negatively affecting my health. I really am working on changing that now, although after a few days of eating actual meals three times a day, my digestive issues have actually gotten worse. Last night was pretty bad as far as IBS symptoms go. I wonder if my body is wondering what the heck I am doing to it because it isn’t used to this, it is used to lots of sugar and little actual nutrition.

My mental state is ok today, but kind of blah. I’ve been on an emotional downswing a few days now and hope I don’t end up hitting the extreme lows. Right now I’m kind of in the moderate range, where I’m depressed enough that I don’t really want to do anything, but not so depressed that I’m crying all the time and having truly self destructive thoughts. In this mood, I have an apathetic “f- the world” kind of attitude. It is almost freeing in some sense to feel like you don’t care about anything, but it isn’t a good state of mind overall.

Back Pain Troubles

Not feeling very good today. A lot of it has to do with physical stuff. My back has been really messed up for a few days now. I’m not sure if it is the degenerative disc disease or the slipped disc causing the awful pain in my neck and back, but it is starting to take a toll on my mental health too. I find that even when you are doing fairly well mentally, that if you are in chronic pain, it is almost impossible to keep your mood high.

I did hear back from our health insurance that they approved my epidural shots for my slipped disc, but I have to pay hundreds up front for the deductible, so I’m not sure when I’ll be able to afford that. I’m also quite nervous about getting the shots anyhow. Having a needle stuck into my spine is scary.

Reasons Why I Would Commit Suicide

 

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Kind of a downer subject today, but it is something I feel like I need to say. Please note I am not in any immediate danger, nor am I planning to hurt myself in any way. This is simply a post about WHY I would likely commit suicide if I ever did. I am sharing this in the hope that others will come to care about these issues and learn to empathize with people like me.

If I were to ever commit suicide, there are two likely scenarios why, and both have a lot to do with our often selfish American culture/government and the view that many people have that everyone should just “fend for themselves”, regardless of their actual ability to do so. I honestly cannot see myself committing suicide simply because of depression, loneliness, bipolar, Asperger’s, fibromyalgia, chronic fatigue syndrome, or any of the myriad other struggles I face on a daily basis. I have survived those things for years and will likely continue to do so. However, if I did ever kill myself, here are the two likely culprits:

  • Lack of medical care. This is a real possibility. In our country, basic healthcare is not guaranteed to everyone like it is in most of the developed world. Were I unable to afford treatment for my conditions (especially the depression, anxiety, fibromyalgia, chronic fatigue syndrome, and other chronic pain/illness conditions I have) I can see myself being simply unable to bear the pain for extended periods of time with no relief in sight. If you have never had a pain condition that unbearable you are extremely lucky, if you have had conditions like that, you likely understand how lack of treatment, and especially adequate pain relief, could drive you over the edge.
  • An inability to provide for myself or take care of myself without any help. Due to the many conditions mentioned above (and the associated conditions I didn’t mention), it would be extremely hard for me to provide entirely for myself. If my husband were to die and I was unable to get help for basic survival, my greatest fear of becoming homeless and penniless might indeed come true. There is a great lack of resources for many of the conditions I have, especially for Asperger’s. High-functioning is a title I semi hate because it gives people the illusion we don’t really struggle as much as lower functioning autistics or that we should be able to “fit in” with the “real world” and be entirely self-sufficient. Many of us simply can’t. We try. We fail. We fail again. And again and again… We panic. We often have ptsd and enormous amounts of social anxiety. We feel like little kids trying to “play” at being an adult. We struggle with selective mutism. We have meltdowns. We are intellectually intelligent, but often severely lacking in common sense and street smarts. We suffer sensory issues that neurotypicals can’t even imagine dealing with. Combine all that with the bipolar, and is it any wonder that half the time I don’t know what the fuck I’m doing in this world?

*Art by Maranda Russell

So…6 Days in the Hospital: What I Learned

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Hello everyone! Well, yesterday I finally got to go home after spending 6 days in the hospital. Spending any time in the hospital isn’t the most pleasant way to spend time, so 6 days there certainly isn’t a party. However, some good did come out of the experience. For one thing, the original problem (horrible side affects and adverse reactions from prescription medicines) was solved….at least I hope so. I only say that I hope so because too often in the past I thought that a medication change was beneficial, only to develop an intolerance, allergy, or a Lollapalooza of side effects later.

Another good thing is that I really felt like I opened up and made some friends while hospitalized. After moping around the first day or two and even getting enraged because I couldn’t go home yet, I finally sucked it up and started coming out of my room to hang out with the other sickies. I met quite a few others, who, like me, were struggling with the results of pharmaceutical persuasion. Others were walking around slower than molasses, giving me the impression they were not currently inhabiting their physical form. Turns out I was wrong about at least one of those cases though. Who would have guessed that the guy who left me wondering if he was mildly or even moderately retarded was actually a highly educated and trained research engineer for the United States Air Force? Here I was thinking he was a few french fries short of a Happy Meal, when he is actually helping design and produce bombers.

Another positive? I found a doctor who seems almost a little TOO interested in Aspergians lol. As he declared himself (in similar words at least), “pretty much every great advancement in human history is due to autists”. I’m not sure about the actual historical accuracy of that statement, but can’t say there isn’t some kind of truth hiding in there. Apparently we neurologically diverse humanoids are pretty fascinating creatures to some out there.

A few other brief things I learned:

*Apparently you don’t insult Axl Rose. I don’t care though, the guy always seemed like an asshole (just ask his ex-bandmates).

*Having your own room can make all the difference when you are autistic and forced to live in a crazy sensory environment.

*It is foolish to pick up bugs when you don’t know what they are. The suckers might deliver a wallop of a sting!

*Sometimes the smallest act of kindness, like giving up something you want because someone else wants it even more, can make all the difference in the world to someone.

*Just saying that you like manga is enough for some people to love you!

*Nurses are often the true heroes of healthcare.