Monday, November 28, 2016

Believe or disbelieve?

It's dangerous when your doctor doesn't believe you.
It's difficult when friends don't believe you.
It really sucks when family doesn't believe.

Thursday, August 11, 2016

I hate that I often can't see. It's like someone smeared Vaseline over them. 

Wednesday, August 10, 2016

Day 3 of OH MY GOD IT FEELS LIKE SOMEONE IS WHIPPING THE SKIN OFF MY BACK.
The nerve endings feel raw and damaged.  
And it's not fun.
No, it can't be shingles, I've never had chicken pox.
Before today Mom hadn't seen anything wrong with my back, but today she was putting cream on my back and said, "It just looks like mumps".  
Me:  O.O Mumps?!
Well, when I was a kid the doctor said I had the strain of mumps that would stay in my body forever and flare up any time  and mom said mumps can happen anywhere so yea *sarcasm* *insert unhappy face here*

Tuesday, August 9, 2016

After the creepy-crawlies feeling(feeling spiders or bugs where there is nothing), the actual ant bites (stepped into ants getting out of the car in town and had bites before I could get out of them) and wanting to claw my foot off (dang those bites hurt!), my back started burning last night. It felt like I was being whipped. But mom didn't see anything. Hello fibro nerves flare. I would rather have the creepy-crawlies nerve flare. =P

Friday, August 5, 2016

I woke up during the night doing the back stretches I do when my back hurts. Yeah, it's gonna be that kind of day. 

Saturday, July 30, 2016

I have all these symptoms except 3 of them.

Why can't I get tested?


No income... (wait for it) because I have all these symptoms!



http://tinyurl.com/m4lelfl 

MS: Multiple sclerosis is an unpredictable,often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and the body.

I have:

  • Fatigue
  • Walking (Gait) Difficulties
  • Numbness or Tingling
  • Spasticity
  • Weakness
  • Vision Problems
  • Dizziness and Vertigo
  • Bladder Problems
  • Bowel Problems
  • Pain
  • Cognitive Changes
  • Emotional Changes
  • Depression
  • Speech Problems
  • Swallowing Problems
  • Breathing Problems
  • Headache
  • Hearing Loss


Thursday, July 28, 2016

Tired. Tired. Tired. 
I'm so tired of being tired. 
I wake up tired. 
I go through my day tired. 
I sleep tired, eat tired, breath tired. 
Tired. 
Tired. 
Tired.

Tuesday, July 26, 2016

Good news. 

The tests I had done about 2 months ago came back negative for cancer, so that's a load off my subconscious. 

I really wasn't as worried about cancer as I was being a diabetic. I can't loose my sugar. 

But that was negative too, so yea!!! whoohoo!!!!! 

So the problems I was having id due to "hormone imbalance" which could be caused by stress, cause yeah, adding cancer worries to my life was the smart thing for my body to do when I need less stress. =P 

Anyway, it could be chemical or residual health issues. 

Either way, its easier than having cancer. 

Or diabetes. 

Monday, July 18, 2016

Gah! Gah! and GAH!

For the second time in about a week my desk has been invaded by tiny little ants! 

It's not bad enough that I have hypersensitivity and feel the tiniest breeze across my skin making me feel like bugs are crawling on me, noooooo! I have to actually have tiny bugs crawling on me too! 

GAH!!!

Thursday, July 14, 2016

Woke up and the first word I thought was THROBBING! My entire body (at least the upper half) was throbbing! Then of course my desk is covered in ants! I had to deal with all them before I could sit down and start taking my meds. The Boo got sick and I had to sit on the floor with him and then clean that up. Then I was able to sit back down and take my meds. I think I'm heading to the recliner to rest and it's not even 9am!
Another day with nothing to do. Nothing I can do. It's torment. I need goals, I need action /adventure! I miss being a fire fighter. I hate that I couldn't do what I wanted to do growing up. I hate that I still can't do.

Wednesday, July 13, 2016

This month has been the worst for doctor appointments!

Eye Doc
Last week I traveled an hour away to be told I don't have an appointment that day and then an hour home.... and I go to this doctor next week!

Plus I went there last month expecting to see the Emory doctor, but he wasn't there at all that day I was scheduled to see a regular doctor (never mind that I have a regular eye doc near by) and charged  over $150 for that visit which resulted in a lot of nothing, really. 

Then I get  a letter saying I missed a visit, but I didn't it was rescheduled and their computers were down so they didn't put it in later? I guess.

Then I'm told rudely on 2 over the phone and then later in person that *I* was the one who changed the date. If I had changed the day wouldn't I have known about it?! 

They had told me when I was there for the last visit, (with the OTHER doctor not the Emory doctor I wanted to see) if I had proof I was covered by ARMC they would do something about my bill. At the time I was waiting on paperwork from the government to turn in to get on the indigent program. She said that was fine, just bring it in next time. 

But she didn't want to take my ARMC papers because their bill (for the doctor I didn't want to see) started before the date on my ARMC papers!!  GRRR

Finally she took the ARMC papers (made a copy) and gave me my next date for sure. I asked because I had 2 different dates again in my stuff. 



Then

Specialist
We traveled over an hour and a half the next day through bad storms toward Atlanta to be told I didn't have to come in to see that doctor, but that I could get my results from my local doctor.

So we canceled and went home and called the local doctor who says No, he wont see me, I need to see the specialist. That's why I was sent to a specialist. Grrr

So now we have to make ANOTHER appointment to see the specialist and go back over an hour (about and hour and a half each way) and pay to see a specialist on top of the "every 3 months" appoints I have to pay for at the regular doctor to qualify for medicinal programs.

Anyway.

I am waiting to hear about when I can go back an hour and a half there to see the specialist to see if I have cancer or diabetes or what because my local doctor refuses to tell me. 

And I'm waiting on local doctor office to make appointment for me to see someone at ARMC (if possible) to see if I have MS. 

Saturday, July 9, 2016

I am gradually having more and more trouble seeing.

IDK if its Conversion again because I want to see my children and can't or it's a side effect of MS.


This is a Christian Kane type morning.

I hope I am pulling out of the flares I have been in for weeks.

My loose hair touching my skin was torture. Static Mechanical Allodynia

I was so tired my eye lashes hurt! Fibromyalgia

My hand felt like over stuffed sausages. also Fibromyalgia

The antibiotics made me tired and my mouth tasted like old nasty coffee (I hate coffee anyway).

The last joints of my middle fingers still hurt like they are out of place or something. And they are drawing up. This has been going on for weeks. I hope my general doctor gets me an appointment with a neurologist soon to get tested for MS.

I am still waiting on word from the biopsy done a few weeks back. It could be cancer or diabetes causing my symptoms. It's just more waiting. I guess slow news is good news? lol


Friday, July 8, 2016

Contrary to what the nurse said, the Doctor told me there was no medicine to help with nightmares. He did give me something to help me sleep, but I had problems. 

1) it didn't get me to sleep
2) it kept me in the nightmare which was a nightmare!
3) it kept me asleep in the mornings (hard to wake up) Mom said I was like an ole cat with her tail stuck in the door. Yeah, I didn't want to wake up at all

I am taking extra probiotics so the bad old coffee taste in my mouth is less, and more magnesium to help with IBS but  yea for antibiotics. =P

I found an article that I want everyone to read. Please. 


This is my second husband.

It is as if someone were videotaping our lives

and quoting him as an example

at every point!


I hate that I gave him the power to destroy me, my children, my extended family, my life and my reputation. 

Quite frankly I almost physically died because of his destructive ways.

I only wish I had seen it sooner!

I still pray people will see the truth. (But I'm not holding my breath.)



20 Diversion Tactics Highly Manipulative Narcissists, Sociopaths And Psychopaths Use To Silence You


http://tcat.tc/297GhKs

Wednesday, June 29, 2016

Went to 2 doctors yesterday.

The psychiatrist gave me something to help me sleep (hopefully without nightmares).

The general doc gave me antibiotics. Costly antibiotics that God gave us the money for. (It wasn't there before we prayed, but was there after.)

Now I have a gross (metallic) taste in my mouth, forehead feels hot and I feel sleepy/tired. Yeah for antibiotics. =P He gave me 10 days supply. I hope I survive. LOL

The veggies in the garden are staring to ripen. Tomatoes, corn, beans, peppers. Lots of peppers! =)

I am having muscle weakness and burning hands/feet. I am gonna be tested for MS as soon as the gen doc office makes the appointment. 

Also the last knuckles on my fingers hurt, like something pulled wrong or something. Yeah RA. =P

Side note: My little cousin has MG/LEMS https://www.mda.org/disease/lambert-eaton-myasthenic-syndrome 

Sunday, June 26, 2016

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?!

Wednesday, June 8, 2016

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.




Tuesday, May 17, 2016

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.

Saturday, May 14, 2016

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.

Sunday, May 1, 2016

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.



Wednesday, April 20, 2016

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!

Wednesday, March 23, 2016

Hello spring means hello allergies!
Stuffiness, runny eyes and noses, allergy film in eyes, allergy bumps in eyes, sore nose and throat, headache, dizziness, sneezing, coughing,sore lungs/ribs, bronchitis & pneumonia at least.
So yeah, hello Spring. So glad you could make it. =P

Tuesday, March 15, 2016

Sometimes I post/tweet/blog because Im in so much pain that I know I need someone else to remember my life for me. 

Sometimes I post/tweet/blog because Im in so much fatigue that I know I need someone else to remember my life for me. 

Sometimes I post/tweet/blog because Im in so much brain fog that I know I need someone else to remember my life for me.

It's not ego that leads me to share it's the very real, tested truth that I often can't remember my life.  
I walk a tightrope over a chasm of viscus depression and one misstep with my thoughts, my behavior, my medication, illness or anything else can cause me to tumble into that depression.

This is my life.

The tightrope stretches from before I was born (because I believe life begins before birth) to sometime in the future when I will die. It represents my life.

Depression is below me in all eternity. It is bottomless and endless below me. It is always there. If I can't maintain the balance I fall.

I struggle to keep all the big and little bits of my life in balance so I don't fall. I always know in the back of my mind I can fall any minute. If I fall I will be pulled under the thick black sticky mess. I will slowly (or quickly) drown in depression. And balance is almost always dependent on something out of my control.


I walk with a balancing stick that is like the bar on a set of scales. If one thing on either end of the balance changes I risk falling. The balance holds my medications, my body's reaction to medications, illnesses, thoughts, fatigue, weather changes, and anything else that might effect me in any way.


Sunday, February 28, 2016

I'm still fighting infections, so there's that.
I feel like bugs are crawling on me, but there's nothing there.
I'm still waiting on disability.
I am having a lot of anxiety these days.
I hope I get back to blogging here soon.