autoimmune

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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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!

How Accurate are Blood and Skin Allergy Tests?

| marandarussell

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Well, I’ve officially started allergy shots. Not long ago they conducted a skin allergy test on me to see if that might be contributing to my chronic ear/sinus/respiratory infections. They had already once run an allergy blood test on me (which showed I was only allergic to dogs), but they said the skin allergy test was more accurate and wanted to see what it read. So, I took a week off from all allergy medicines (which was awful in itself in many ways…and who knew that going off Zyrtec could cause withdrawal symptoms???), and then went for the allergy test.

They ended up poking me almost 100 times, checking various strengths of 27 different common allergens. By the time the lady had gotten to the third round of testing (around the 60th shot), I was really struggling to make it through. Fibromyalgia makes your pain response to anything worse anyhow, and getting stuck that many times can begin to feel like some kind of medieval torture device. By the end, my arms looked like cheese graters, with rows of holes all over them.

I waited a few minutes for the nurse to tally the results and found out I was allergic to 22 of the 27 things they tested for, which means 3 vials worth of shots that I’ll have to take for the next 3-5 years. While the ENT doctor does not think this alone is at the root of my chronic infections, she definitely thinks it could help.

The thing that frustrates me greatly is that I was tested for all this stuff by blood test a few years ago and it only showed ONE allergy! How in the world could the blood test be that inaccurate that it didn’t show one other allergen, when I am allergic to at least 21 other common allergens to the point that I need long-term treatment? I know for a fact many of the things I tested greatly allergic to in the skin test WERE also things they tested for in the blood test. In fact, for the skin test, I tested LESS allergic to dogs than many of the other allergens that didn’t show up at all in the blood test! How could the first test have been so inaccurate, and do physicians know exactly how inaccurate the test can be? If so, it sure would have been nice if someone would have told me back then. Maybe it could have helped prevent a few years’ worth of pain and suffering!

I’m curious, has anyone else had both tests and had such widely varying results? If so, did anyone ever explain to you why? I would sure like to know for myself.

When you are sick, but no one understands…living with CFS

| marandarussell
"Painful Descent", an expressionistic picture representing the downward spiral into chronic pain that many of us suffer.
“Painful Descent”, an expressionistic picture representing the downward spiral into chronic pain that many of us suffer.

Today’s subject is inspired both by my personal experiences with health issues and the experiences of others I know or have known that suffer from Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis). Although I myself have not been formally diagnosed with CFS, my doctor has ruled out many other autoimmune conditions and it is looking more and more likely that CFS may be the culprit. Of course, this post is one that many others who have an “invisible illness” will be able to identify with. Please remember that just because someone doesn’t look ill on the surface, doesn’t mean they aren’t suffering or fighting a tough battle.

So, what do you think of when you hear the words Chronic Fatigue Syndrome? Do you call it the “Yuppie Flu” like so many others have in the past? Do you think these people are lazy, faking it for attention or all hypochondriacs? I hope not, but if you do, maybe some facts might change your mind. For instance, did you know that fatigue is actually just one of many symptoms of CFS? In fact, you have to have multiple symptoms to even qualify for a CFS diagnosis. Here is a list of some of the symptoms of CFS that afflict most sufferers to one extent or another:

  • Incapacitating fatigue for no apparent reason
  • Extreme fatigue after exercise or exertion
  • Sleep problems
  • Pain in joints
  • Muscle aches and muscle weakness
  • Chronic infections that are hard to cure
  • Sore throat and ear pain
  • Severe headaches
  • Constantly swollen lymph nodes
  • Nausea and IBS symptoms
  • Constant flu-like symptoms
  • Mental fogginess
  • Chest pain
  • Numbness
  • New or worsening allergies
  • Sensitivity to noise, light, odors, foods, chemicals, medications, heat and cold
  • Irregular heartbeat
  • Hypotension, possibly fainting
  • Dizziness
  • Depression and anxiety

And those are just SOME of the symptoms! I personally have experienced all of the above symptoms, some worse than others, but I am still one of the lucky ones with CFS. I can still get out of bed without fainting and I can still walk and do some normal activities on good days. Some people with CFS can’t climb a flight of stairs to the second floor of their home and some sufferers almost never leave their bed or home (especially those who have severe hypotension and fainting).

Also, for those who think this illness is all in the head, did you know that there have been reported outbreaks of CFS in communities where hundreds of people came down with it all at once and suffered severely from it for at least 5 to 10 years? This research leads scientists to believe that at least some cases of CFS are actually caused by a virus that really messes up the immune system for some reason. Although some CFS sufferers do eventually feel better, only a small percentage will fully improve and never have symptoms again. There is also no tried and true treatment so far. Treatment options currently used include antidepressants, stimulants, exercise, nutrition plans and various other alternative approaches. Although some of these treatments do help some people, there are still many CFS sufferers who have found nothing that helps them. Perhaps that is why the suicide rate for those with CFS is high compared with many other physical ailments.

So, after reading all that, has your view of CFS and those who suffer from it changed at all?