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???
Hello everyone! I don’t want to bore you all with the continuing mini-drama of my wisdom tooth surgery aftermath, but I know many of you genuinely want to know how I’m doing, so I decided to do another update, this time I’ll just bullet-list what has been going on the past few days:
- Wednesday I went to the dentist in the morning, where he did indeed diagnose me with dry socket. He cleaned out the area and then put a clove oil soaked material in there. It didn’t hurt much when he did that, but the incredibly strong taste of the cloves made me horribly nauseated the rest of the day and made everything taste disgusting. It was so strong, my husband could smell the cloves across the room when I had my mouth shut!
- The clove stuff did eliminate most of the pain for a couple days, but this morning (Friday), that awful deep, throbbing ache has returned off and on. I do have more clove oil I bought, but the scent alone of it makes me so sick, I honestly don’t want to use it. Right now I am trying to get by taking the maximum amount of Ibuprofen and Tylenol, while occasionally using Ambesol to numb the area.
- I do still have opioids left, and it is extremely tempting to use them, but I took them so much the first few days after the surgery that my bowels have become clogged pipes 😦 I hope that isn’t TMI, but it is a common side effect of opioids, and when you already have IBS like I do, I think you are even more prone to stuff like that. I have been taking stool softeners like crazy, eating mushy prunes, and even broke out a little Exlax, but nothing yet.
- By the way, I forgot to mention that after I got home from the dentist on Wednesday, the blood clot on my other lower socket became dislodged and lost, so now I technically have TWO dry sockets. That was SO frustrating! If it was going to come out that day, why couldn’t it do so BEFORE I visited the dentist? Luckily, that side does seem to be a bit further along in healing, so it isn’t as painful overall as the other side, but it is still annoying.
- I have also been running a fever off and on, which seems a bit concerning considering the amount of Ibuprofen and Tylenol I am taking. You would think that would knock out any fever. I can tell right away when I am running a fever because I will get these intense sweats, and become even more nauseated and dizzy than I am already. Most of the last few days I have had to spend flat on my back most of the time due to that dizziness and nausea.
Well, that pretty much covers the last few days. I hope this is over soon. I appreciate all the concern and comments you guys have been leaving. It means a lot to me when I am feeling so poorly, even if I don’t feel well enough to write long comments back.
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.
Not long ago I had an infected wisdom tooth, so unfortunately, the surgery I have been putting off to get my wisdom teeth out is now more of a necessity. I am scared shitless, and I’m not even sure why.
I keep telling myself it is a minor surgery. Outpatient even. I’ll go, get them out, come home, and likely crash for a few days. Then hopefully it will all be behind me. The teeth are impacted, which makes the surgery more complex, but I will be put out for the operation, so I’m not sure why I am so panic-stricken at the idea of having to do this.
To make matters worse, the first appointment I could make to get it done isn’t until the end of August, so I have an entire month to keep freaking myself out. I keep trying to distract myself or think positive thoughts, but I feel such a sense of dread that I just can’t shake, and it is making me spiral into a depression as well.
I did the typical Aspie thing, and tried to make myself feel better by finding as much information as I could about the procedure to lessen the anxiety, but it hasn’t helped much. I could quote you stats of all the risk factors (and ways to prevent them), draw you a diagram of the procedure, or explain step by step what will be done, but it isn’t helping me to let it go.
Maybe this is my OCD coming out in full force (an inability to NOT fixate on something I wish I wasn’t thinking about at all), or maybe it is just the anxiety of the unknown, since I have never had surgery of any kind before or been put out for any kind of operation…but I wish my brain would just shut the hell up about it! I’m sure my poor husband would find that a relief too since he has to deal with his basket case wife for the next month 😦
Hello everyone! Lately I have implemented a few things into my life that I do feel are helping my depression and chronic pain symptoms, at least to an extent. No, I am not cured, and I still have some really bad days, but I feel like these small changes have been for the better, so I wanted to share:
- My psychiatrist has been trying to get me to take Omega-3 supplements for months now, and I finally decided to make sure I actually take them on a regular basis. I have been trying to take 2 supplement pills a day, one in the morning and one at night. It is supposed to be really good for depression and inflammation, so it is worth a try. I don’t like the taste or how huge the pills are to swallow, but I am making it work anyways.
- I have read multiple places that people with fibromyalgia are almost always lacking in Magnesium when tested, so I started taking a daily supplement of that as well. I do think it has lessened the severity of the body aches and cramps I experience on a daily basis. I also started taking a Vitamin C supplement in hopes it will help boost my immune system and prevent some of the chronic ear infections I have. I am trying to eat healthier, more natural foods too.
- I have started practicing mediation on a regular basis again. I try to take at least a few minutes most days to meditate, focus on positivity, and allow the spiritual side of myself to shine. My husband and I have also been attending a once-a-week meditation group when we are able to. Having that time to connect with others on their own spiritual paths has been helpful. They all seem to be very open-minded and open-hearted individuals, which are the kind of people I would like to have in my life more.
- Lately I have renewed my dedication to my own creative process and have felt inspired to create art again, something I have definitely been missing in my life. I simply feel better when I can create beautiful or unusual artwork, even if others don’t always understand it. Honestly, I create for ME. Yes, I sell my artwork and it fills my heart with joy to know that others appreciate and collect my efforts, but deep down, I create simply because I need to express myself.
- Make it a priority to spend time with nature. Whether it is going to a park, hiking through the woods, sitting on a swing outside your own front door, or bringing plants, animals (pets), crystals, and other natural objects into your home, reconnecting with nature always seems to be healing and comforting for myself. Maybe it will be so for you as well.
I am currently experiencing a real downturn mood-wise, but I’m going to try to write a life update post anyhow. I tried to write a blog post yesterday, but was simply to depressed to complete it. Today I’m just going to sum up a few things that went on this last week, so hopefully, I will get something done today.
- This past Wednesday, my husband and I tried out a new meditation group (new to us anyhow). I haven’t meditated in months at least, and it felt good to “get back in the saddle” so to say. Even though I don’t find that meditation is all that great at relieving my anxiety and depression symptoms overall, it does at least give me some perspective and allow me to step back a bit when I am feeling my worst and realize that it will pass if I just wait it out. That awareness is definitely beneficial to keeping myself on this earth when part of me wants to check out.
- My blog post about not being a social media doormat really became popular! I guess many others struggle with all the bullies and haters that tend to hang out on popular social media platforms. Glad to see I’m not alone in this experience.
- Today I am taking my bike and aerobics trampoline to sell them to a used sports equipment store. I have had to face the fact that I am not physically healthy enough to use them anymore and they are just taking up space. Hopefully someone else will get some use out of them. It is a bit depressing though to just give up.
- I am so disgusted by American politics right now. I am disgusted with Trump. I am disgusted with his blindly loyal followers. I am disgusted by those on the left that display blatant hypocrisy and pretend to be “the opposition”, but are just as sold out to big money and corporation interests. I am disgusted by all the pointless warfare my country perpetuates. I am disgusted by the news media that twists everything and often outright lies. I am disgusted by the lack of empathy many people have towards anyone who is different from them. I am disgusted by the fearmongering and scapegoating. I am disgusted that in the richest country on earth, Flint, MI still doesn’t have clean water, and much of Puerto Rico still doesn’t have power. I am disgusted that 40 million Americans don’t have health care and that 40% of the country can’t afford basic necessities like food and shelter. I am disgusted that conditions have deteriorated to the point that suicide rates have risen 30% since 1999. I am simply disgusted and feel powerless to help.
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.
What I thought was an IBS attack might actually be a bug or food poisoning or something else. This is the third day straight now I’ve been feeling sick to my stomach and having bowel issues, so it seems much longer than my typical IBS attacks in length. Due to that, I’ve had a rather lazy and boring weekend. I was intending to go to a mental health support group today but didn’t feel up to it and ended up actually sleeping through at least half of it since I didn’t get up until almost 2pm.
Sometimes when I talk about stuff like this it is almost embarrassing lol. I can’t help but imagine old men and women who talk about their daily bowel habits. I promise I’ll try to not make it a daily conversation, but it is part of living with chronic illness and it sucks if you have never experienced chronic digestive issues. Even if I do get an actual stomach bug or something like that, it seems that it takes much longer to get over it now that I have digestive issues anyhow.
One thing that sucked was that my husband went for a walk in the park without me because I was sick and he saw an owl! One of my favorite animals, and a rare one to sight in the daylight 😦 I guess at least he got a picture:
I obviously felt jealous since I dreamed last night that I found a mama owl and her babies in a tree. I guess I had to one-up him 🙂 Unfortunately, I pissed off the mama owl and she attacked me in the dream.
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.