Here I go again.

Infection.

I keep an infection because I have Fibromyalgia.

Fibromyalgia is known for all over pain, but really it's under the medical umbrella "autoimmune disease".

Fibro means I catch everything.

Everything!

And nothing ever goes away.

After the last round of antibiotics the doctor said I can't just keep taking antibiotics.

It was just my second round in the past few months, which is good for me.

But the antibiotics just tamp down the infection and I feel pretty good (not totally well, but pretty good) for a few days then it starts back.

My mouth burns like I had scalding soup,
my ear hurts,
my sinuses feel full,
my body has sores just show up (usually on my legs)
tiny blisters on my body and arms,
my kidneys hurt,
I have a UTI,
and
I feel tired and tingly.

I wish I could get enough antibiotics to end the infection completely.

Why not do that so it wont just grow back?

Wouldn't a total eradication make it harder to get sick again?!

I get that they don't want me to become immune to the antibiotics, but I say get rid of the infection entirely and I wont need more antibiotics.

Right?

Why can't I just be well?!

I wake up with two feelings every morning: Pain and disappointment.

Pain from my fibro & degenerative disc disease and so on and also disappointment because I woke up.

Okay, the disappointment is only the mornings I am not dreaming of my pain. Those mornings I just wake up crying in pain.

No, I'm talking about my first thoughts/feelings every morning is being disappointed that I wake up. Disappointed that I am in pain. Disappointed that I am STILL in pain. Disappointed that I have another entire day to face feeling constant pain. Some days I can push this aside as I try to get out of bed without help. Some days it lasts hours or all day.

I walk this tightrope of life over a chasm of depression and pain is just one of the things I am juggling along the way.

It's not *just* that I have pain. It's that I *STILL* have pain. That the pain that wore me down all day the day before is still there. That wore me down all week, all month, all year, the last two decades is *STILL* there.

It invades my dreams.It's in my thoughts before I am conscious. It's there before I realize who I am or where I am. It's there before I decided I must get up and go to the bathroom. It's there before I know what day of the week it is.

It is there before every movement of my day. Limiting me. Restricting me. Drawing me inward. Pulling me down.

It is my last thoughts as I drift off to sleep. Because of pain, I have to sleep a certain way.It's because of pain some nights I can't sleep. It's because of pain some nights I can't even lay down and rest.

Pain is there. Always.

This morning I woke up whining and groaning in pain. It's raining. Rain always causes pain. Plus last night my medications got hung in my throat and I threw them up. So it's like missing a does of meds and rain-pain. I hurt!
I just want to go back to bed and hide under the covers, but the pain would find me there even if I did.

I hate fibro.

I hate being tired all the time.

I hate not being able to live my life.

I feel useless.

I feel helpless.

I feel like a burden.

This is not how I pictured my life.

Protecting Boo

Let me say that you probably don’t understand the nature of the relationship between service dogs and their person. He’s not “just a dog” or even “a member of the family”. He is me. He is just as much a part of me as my arms, legs or eyes. He is just as much a priority to me as I am to me.  

He is on the “short list” of people I love and trust most. Mom, my daughter Kathy, & my grandson Ethan (and my son-in-law Ken) are the others on that list. Just consider this list as my immediate family. Yes, I called Boo “people”. That’s because he’s as important as I am. He is part of me!

If you didn’t make this list and you are mad “a dog” made it and you didn’t you can get over it or die with it, because it ain’t changing. It doesn’t mean I don’t like you, but you are not as important to my survival or my quality of life as this list of people is to me.

(And don’t pretend to be offended, because I’m sure I didn’t make your short list either.)

Like I said, he’s a part of me so don’t expect me to just stand by while you threaten or hurt him. It’s not a joke. It’s not funny. It’s not acceptable at all. You are threatening ME when you threaten him and I will defend him as if I were defending myself, mom, Kathy, Ethan or Ken.

I won’t stand for it. I can defend him as if I’m defending myself, and you can go to jail, pay a fine and be sued.

“Georgia too has a mandatory jail term:

c) Any person who has received notice that his or her behavior is interfering with the use of an assistance dog who continues to knowingly and intentionally harass an assistance dog, knowing the dog to be an assistance dog, shall be guilty of a misdemeanor and, upon conviction thereof, shall be punished by imprisonment for not less than 90 days or a fine not to exceed $500.00, or both, provided that any person who is convicted of a second or subsequent violation of this subsection shall be punished as for a misdemeanor of a high and aggravated nature.

GA ST § 16-11-107.1 .   This mandatory jail term also applies if a person knowingly allows his or her dog to harass an assistance animal. “

Because of the pain, I have anxiety. The brain sees pain and anxiety as the same thing. It is filtered the same way. Don't believe me? Go ahead and stub your toe really hard. Okay, feel that "drop" in your stomach and the "rush" of adrenal sensation? Now feel the tingle shakiness?

Okay, now wait a few minutes. Do you feel better? Good. But imagine that initial feeling all the time, day and night, day in and day out, all week, all month, all year. For decades. I doubt you can, but I can because I have lived that.

That feeling then I was in class, when I was talking to friends, when I had to give a report in school, when I was asked to read in Sunday School class, when I tried to sleep, when I was pregnant, when I had a toddler and was pregnant again. When I drove. When I worked, when I made decissions. When I talked to my children. Every moment of every day and get this, no one knew!

I mean, everyone knew here was something "wrong" with me, but no one including me knew what exactly that was. No one even knew generally what it was. I was told I had "depression without depressive thoughts", that I was "bipolar", that I was just "having one of her [my] fits".

I was told to "quit acting" and I couldn't understand why people didn't understand me. My "emotions ran high" or I was an "odd bird". I was "high strung" and 'nervous". I was the person no one wanted around.

I didn't understand what I was doing wrong. I tried so hard to be a good friend, daughter, wife, mother ect. but still, no one wanted me around.

The pain was so consistent that I thought it was normal for everyone to feel like I did. I couldn't imagine anyone not hurting somewhere or everywhere all the time. Pain free was beyond my comprehension.

It took decades before a doctor figured out I had anxiety, not depression. And even more years before any doctor mentioned Fibromyalgia to me. I was about fourty-five. Then it took 2 years to get the right combination of medication. Then I had to move from Kansas to Georgia and it took about a year for Georgia doctors to get me back on my right formula. And now still I have trouble every year about one medication or another.

So I still feel like I have a finger in a light socket most of the time. In fact I am so sensitive my skin can feel the slightest change in the weather. I can tell if the temperature drops two degrees. I can fee a tiny breeze caused by someone walking by.

At the same time my brain is on overload and can't process most things like remembering what tv shows I liked and when (where) to watch them. I forget what I'm doing or where my (pick any object) is. I can't remember names for common things like hair brush or pickle. I get frustrated easy. I get overloaded easy.

I can't stand the tv section of a store. All that [makes hand motions] moving around hurts me. Yes, hurts. It's called Allodynia and that means that things that shouldn't cause pain, causes pain. And there's another (I forget the word) symptom under fibro that means my pain is always at a  higher level than average pain.

But back to stores. There is too much going on in a store, too many advertisements, too much colors/designs, too many people moving around. It all hurts. And that's not counting the way the floor makes my back/legs/feet hurt! Then there's the fear that people will bump into me and hurt me, or I will fall (I get overbalanced easy). Or that I have to talk to someone and they will see me as crazy because I forget words or I am somehow different because I'm in pain.

See, pain is like water. Sometimes it's good; don't put your hand in the fire. But for those of us with constant pain it's like the Colorado River cutting the Grand Canyon. It's deep and harsh and cutting and wild. It takes over and it takes away part of you all the time. And dealing with that pain is exhausting!

Any time I am out in public, talking to anyone, I feel this fear. Remember the stubbed toe? Imagine that feeling again, but now you are talking to people you know or don't know, it doesn't matter, what matters is, you can not let them see how much pain you are in. One, you can't even process how much pain you are in and two, you can't go acting like like you stubbed your entire body all the time...well, you could but you would get locked up in a nut house.

So, that is a little bit about how I feel when I meet you in public and try to have a normal conversation. If I manage to pull it off, I still go home and worry I said or did something wrong. I know for years people thought I was special needs. I had friends tell me people who were in class with me or met me somewhere asked them if I was special needs (not exactly the polite words, but the same meaning).

This is just a little sliver of the pie of what I deal with. Be kind to people. You never know what they are dealing with.

     Two weeks ago I was in a flare. A week long horrible even that made me unhappy to be alive. It felt as if I had a bad case of the flu, the never ending flu. I felt as if my nerves were being scrubbed with a Brillo pad. I was tired & restless, sleepy & anxious, sore all over & couldn't get comfortable. My hair touching my shoulders hurt. My eyelids hurt! I was in a haze of pain. There was no spot of me that didn't hurt.


     I didn't want to live if living was like that.


     Thank God (and meds) that I am better. During this flare I was also out of Lyrica, a medication for nerve pain in fibromyalgia (paperwork problem not my fault). Either the flare was because of that or made worse because of that. Either way it was a rough week.


     Now that I am getting past the flare, I feel so much better than I did. Even though I am still in pain, I told my doctor, that if I could I would have danced a jig I was so relieved to be out of the flare.

     Now that I am just past the flare I can see how much better I do feel. I am not pain free, or symptom free, but I am blessed I am not in flare mode all the time like I was for decades. For that I thank God!