I found out recently that my Social Security Disability (SSDI) hearing has been set for February 2019. When I found this out, I contacted my attorney’s office to ask for a copy of my medical records since I honestly don’t even know what all is in them other than what my doctors have told me and what little is available on the online portals. I was rather shocked when they told me that they could give me the physical health records, but it is a HIPAA violation to allow me to see my complete mental health records.
To be honest, this bothered me. I’m not allowed to see some of my own mental health records? This doesn’t seem right to me. Maybe I could understand if I were violent or a real danger to others and they feared me getting pissed at what the doctors wrote and trying to harm them or something, but the closest I’ve ever come to violence is just having a meltdown and yelling at someone because I was overwhelmed (normally this has only happened at work places when I was put under a lot of pressure). Even yelling is pretty rare for me though. I am much more likely to just burst into tears, lock myself in the bathroom, or try to get away from the situation by finding another “safe” area where I can be alone.
Am I alone in being frustrated by the seemingly patronizing system hiding my own truth from me? Who else deserves to know my doctors’ real, honest perception of me more than myself? I’m not a child. I can handle knowing what my doctors really think of me and maybe knowing those things would help me in my own personal growth.
I want to begin this post by sharing a horrible dream I had last night. I was sitting in row G of a live outdoor show (my dreams are pretty specific sometimes), when someone behind me threw up all over my head. It was disgusting! I still remember the smell and feel of the vomit as it trickled down my face and hair. Ick! By the way, how do you “smell” things in a dream? I don’t know, but I sure did!
Ok, now that I got that off my chest, on to the main topic of this post. I am frustrated with doctors. Why? Because time and time again, I have had to fight to get testing that I feel is important, because many doctors tend to think I am just being a hypochondriac or overly anxious when I tell them I suspect a particular diagnosis.
However, time and time again, I have been proven RIGHT when I finally got the testing. C Diff, MRSA, medication allergies, asthma, CFS, fibromyalgia, costochondritis, pancreatitis, Aspergers, bipolar…all of these are conditions I highly suspected long before I actually got diagnosed, and yet, I had to fight to even get them checked out because doctors thought I was just being paranoid.
The most recent testing I am fighting for is Ehlers Danlos (EDS). I meet the major and most of the minor criteria for the condition, but have been fighting to even get a referral for testing. EDS is often comorbid with high-functioning autism, so that is what first made me interested in the condition. I am positive I score at least 6 or 7 out of 9 on the Beighton Score (higher on the Brighton Score).
I guess I can sum up this post in one sentence: Why is it so damn hard to get a simple test done???
Hi everyone! I wanted to write a short post just to say that I might be MIA this weekend (and maybe longer, who knows?) because I am having wisdom teeth surgery tomorrow. The teeth are impacted and oddly placed, so unfortunately, it isn’t expected to be a simple tooth-pulling operation (which definitely shows in how much I have to pay for it lol). Thank goodness they put you out for it!
I’m sure I will be fine, but as those of you with chronic illness/pain know, nothing is ever easy when you have autoimmune issues and inflammatory conditions that crop up every time your body is put under any kind of stress. I am hoping it won’t lead to a major flareup of my fibromyalgia or CFS, but I am preparing for the worst just in case.
I hope you guys will keep me in your thoughts and prayers (if you do that kind of thing). I could definitely use some positive energy sent my way!
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.
On Facebook I shared a post about some tax changes that are being made to churches and non-profit institutions. The debate that started, made me think about my own experience working for a non-profit organization and I wanted to share a little bit of that here. For around 6 months or so, I worked for a non-profit religious hospital system. My job was to be one of the people in the emergency department who collected patient information (especially insurance information) and processed payments.
From the beginning, it was drilled into us that it was about the money. We were hounded to make sure we collected certain percentages of money from patients while they were still there in the building, whether they could afford it or not. We were encouraged to apply pressure to them to pay at least a percentage that day, regardless of their personal circumstances. Although patients could legally ask to be billed later, we were told to NEVER tell them that, and only offer that option if they brought it up first.
We were told bluntly that the hospital had to make sure to look like they were doing enough “public outreach” to keep their non-profit tax status, so when they did run public assistance programs we were told to advertise them when talking to patients. It became clear that they didn’t necessarily do programs for the poor because they CARED about them, it was so they could continue to get the tax breaks and other non-profit advantages. I heard so much negative talk there about Medicaid patients and the poor. I was also told flat out that the company was purposefully looking into opening more locations in areas where the people were more likely to pay, and closing locations where the populations were poorer.
One huge issue I had was that even when someone was brought to the ER and died, we were pressured to try to get money from their grieving relatives. More than once, those in charge actually chose not to tell family members that their loved one had passed away until AFTER we collected insurance information and copays/deductible payments. They would send us in, and we would know the family’s loved one was gone, but we were told to lie and pretend we knew nothing. This killed me to have to do. One time a lady begged me for information on her husband who was dead, and I couldn’t tell her anything. I also struggled to go up to a mother whose child has just tried to commit suicide and ask her for money. I felt like scum.
In the end, I couldn’t keep this job due to my own health issues, but I couldn’t have kept doing it with a clear conscience either.
I went to the doctor today because my ear is still killing me and I’ve been running a fever for several days. Turns out I have another middle ear infection…this has to be about the sixth one in six months. Boy, am I getting tired of this. Not much I can do either, since I have tried many “alternative medicine” cures for ear and sinus infections and have went the whole ENT and allergy specialist route, only to find that nothing really works. In the end, I feel like it is just my own immune system working against me.
The doctor also said that she suspects the mouth sores I was dealing with might have been related to Coxsackie Virus (or Hand, Foot, and Mouth Disease). Adults don’t catch that illness nearly as often as kids do, but it can happen, and with my autoimmune issues, I guess it wouldn’t surprise me to find out I did get it.
So, I am on ANOTHER course of antibiotics. Something that depresses me to no end because I fear with all the antibiotics I have had to take lately that I may end up developing C Diff again, which caused me to be hospitalized for almost a week a few years ago. Needless to say, I am not in a good place physically or mentally and am just tired of it all. This chronic illness shit sucks.
The last week has been rather rough. Healthwise, I seem to be having some immune system issues. For some reason, I have gotten sores all over my gums and strangely, under my tongue. They aren’t like regular canker sores, they are more like little painful little red balls and swollen, ulcerated patches. I’m not sure exactly what they are, although while looking around online, I did find forums full of people with CFS and fibromyalgia who have experienced similar outbreaks, so I am guessing maybe it is related to that.
Unfortunately, the sores that are near the back of my jaw are causing an immense amount of ear pain, to the point that it feels like an ear infection. I was also running a low grade fever last night, which makes me think it is some kind of virus or infection causing the sores. I am taking some antivirals suggested by the doctor, but they don’t seem to be helping at all and are only serving to make me nauseated on top of everything else.
Today I was supposed to go to a birthday picnic for one of my husband’s coworkers, but I simply didn’t feel up to it. I feel bad for letting him down because I know he really wanted me to go so that I could get to know his friends better, but socializing is the absolute last thing I feel like doing right now.
All of this has me rather depressed and feeling lethargic. It feels like ever since I overdid it on our mini vacation to Kentucky, my health has taken a nosedive and is struggling to recover. That is what many people don’t understand about CFS, that once you trigger a relapse, it can take weeks to get back to “normal”…and our “normal” is far below average to start with! Chronic pain and chronic illness are no joke and make for a rough life sometimes.
Today I was supposed to have therapy at 11am, but my therapist got confused and thought we had scheduled for 1pm, so I ended up waiting for a few minutes at the therapy office and then just going home. Usually something like that happening would really upset me, but today I actually took it pretty well. Maybe because I wasn’t feeling good physically anyhow, so the desire to go home and go back to bed was strong. I did get back to sleep, but my therapist calling me at 1pm to ask where I was woke me up again 😦 I’m glad she called though, because I was wondering what the heck happened when she didn’t show up this morning.
I’m still feeling bad, I have a stubborn headache that won’t go away and my IBS has been acting up since last night. I’m wondering why all my neighbors have to wait to mow their lawns and get out their weed-wackers until I have a severely pounding head? It is almost like they plan it…
I’m bummed about the way I’m feeling because I really wanted to go over to the Build a Bear store today, but not sure I’ll make it. I only ate a little bit of tuna and a few crackers for lunch, but I’m not sure if that was a good idea or not… I’m hoping tomorrow I’ll have better things to report.
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.