autoimmune

I Won My SSDI Case!!!

| marandarussell

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Here is what I wrote on my Facebook page today, I think it pretty much sums it all up:

Six long years, and I finally won my SSDI case! Fully favorable! Feel like crying and screaming. Been sick and in pain so long, sometimes I wanted to give up hope and die, but glad I hung in there.

All those people who doubted me or thought I was just being “lazy” or “dramatic” can kiss my ass. To all those who have showed love, empathy, and encouragement, thank you so much for helping to keep me alive and fighting.

My fellow bloggers here on WordPress definitely fall into the second category of supportive, encouraging people, so thank you all so much!!!

By the way, the decision was just made yesterday and my lawyer was the one who called and told me, so it will still be a little while before I get the back pay or monthly payments started, but I’m on my way!

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Bad TV Show Depiction of Ehlers Danlos

| marandarussell

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I love the tv show House. This medical drama, based around the character of a doctor with Sherlock Holmes mystery solving abilities is often smart, informational, and amusingly ridiculous. The main character (House) is often a total asshole, but he is so lovably grumpy, enormously flawed, and irresistibly outrageous that I can’t help but like him.

Last night I finally caught their episode that features an Ehlers Danlos patient, an episode I had been looking forward to seeing for a while. Unfortunately, I was really disappointed with the portrayal. First off, very little of the episode actually had anything to do with the woman with Ehlers Danlos. It focused more upon her husband for the first half at least.

When she was finally introduced into the storyline, she was presented as someone with a horrible mental illness (hoarding), which a casual viewer could easily think was due to her forthcoming Ehlers Danlos diagnosis. The last thing those of us with EDS need is to be confused with mental illness conditions even more.

Also, the only symptoms that are even discussed to be related to EDS in the show (and thus lead to the official diagnosis) are the fact that the woman’s heart responded badly to some medication and she had suffered several miscarriages. That was it. Yes, EDS can contribute to miscarriages, but it is far from one of the hallmark symptoms of many EDS sufferers. Nothing was mentioned about hypermobility, chronic pain, dislocations, joint issues, gastrointestinal issues, autoimmune issues, bruising/scarring, loose skin, etc.

Overall, a very disappointing experience as a viewer and EDS patient.

Fears of Becoming Home-Bound

| marandarussell

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I’m still struggling with bad neck pain. Yesterday it felt a little bit better, so I figured I would try to get out of the house for the first time in a while (other than ER visits). Unfortunately, once I got in the car, the vibrations from the car itself and the movement from driving kicked the pain back into high gear. I did at least make it to Wendy’s so my husband and I could get some dinner, but then it was straight back home because I was in too much pain to do anything else.

Honestly, after two weeks of these headaches and severe neck pain, I’m starting to worry this might be a long-term problem, just like my right shoulder blade and the arches of my feet. I’ve been incredibly depressed the last few days, partly because of the pain itself, partly because I can’t do much of anything, and lastly because I worry if my body continues to deteriorate at the rate it seems to be going, I may eventually become completely home-bound. I believe that all these chronic pain issues are mostly related to my Ehlers Danlos Syndrome, which sucks even more because there is no cure for connective tissue disorders 😦

I Want My Hot Water Back!

| marandarussell

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Our water heater sprung a big leak, so today I’ve been stuck at home waiting for it to get fixed. The hallway carpet was soaked through before we noticed the leak, so trying to dry that up has been a hassle as well. I really hope it doesn’t cause mold to grow where I can’t get to it 😦 That is the last thing my overly sensitive allergies need.

They had to drain the water heater before trying to fix it, so no hot water until it gets fixed and fills up again. It is funny how most days I put off taking a shower until late in the day, but when I can’t take a shower, it is ALL I want to do lol. I feel dirty, grimy, and disgusting, even though I know that is mostly in my head, since I took a bath yesterday.

I had to cancel my therapy appointment for today due to this annoying new development in home ownership, but that is ok, I really wasn’t feeling much like talking today anyhow. I don’t know if it is the stuff going on with the water heater, the rainy, bleak day outside, or just my ever-changing mood, but I’m feeling rather apathetic and blah today.

I want my hot water back!!! Waaahhhhhhh!!!!

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???

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!

Depressing Health Update

| marandarussell

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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.

Could Chronic Fatigue Syndrome Be Caused by Toxic Mold?

| marandarussell

Hello everyone! So today I’m sharing a book review vlog video I made yesterday. For anyone who has Chronic Fatigue Syndrome, Fibromyalgia, or similar chronic illness, or who has a special interest in those subjects, this book might be something you would want to check out! If you have already read the book, let me know your thoughts!