Man, I feel bad. About 4-5 days ago at least, I started having issues with a sore throat and stuffy nose. I figured maybe it was a little cold, or even allergies. I started having worsening asthma symptoms and chest pain too, but figured that was the heat (it always triggers my asthma some).
Today, I woke up feeling like I couldn’t move or get out of bed. The body aches and fatigue are unreal. Worse even than some of my CFS flareups. Everything seems slowed down, and my brain is super foggy. I’ve also had headache, itching all over (and what looks like it might be hives), nausea, and a fever off and on.
I’m not sure if it is covid, but man I feel bad. I am in contact with my doctor about it and will probably end up getting tested. Our county is a hotspot here in Ohio, so it easily could be Covid.
Now, I’m going back to bed (even though I slept more than 12 hours). Goodnight.
I didn’t post the last couple days because I’ve been sick. At first I thought I was having an adverse reaction to hemp seed oil, which I decided to try for the first time Friday. I was hoping it would help my chronic pain issues, but within a few hours of taking it, I developed a horrible headache (almost migraine level) and then became really nauseated and felt like throwing up all night.
However, yesterday I made sure not to take the oil again and I still had a rough day with nausea and other stomach issues, so I’m not sure if an adverse reaction could last that long or if maybe I just had a stomach bug or something. I hope it wasn’t the hemp seed oil, because if that makes me sick, I would worry that medical marijuana might do the same, which I am still hoping to try if I can get my Ohio prescription card.
The really sucky thing about Ohio’s medical marijuana program is that they only approve certain doctors to prescribe it and it sounds like you have to go through certain organizations to get approved….organizations that do NOT take any kind of insurance and charge a couple hundred bucks just for your first visit. Almost seems like a scam in some ways. I’m doubting you can use insurance on the prescriptions themselves with a system like that, but I’m not sure. So honestly, I don’t know if I can afford medical marijuana 😦
As for my possible adverse reaction, I think it worries me even more because my mom always told me that she could never smoke weed because it gave her migraines and made her physically ill. I was hoping I didn’t inherit whatever it is that caused that reaction in her, but now I’m worried maybe I did. It would suck to spend all that money on a medical marijuana card and then find out it made me feel worse.
I’m feeling rough tonight, maybe because last night I went to a little Christmas-themed park and got really cold, which often tends to aggravate my CFS, Fibromyalgia, and Ehlers Danlos joint issues. I had a great time though and wanted to share a few fun pics of the night.
Here is me getting cozy with the Gingerbread Man:
Who doesn’t love a big fire pit when it’s cold out?
Here is some crazy guy climbing the giant Christmas tree (I’m guessing he wasn’t supposed to be doing that):
I am currently a high-strung mess. As my SSDI hearing looms nearer and nearer, I find myself obsessing way too much over it and almost panicking about the fact that I feel powerless over what will happen in the end. I am trying to do absolutely everything I can think of to prepare for it and make sure we have good medical documentation especially, but that in itself is stressing me out because it means having to be assertive and ask for things from my physicians which I despise having to do. I HATE having to ask ANYONE for ANYTHING. It is just the way I am, but sometimes you have to do the things you hate…
I do not do well when I feel like I am not in control of a situation. My anxiety can’t handle the uncertainty and the endless waiting. I would almost rather deal with the worst case scenario immediately rather than be in limbo for months waiting for someone else to decide my fate. On top of that, I feel like I am annoying those around me (lawyer office employees, doctors, my poor husband) because of my intense anxiety state. I talked to a paralegal today and she told me to take a deep breath and relax lol. If only I could! I can do the deep breath, but the relaxing part just ain’t kicking in.
The heightened stress is taking a physical toll too, as it always does. My upper back/shoulder/neck area is flaring again to the point that I am regularly rolling on Lidocaine and had to take some Tramadol. The pain is so bad I can’t do any household tasks, which makes me feel bad too. Even typing this is painful and requires frequent breaks.
Now I feel like my whining is probably annoying all of you too lol. Sorry if that is the case, but I just needed to vent!
I spent yesterday in the ER. Always lots of fun. I was rather freaked out because I literally couldn’t swallow at times and felt like I was going to choke to death or something. I also was having chest pains, trouble breathing, and feeling like I was going to pass out. Now I get to go back to the GI doctor because they think there are probably issues with damage to my esophagus.
Still not feeling much better today. They put me on some meds that are supposed to protect and hopefully help repair damage done to the esophagus, but no relief yet. I still struggle to swallow, keep coughing, and feel like there is something permanently stuck in my throat. Eating and drinking is no fun, even the smoothie I tried to drink earlier struggled to go down. My chest, especially around my breastbone feels like there is an elephant sitting on it. Man, this sucks.
I am feeling so incredibly stressed about my upcoming SSDI hearing and everything related to it. It has become an obsessive thought pattern that I can’t get out of. This always happens when something I am super nervous or scared about is looming on the horizon. My mind is a circular track of “what ifs”, incessant thoughts about things I need to do, fears that I will make a mistake and blow my last chance for SSDI benefits, and fear that if I fail and am denied again, it will once again send me into a suicidal spiral of feeling worthless, disbelieved, and like I will forever be a burden to society and those I love.
Tomorrow I have to ask my psychologist to fill out a RFC (Residual Functional Capacity) form for the hearing. I think she will be open to it and want to help, but I am still anxious about asking and scared of rejection. I have to ask my primary care physician to fill out a similar form when I see her next week, and am even more nervous about that because I know she is often rushed and I don’t want to be an inconvenience or annoy anyone by making demands.
As you can see, I struggle greatly with asking anyone to do anything for me. I’m not sure if it is just my lousy self-esteem or what, but I always feel like anything I need is an imposition on someone else. Maybe the result of being raised by a narcissistic parent? Growing up, I often was made to feel like anything I needed (emotionally or physically) was selfish and inconvenient to those around me. To this day, I struggle with feeling like I am actually entitled to anything – even basic human respect.
I think my fear of being disbelieved about my disabilities also stems from the fact that when I first started getting really sick, even my own husband and family didn’t believe me. My husband came around first, when he saw how much I truly was suffering every day and how even the things I loved most were being ripped away from me. He has even apologized for his initial doubts. Some of my family (including in-laws) still make me feel invalidated, but I’ve come to the conclusion I can’t do much about that.
Today has been a rough day 😦 I had to get up early to go to an appointment with my lawyer to talk about my upcoming SSDI hearing in February. I woke up feeling exhausted, achy, and sick to begin with, my stomach and digestive system freaking out from the anxiety of the change in routine as they always do.
The meeting went ok, I suppose. The lawyer seems really nice and genuine, but the whole thing depressed me. For one thing, it isn’t easy to have everything that is wrong with you physically and mentally just laid out on the table for everyone to see. It isn’t fun facing the reality of my own limitations and self-perceived flaws. I know I can’t help having mental and physical issues, but it SUCKS to have to dwell on them and think about them more than I already do normally.
The lawyer wants me to try to get my doctors to fill out some forms to take to the hearing and that gives me high anxiety. I hate having to ask anyone to do anything, it is just the way I am. I have a deep fear of rejection. What if they say “no” when I ask them to fill out the forms? Then I will feel even lower than I already do. I know my doctors are caring people who try to help me and they will probably be more than willing to help, but my brain just can’t shut off the “what ifs”.
I came home from the lawyer visit, cried for a little bit, then crashed for a few hours in bed. I still feel like absolute crud, but am trying to get back into my normal routine. I am desperately in need of some self-love and comfort right now, but that isn’t easy for me to do.
Recently I was reading a book about glamour magic. I read a lot of books about paganism and mystical spiritual paths, because even though I consider myself an agnostic, I also believe there are many, many things we don’t understand and I enjoy delving into the mysteries and deeper meanings found in spirituality and mythology.
Overall, the book was a bit of a letdown, it seemed fairly shallow in some ways, but I guess I should have guessed that since glamour magic itself is generally about surface level changes. However, there was one meditative exercise in the book that I did find meaningful. This part of the book emphasized the importance of figuring out what your great work will be.
As the book went on to explain, in order to get anywhere in life, you have to know what you are aiming for. You have to know what is most important to you in terms of achievement and meaning. You have to figure out where your energy, passion, and hard work should be directed. So, I meditated on this subject for a while and here are the three things I came up with that I currently would consider my own “great work” in this life:
My writing/blog. Guess what? You guys are all a BIG part of my great work! I write because my soul cries out to share my experiences, feelings, hopes, and dreams. Having people who actually want to read about those things is truly a magical gift in itself!
My art. I often feel insecure in my artistic abilities. I feel like there are so many artists out there that are far more talented and definitely better trained than myself, but I LOVE art and sometimes I genuinely love the stuff I make. My art may not be top of the line, but I do think many of my creations are unique artworks that only I could make.
Advocating for others like me. This kind of ties into #1 and #2, since I often use my art and my writing to advocate for others who have autism, mental illness, or chronic pain/illness. People like me are often marginalized, ignored, looked down upon, and mistreated. I want to help stop that. I want to help the world to become a kinder, more empathetic place for those who struggle.
Now that I have shared my own great works in life, why don’t you spend a little time figuring out your own? You can pick just one, or you can have several like I did. Think deeply about it and question your purpose in life. If you would like to share what you come up with in the comments on this post, I would love to hear it!
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.