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???
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.
I figured I would do a short follow up post about my psychiatrist visit a couple days ago. It went ok I guess. Instead of switching me off the Prozac, he decided to try upping it one more time to see if that would do the trick, but promised me that if that didn’t make me feel better we would try something new next time. He did mention Wellbutrin as a possibility, which I have never taken. If anyone has experience with that drug, please let me know your thoughts on it!
The first few minutes of our visit, we talked about Netflix and the shows I have been binge watching recently (Black Mirror, Atypical, Stranger Things, American Horror Story). Then he asked how therapy was going, and I felt like at that time I needed to admit how bad my depression had gotten and that my therapist was actually worried about how low I was feeling.
My psychiatrist asked me why I didn’t bring that up immediately when our session started and he kind of jumped to the conclusion that I was trying to be “a good patient and not complain”, but I had to explain to him that his assumption was wrong. I wasn’t trying to make things easier for him, it is just simply hard for me to talk to anyone in person about how bad I really feel when at my lowest. It makes me feel vulnerable and exposed, and I hate that.
I know that last sentence may seem weird, considering the fact that I am so open and bluntly honest in my blog writing about how low and horrible I feel sometimes, but it is just easier for some reason to write that all out to a blank page and post it to the ether of the internet. Being in front of a living, breathing human, it is so much harder to peel the layers away and let my real self be seen.
I’ve been feeling artistic and creative again lately, which is an awesome feeling. Honestly, when I don’t feel creative at all, I don’t feel like myself. That in itself can add to my depression and anxiety. Sometimes I wonder if some of the meds I take don’t affect my creative output. It is a common belief among many artists that antidepressants and other mental health medications can dim or even entirely restrict the creative impulse. I’m not sure if that is entirely true, but I do feel there is at least a grain of truth in it. Perhaps, because anything that numbs you or tries to restrict emotions (even bad ones) can’t help but dull the creative spirit, which relies so much on the ability to feel deeply and be sensitive.
Anyhow, last night I made a couple new drawings and thought I would share them! There’s no particular theme with these two, I just went with whatever came out.
If you like my artwork, check out my Ebay store to see what I have for sale!
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 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.
I decided to start doing some bipolar mood charting. I’ve seen others talk about how it helped them to figure out patterns in their mood swings and behaviors, so figured it couldn’t hurt to give it a try. To find a bipolar mood chart, I just googled it and checked out several options that came up. I ended up going with this chart.
I’ve only been tracking myself on it for four days now, but I’ve already noticed a few small things. For one, I’m clearly more on the low side (which makes sense being Bipolar type 2), and even when I do chart on the “high mood” side, I often chart on the “low mood” side for the same day. So I am predicting that most of my “high mood” days are actually mixed days. We’ll have to see if that stays consistent the longer I chart myself.
I also noticed rather interestingly, that so far, when my anxiety is high, my irritability tends to be lower, and vice versa. Are anxiety and irritability two sides of the same coin just expressed differently? I don’t know, but thought it was interesting.
Lastly, this is something I already kind of knew, but seeing it in writing really drives the point home…I sleep A LOT. On average, about 11-12 hours a day. I sleep HALF the day away! This has pretty much been the case since I started taking Seroquel, so I wonder if that may be responsible.
I woke up today feeling like I just needed to get out, so went to do a bit of shopping, nothing too exciting as you can see here, but hey, sometimes even routine errands can help get our minds off heavy stuff.
First I stopped at Walmart. As you can see, I am still feeding my Coca Cola addiction. The cough drops are for the hubby who woke up feeling crappy today, and the Carmex is because I’m having some lip pimple or cold sore issues that are driving me crazy. I rarely EVER buy makeup. Lip balm and this kind of Covergirl foundation powder are about all I ever do. Honestly, it isn’t even necessarily an aversion to makeup, but just that #1, I never really learned to do my own makeup, and #2, makeup is expensive and I would rather buy more fun things normally!
I also went to Goodwill, where I found a sweatshirt that was super comfy and almost brand new. Ironically enough, the sweatshirt I bought at Goodwill was almost the exact same price as this brand new t-shirt I bought at Walmart. It seems a little ridiculous to me that Goodwill prices are now about as high as Walmart prices! I know sweatshirts cost more than t-shirts anyhow, but still…
I think the best part of getting out of the house though is just cruising in the car, with the windows down, and cranking up the volume on some of my favorite albums. That might be one of the most therapeutic treatments for depression.
Maybe I should have suspected yesterday that when I was feeling so good, it might be me slipping into hypomania a bit. As the evening wore on, I could tell that the good mood was going a little bit off the rails. I started feeling extremely antsy and a bit hyper. I may have started driving my husband a bit nuts by constantly asking him silly questions and yelling across the house to him.
Suddenly, I found myself with too many thoughts and plans in my head to concentrate on any of them. I felt pressure to get lots of stuff done, even though there was really no need to do them all right now. By the time bedtime rolled around, I really didn’t want to take my medicine (Seroquel) because I knew it would make me go to sleep and I didn’t feel like sleeping, I felt like staying up all night to clean out and reorganize the spare bedroom.
Fortunately, I listened to the little voice of warning in my head that told me that if I didn’t take the medicine, it might feel good to stay up all night right now, but that this could easily spin out of control again like it has in the past when I have gone days without sleep and even ended up hospitalized. So I DID take the medicine and went to sleep. However, even today I can feel the traces of hypomania hanging around, trying to convince me to just throw caution to the wind and enjoy the high.