Faith, Hope, and Complacency.

“Let me tell you something my friend. Hope is a dangerous thing. Hope can drive a man insane.“ – (Red) The Shawshank Redemption.

Hey everyone,  I guess it’s been awhile. To be honest, I just haven’t felt inspired enough, or angry enough to crank out a post. My apologies, but, as you know, such is the life of a person with a chronic illness…

Let’s just call it what it is: CHRONIC LYME DISEASE.

Yes, it does exist, and no matter what you are told, it’s NOT all in your head.

I was reminded of this, quite abruptly, while watching “The Bleeding Edge” on Netflix. Follow the link, and read the article. If you have any kind of man made parts in your body, brace yourself. Then, come back, and read my rant.

Continue reading “Faith, Hope, and Complacency.”

UGH…

That’s today’s post. Even on a day when good things happen, if I feel like shit, I.JUST.FEEL.LIKE.SHIT.

However, I do have this tiny dog, that makes me smile. ❤

Lyme Disease for Dummies.

You will hear, “At least it isn’t Cancer.”, “You don’t look sick.” and a plethora of other solecistic remarks that will annoy you to your core.
Do not give up.

When I was first diagnosed with Lyme Disease, I had no idea what it was, or what to expect. Sure, I had heard of it, but I had never met anyone who had it. Living in the Northeast, I was familiar with ticks, and had removed many from friends, family, and pets, but “Lyme Disease” was never discussed, or fretted about.

Soon after my diagnosis, I set out to learn more about Lyme, and in the process learned that not only was I not alone, I was in the company of millions of men, women, and children, all over the world who were suffering from this devastating disease. Continue reading “Lyme Disease for Dummies.”

Pain Scale – 101

Unfortunately, for those of us with chronic, widespread pain, our brains have learned to compensate for the pain. After living with it, we have learned how to function, and live our lives. This does not mean we are well, or better. It means we have adapted.

Last night, during my second go-round of binge-watching Grey’s Anatomy, I finally realized why the pain scale that doctors, and other healthcare workers use, especially in the ER, is something that should go the way of the dinosaurs.

During the episode I was watching, a 60-ish, yr old, man came into the hospital, with a headache he had suffered with for seven years. Every time he was asked what number, on the pain scale, best represented his pain, he said “8”. Over, and over again, an “8”. He then related, that over  last 7 years, he had been to 39 doctors, none of whom could find a cause for the pain, many had said he was crazy, a drug addict, or it was all in his head. During his discussion, with Meredith, he went on to say that his wife had died, and that because of the pain in his head, he was unable to “feel” the pain of her passing. He was numb.

I totally get it.

Here is a basic break down of the pain scale:

0  Pain free
1  Very minor annoyance-occasional minor twinges
2  Minor annoyance-occasional
3  Annoying enough to be distracting
4  Can be ignored if you are really involved in your work, but still distracting,
5  Can’t be ignored for more than 30 minutes.
6  Can’t be ignored for any length of time, but you can still go to work and participate in social activities.
7  Make it difficult to concentrate, interferes with sleep, you can still function with effort
8  Physical activity severely limited. You can read and converse with effort. Nausea and dizziness may occur.
9  Unable to speak, crying out or moaning uncontrollable- pain makes you pass out
10  Unconscious. Pain makes you pass out.

Although descriptions vary from scale to scale, this is what your doctor thinks when he asks you how bad your pain is. (How do I say 10, if I am unconscious?)

Unfortunately, for those of us with chronic, widespread pain, our brains have learned to compensate for the pain. After living with it, we have learned how to function, and live our lives. This does not mean we are well, or better. It means we have adapted. What may be a “7” for us, would most likely be a “9” for a healthy person. There have been a couple of times when I have answered the pain scale question, in a not so nice way:

“Do you want to know my pain scale or yours? Because, I’m at a 10 on your scale, and an 8 on mine.” 

Doctors don’t like it when you’re in pain, and being a smart ass. Just an FYI.

Yes, I can have a sense of humor, and still be in pain. It’s how I get through it. Deal with it.

Living in constant pain, at varying levels for years, can make a person change. Depending on how we deal with it, we can seem weak, and sad, or gruff, and cold-hearted. On any given day, we could even be both.

I am of the cold-hearted persuasion. Being in pain pisses me off. If you see me crying, back away very slowly, and do not make eye contact. (I can’t remember the last time I shed a tear, so not to worry, but still, you’ve been warned.)

No matter what the situation, every single human being is different, some of us have a higher pain tolerance than others. Many of us cannot take pain medications, of any kind. Some of us are allergic to certain things, such as penicillin, or nuts. Some of us have gene mutations that make us susceptible to certain diseases. Years ago, these differences were not taken into consideration. Everyone just took aspirin, drank fluids, and rested. If you were still sick, especially if you were a woman, you could be committed to an asylum, or be seen as being possessed by a demon, depending on your community, or faith. Yes, times have changed, but many of us are still being deemed crazy, or in the case of children, being removed from their families due to suspected abuse.

But I digress…

Bottom line is, that when we (Chronic pain sufferers) go to the doctor, or ER, and answer that ridiculous question, and say 8, or 9, remember that our pain scale is much different than the norms, and standards on which their lists were developed.

My pain scale is more like this now:

0-No pain
1-No Pain,
2-I have a headache.
3-I’m giving birth.
4- I have a migraine.
5- I have a toothache.
6- Don’t fucking touch me.
7- Screw taking a shower.
8- Don’t fucking talk to me.
9- In too much pain to go to the Dr. or ER.
10- Call the fucking paramedics.

So the guy on the show, said he was numb. Numbness is not an absence of pain. In many cases it is just an absence of emotion. We have internalized our physical pain, in order to live our lives in the most normal way possible.

If you don’t feel that your pain scale matches up to the one your doctor uses, then it is well within your rights to elaborate. Remember, he works for YOU. It is ok to say, “When I am sitting, I am at a 5, but when I move I am at a 7.” or any variation thereof. We are all different. Don’t let them lump you in the crazy category, or the drug seeker category.

Speak up. Be specific, and try not to be sarcastic, like me. 😀

 

 

More on Lyme, and Skin: “Acrodermatitis Chronica Atrophicans”

I learned about ACA a few months ago, but it was mentioned in an article I read this morning, so I took that as a hint to look further.

For well over three years now, I have had what the doctors like to call psoriasis. I have been referred to a dermatologist, who was useless, asked no pertinent questions, and said “…here…use this cream.”. Even my PCP has sent me home with creams. These topical treatments do not work on my skin issues.

These skin issues, first appeared on my right upper arm. They then also presented on my left forearm, and upper back, at my shoulders. They can come in the form of just a little blister like dot, or a patch of what looks, and feels like dry skin. Sometimes they itch, and sometimes they don’t. They never fully heal, and sometimes, leave scars that are ugly, and thick.

I learned about ACA a few months ago, but it was mentioned in an article I read this morning, so I took that as a hint to look further. This is the article: Pathogenesis, and Clinical Manifestations of Borrelia burgdorferi

  • The third stage is usually characterized by chronic arthritis or acrodermatitis chronica atrophicans (ACA), a diffuse skin rash, and may continue for years.

I have had a little post it, sitting on my desk for months, and I keep forgetting to pass it on to my doctor. A reminder, forgotten in a pile of paperwork. I won’t forget again.

Because ACA is primarily found in older individuals, and late stage infections of BB/Lyme Disease, it is often not connected initially, because of forgotten tick bites, improper diagnosis of Lyme, and/or disbelief in Chronic, or Late Stage Lyme Disease.

Progressive allodynia (exaggerated reaction to pain) is a characteristic symptom and thus may be a clue to the diagnosis of ACA. Patients commonly report spontaneous acral pain and paresthesia or dysesthesia or cognitive dysfunction.

Read more here:  Acrodermatitis Chronica Atrophicans Clinical Presentation

Unfortunately, in order to be diagnosed with ACA, you would need to, at some point be diagnosed with Lyme Disease, or be considered to have Chronic, Late Stage Lyme. To top it all off, and much to my disappointment, the treatment for this skin disorder, is basically the same as the treatment for Lyme, that many have been denied.

Antibiotics.

Approach Considerations

The choice of treatment for acrodermatitis chronica atrophicans (ACA) depends on the coexistence of other signs or symptoms of Lyme borreliosis. One should also take into account the results of serologic tests. If not treated early, ACA can be associated with joint manifestations and persistent finger deformities.

 

“Borrelia burgdorferi infection was diagnosed with enzyme-linked immunosorbent assay, indirect immunofluorescence assay (titer: 1:1,024), and Western blot. Histologic examination confirmed the diagnosis of acrodermatitis chronica atrophicans”. 

 

Pharmacologic Therapy

If extracutaneous Lyme borreliosis signs are absent and the level of specific antibodies is low, the authors usually recommend oral doxycycline or oral amoxicillin administered over a period of 3 weeks.  READ MORE

Because the initial cause seems to be a chronic infection of LB, and also because this infection is surrounded by controversy,  and is often denied due to inaccurate testing, it again, falls on the shoulders of Lyme Literate medical providers, and patients themselves to research, and present facts to the communities involved. It seems to me, that with knowledge of ACA, we can reverse diagnose to LB, and hopefully find a treatment that works for both.

Please pass along this info to anyone who needs it. I have also posted the reference links below.

References:

Note: The reader may notice, that some articles state, a rarity in the US, and the mention of several different strains of Borrelia. Keep this in mind. This is why many tests for Borrelia are inaccurate.

If you feel that you might have this condition, present facts, and reference material to your health care provider. We need to increase awareness.

More of my posts about skin issues, and lyme.

Yes, I’m a bad-ass.

Sometimes, I let things take up too much space in my head. I’ll hear a dialog, or see a comment on a post, and I will compile a list of responses, or comebacks. Many times, as is happening now, It congeals, and forms a blog post, that I hope others will read, and go “Yeah, I get it.”, “Me too!” (not that me-too.), or “Oh hell no!” LOL Continue reading “Yes, I’m a bad-ass.”

Post Exertional Malaise.

So…

Here we are creeping up on another holiday. I don’t know about you, but Thanksgiving kicked my ass. I didn’t even really do anything, but go to my daughters house, and eat. I was down for 3 days. During this time, I was reading blogs, and came across a term that I had never heard before. “Post Exertional Malaise”

Post Exertional Malaise is a symptom of ME/CFS, and many believe it should be added to the symptomology of Fibromyalgia, and Chronic Lyme Disease.

The standard description of Post Exertional Malaise, or PEM, is the inability to repeat a previous exertion, but this seems very vague to me. “Post-exertion”, is easy to define. It means “after exertion”. Exertion is physical or mental effort, or to apply force. “Malaise”, is defined as, “a general feeling of discomfort, illness, or uneasiness whose exact cause is difficult to identify.”. So, post exertional malaise, is what a person with chronic fatigue, or other illness may feel after any physical, or mental activity.

AHA!

Yep, that’s what I said. Three years of this illness, and not once, have I heard this term used. Anywhere. Ever.

Why?

That’s what I want to know. I can’t tell you how many times I have tried to describe this to a doctor, nurse, or physicians assistant, and was looked at as if I were speaking a foreign language. Not once, did someone say, “Oh! That’s Post Exertional Malaise!”

I was raised to think that doctors, or any healthcare professional, was taught, and knew everything. They could diagnose, and fix any ailment, and had the tools to make us well.

I guess not.

What happens to them? Do they just stop learning, or do they just not care?

I shouldn’t have to go into my doctor’s office with a bunch of research on my condition, only for him to poo-poo it, because he has the degree, and I don’t, or worse, accuse me of “Finding things on the internet to be afflicted with.”  Well Doc, I know where the CDC website is, and according to THEM, this is a real thing. 

Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM). People with ME/CFS often describe this experience as a “crash,” “relapse,” or “collapse.” It may take days, weeks, or longer to recover from a crash. Sometimes patients may be house-bound or even completely bed-bound during crashes. People with ME/CFS may not be able to predict what will cause a crash or how long it will last.

Although I am not a fan of the CDC’s position on some issues, I will use them to convey information that is pertinent. Especially to any doctor who thinks that I am talking out of my ass.

So I now have a term to use to describe what I’m feeling. It doesn’t do me much good, except for the fact that I know it’s real, and that others have felt the same way at times. Enough so, that it was given a name.

So now, when someone say’s you look tired, tell them: “I have post exertional malaise.”

Not only will this open up a totally different dialog, but it may spread the term around enough, so that we can all benefit, and stop feeling like freaks at the circus.

hmmm.