Monday, Monday.

If you live in #Connecticut, and are on any kind of assistance, need to obtain healthcare, or deal with the Motor Vehicle Department, you already know, that a simple thing, like asking a question, may entail pressing endless numbers on menus, and sitting for hours on hold until you reach a human being. Is this just a case of a bloated system, or is it a plot to dissuade us from calling?

Who knows.

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The 5 Why’s.

If you came here expecting a non-stop stream of posts dedicated to chronic illness alone, I’m sorry. My life is about so much more than my illness, and because I don’t get out as much as I would like, it has become my journal, my place to vent, my sounding board, and a venue in which to air my concerns. It serves me, and hopefully others, by allowing us to communicate, discuss, learn, and share bits, and pieces of our lives. The good, the bad, and the downright ugly.

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We have failed our children.

There is no ONE solution to the problem of school shootings, because there is no ONE CAUSE.

I don’t know why it is so difficult for people to see what is right in front of them.Read More »

Pressed: “You’re Sick Because You Don’t Have Faith in Jesus!” (And Other Stupid Things… )

Source: “You’re Sick Because You Don’t Have Faith in Jesus!” (And Other Stupid Things People With Chronic Illness Hear on a Regular Basis)

Lyme Disease for Dummies.

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.Read More »

Pain Scale – 101

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. 😀

 

 

Lyme and ACA – The “Herx Rash”

Reblog, ACA, Here’s more:

kimmiecakeskickslyme

Acrodermatitis chronica atrophicans, (quite a mouthful huh?), or ACA, is a skin rash that is indicative of chronic Lyme. It was thought of to be an “only European” dermatological condition in relation to Lyme, but I will explain further exactly why it is very well in the United States. It can lead to widespread atrophy in the skin and can also cause many issues in the peripheral nervous system in more serious cases. ACA is the only form of Lyme in which no spontaneous remission occurs, and its pathology is not yet fully understood, according to one source.

 

Do you remember my feet? Dr J took a look at it and immediately knew what it was. ACA. It is also known as “the herx rash” or “herxheimer disease”, as it generally shows during or right after antibiotic treatment. In my case, as soon as I stopped antibiotics, this is…

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