fibromyalgia

I’m a High-Strung Mess

| marandarussell

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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!

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Poetry: Waiting for the Doctor

| marandarussell

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Waiting for the Doctor
By: Maranda Russell

Perch on the edge
kick the drawers down below
lay back
wish I had a pillow
turn to the side
curl up in a ball
poke a hole
through the thick
tissue paper cover
read the poster
about acid reflux
for the 15th time
flip onto back again
count the ceiling tiles
12 in all
play with the blood pressure
thingy on the wall
stand up
run the water in the sink
look through the cabinets
hear doorknob start to turn
hop back onto examination table
try to look innocent.

Another Fun Visit to the ER

| marandarussell

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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.

Spiral of Anxiety and Fear

| marandarussell

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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.

Feeling Low After Lawyer Visit

| marandarussell

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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.

Why Doctors Frustrate Me – Trying to Get Testing Done

| marandarussell

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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???

Wisdom Teeth Surgery Aftermath…

| marandarussell

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Well, I got my wisdom teeth out yesterday and am actually feeling much better than expected. Sure, I am sore and it hurts to eat and brush, or open my mouth very wide, but honestly, this pain is NOTHING compared to the agony I often experience due to fibromyalgia, plantar fasciitis, and back/neck issues. I have been really tired, but I assume that is partly due to the aftereffects of the sedation.

After coming home yesterday, I spent the rest of the evening lying in bed, either napping, watching YouTube, tv, or reading. It was actually kind of an enjoyable, relaxing night. I didn’t quite look my best, but who does after surgery?:

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Luckily, I don’t remember any of the procedure at all. I remember the nurse asking me to move up the table before I got too groggy, and then that is the last thing I remember. I never even started feeling groggy, I was just OUT lol.

When I came to, I didn’t have any weird thoughts, conversations, or anything like that. I instantly knew where I was and what was going on. The first thing I asked (by text because I couldn’t speak with all the gauze in my mouth) was if they had broken my jaw during the surgery, which luckily, they didn’t have to do. I didn’t have any trouble getting up and walking out to the car, and only had a couple minutes of nausea on the way home, but nothing major. No throwing up or anything bad like that. I did take my opioid medication twice yesterday, but have been able to go without it so far today.

There was some post-op bleeding, but nothing too bad, although I did have to wash my pillow after following asleep and drooling blood all over it yesterday. One of my stitches already came loose, which has been annoying me, but I’m trying really hard to not pick at it. Overall, I’m so glad it is all over and very grateful that the recovery hasn’t been as bad as I feared so far!

In Case I am MIA Soon

| marandarussell

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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!

What is Your Great Work?

| marandarussell

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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:

  1. 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!
  2. 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.
  3. 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!