fibromyalgia

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???

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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!

Back Doctor and Pain Management Clinic Rant – Why So Insensitive?

| marandarussell

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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.

 

Helpful Tips for Fellow Depression & Chronic Pain Sufferers

| marandarussell

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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.

CFS Flare Up Causing Painful Sores?

| marandarussell

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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.

 

Vacations: A Harsh Reality of Chronic Illness

| marandarussell

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Over the weekend my husband and I took a short vacation to Louisville, KY to celebrate our 15th anniversary and spend some quality time together. I did have a good time, but I must admit that I dread and sometimes even regret vacations just as much as I look forward to them.

Why? Simple. Chronic Fatigue Syndrome. Vacationing when you have CFS sucks. Big time. Planning the vacation wears you out. Packing wears you out. The travel wears you out. Even though I don’t do the driving, I am still exhausted by the time we even get to our destination. Often, as soon as we get to our hotel I immediately have to lay down for at least a couple hours to recuperate, even if it is only a 2 or 3 hour drive as this one was.

The main excursion we planned was to the Louisville zoo. We had never been there before and both my husband and I love animals. Luckily, it wasn’t a huge zoo, but by the time we had toured about half of it, I was in really poor shape. I had to sit on each bench we came by and rest. I even had to make do with the floor a few times and just collapsed. I was nauseated, felt like passing out, developed a migraine-like headache, and felt extremely overheated, even though it wasn’t that hot out and I stayed hydrated. Heck, most of the buildings were even air conditioned. THIS is what living with CFS is like.

I didn’t get to see much of the rest of the zoo. I was too busy looking for places to rest and recuperate for the trek back to the car. My legs ached so badly and felt so weak that I feared they would give out on me multiple times. My entire body felt like I had been run over or slammed into by something big and heavy. Somehow I did make it back to the car (after resting many, many times on the way there), and then we went directly to our hotel so I could recuperate for the rest of the day. I didn’t even have the stamina to go out for dinner a few hours later, so we ate at the hotel.

I went to bed early, hoping I would feel better in the morning, which didn’t really happen. The next day we visited a cool indie bookstore I had wanted to go to, but I was almost too tired to even enjoy that. We went and found a place by the Ohio River to sit and watch barges pass by, which was peaceful and relaxing. During the drive times to our locations, I curled up with a pillow and laid my seat back to doze.

By the time we headed back for home, I was too exhausted to care about much of anything. When we arrived home, I went almost straight to bed, even though it was only 5pm. The next day (Labor Day), my hip and back were so sore (with a pinched nerve thrown in), that I spent most of the day laying in bed watching a Lake Placid marathon on the Syfy Channel. Any form of movement was excruciating.

All of this makes me wonder if vacations are really worth the trouble. It also makes me wonder if maybe sometime soon I will need to get a motorized chair to even survive simple outings like this. I hate to give in and do that, but my worsening symptoms make it an almost certain possibility eventually.

Missing the Old Me…

| marandarussell

Today I’m missing the old me. The me that existed before chronic pain, chronic illness, and worsening depression and anxiety robbed me of so many things.

The me that used to climb trees:

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The me that often used to hike up a trail and sit at the edge of a waterfall:

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The me that was up for outdoor adventures in any weather:

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The me that used to do silly things like go ghost hunting at night:

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I know it’s not my fault that things have changed, but I still miss that old me.