Fibro Vlog 1

Needed My Walker...

I was in the middle of a 5 day flare-up when I could no longer get to a standing position from a sitting position.  When I could get upright, my knees gave out and I tumbled onto the futon. FUCK!

Time to get out my walker. I only needed it, at first, for the one evening, but then I needed it again two days later.  The only thing I don't like about it is that it has wheels and sometimes goes faster than I do! I feel like it will ZOOOOM out in front of me.  Here's a pic I found on the net, but mine is all black:

  

I used to borrow one from my Gramma - I liked that one better. I may have to find one like it, since Gram is no longer with me.  Anyway, I liked that one better because it didn't have wheels - no zooming out from under me.  It was light weight too, so I could have someone take it upstairs and then put on my side of the bed - there to help me get up and out of bed in the morning! That one looked like this: 

The last time I needed a walker was... I think in 2010 and it was around Christmas time. I decorated it with garland and battery operated twinkle lights! It was great fun. Well... as much fun as could be had! LOL

I'm on the way out of this flare-up, but it sure is taking longer this time...

Easing Out Of It

Today, I'm at a Level 2 - this is according to the Fibromyalgia Pain Scale by Carol J. Johnson, which can be found, HERE.

That's alright. I can ignore many things - pain included.  Yesterday was a different story.

Yesterday, I needed my prescribed muscle relaxers, Advil, a natural muscle relaxer, ice, pillows and a gel stick from "The Happy Hempsters" (I think).  It took all day to get about 2.5 hours of relief; at which point it started up again. Fortunately, but that time I was at home and took a heavy dose sleeping pill.

Pain Scale by Carol J. Johnson

Fibromyalgia Pain Scale
When you go to your doctors, one of the first things they will ask you is: "On a scale of 1-10, where is your pain level?" But they fail to give you any degree of pain measurements to go by, so our support group has come up with our version of the Pain Scale.

Level 1: You experience very minor pain in parts of your body. You don't have to take any pain medications and you can do your work with no problems.

Level 2: The minor pain has increased to dull aches in some parts of your body. You don't have to take medication and you still can work as usual but you don't want people 'in your face'!

Level 3: Your minor pain is strong enough to get your attention. You resort to Over the Counter medications. You are getting grouchy now.

Level 4: Now you can only ignore the pain if you are involved in activities at work or home. You are taking more Over the Counter medications but they don't last long. You begin to cut back on your activities in favor of just sitting down.

Level 5: You can't ignore this pain for more than an hour, even with Over the Counter Medications. You cut back of all activities except the most important ones. Work is possible, just barely.

Level 6: You simply can not. Ignore your pain for even a few minutes. But with prescription pain medications you have limited functioning abilities.

Level 7: This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time,. You limit your activities in order of importance. You really can't work well.

Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything, Work is out of the question.

Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You might want to give some one Power of Attorney. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you.

Level 10: Pain has made you totally unable to function. You don't want to deal with or talk to anyone. Even with narcotic pain medications you are still in horrible pain. You go to bed or go to the emergency room for any help you can get.

This is how we have divided the pain scale into a workable reference guide for our group and our medical staff. We hope you can use this as a guide when you visit your doctor and have to describe your pain. Our optimal goal of course, is to stay with in the range of 1-4 or even to get to PAIN LEVEL 0, which is NO PAIN!

By Carol J.Johnson
Link to Carol J. Johnson's article.

Pain Scale for Fibromyalgia

The ORIGINAL article can be found here. 
Disclaimer: This isn't written by me! It was written my a lady named Paula, so SHE was the one that designed this pain scale. It's really rather helpful!

Pain Scale for Fibromyalgia

I designed this pain scale as a tool to help the Fibromyalgia patient clearly communicate to his/her doctor the pain levels that he/she is experiencing.

I hope this helps you because at some point in treating my Fibromyalgia, a doctor asked me to put a number value on my pain levels. One thing that we do know is that pain is subjective. What I think of as an 8 and what you think of as an 8 may or may not be the same.
I was really having a hard time assigning a number to my pain levels, so I made this pain scale. I took it to my doctor who received it well. From that point on, she seems to really understand my pain levels now and we have had much better success treating them.
Frequently, I see people whose doctors don't seem to be taking their pain levels seriously. I hope that this pain scale can help everyone get the relief they need by helping the doctors "see" what we are feeling.
(Written by Paula on the ‘Clouds’ message board.)
Please note: This is the pain level that is experienced AFTER taking the daily medication prescribed by your doctor. 0 Pain free. 1 Very minor annoyance - mild aches to some parts of the body. No pain medication needed. 2 Minor annoyance- dull aches to some parts of the body. No pain medication needed. 3 Annoying enough to be distracting. Over-the-counter pain relievers (such as Naproxen or topical treatments such as Arthritis Pain relieving rubs) take care of it. 4 Can be ignored if you are really involved in your work, but still distracting. Over-the-counter pain relievers remove pain for 3-4 hours. 5 Can’t be ignored for more than 30 minutes. Over-the-counter pain relievers help somewhat (bring pain level from 5 to a 3 or 4) with pain for 3-4 hours. 6 Can’t be ignored for any length of time but you can still go to work and participate in social activities. Stronger painkillers (such as Ultram) relieve pain for 3-4 hours. 7 Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers (such as Ultram) are only partially effective. (Stronger pain killers bring pain from a 7 to a 4-6 level.) 8 Physical activity severely limited. You can read and converse with effort. Stronger painkillers (such as Ultram) are not effective. (Narcotic painkillers do bring this pain down to a level 3 or lower level.) 9 Non functional for all practical purposes. Cannot concentrate. Physical activity halted. Panic sets in. (Narcotic painkillers bring the pain level down from 9 to the 4-6 level.) 10 Totally non-functional. Unable to speak. Crying out or moaning uncontrollably - near delirium.

On a Scale of 1-10

Where am I today on the pain scale?

At a fuckin' 12 -

Seriously, they need an adult version for the stupid little pain scale model. You know that one with the smiley faces turning into angry faces? I'm not angry, I'm in PAIN! There needs to be a face with tears running down the face, mouth wide open like it's screaming or one with a conversation bubble over it dropping the F-bomb.

0:  Hi.  I am not experiencing any pain at all.  I don't know why I'm even here.

1:  I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.

2:  I probably just need a Band Aid.

3:  This is distressing.  I don't want this to be happening to me at all.

4:  My pain is not fucking around.

5:  Why is this happening to me??

6:  Ow.  Okay, my pain is super legit now.

7:  I see Jesus coming for me and I'm scared.   

8:  I am experiencing a disturbing amount of pain.  I might actually be dying.  Please help.

9:  I am almost definitely dying.

10:  I am actively being mauled by a bear.

11: Blood is going to explode out of my face at any moment.

That would help alleviate some pain right there! It would give us something to laugh about!

7 Days Into August...

It's only seven days into August and I'm on a 4-day flare up. Not really too bad, but enough to slow me down.  On day 1 I was so medicated, on an empty stomach, that I would sway.  On day 2, I couldn't get up from the couch without my walker.  On day 3 parts hurt everywhere. Today, day 4, I hurt everywhere that didn't hurt yesterday! LOL

It's my own fault - too much sugary drinks lately. Tonight I said, "Fuck it!" and actually ate two smallish pieces of crust from my pizza. The other pieces I skipped the crust.  I was going to fast this week - guess I'll start tomorrow! LOL

Time to medicate and go find the recliner.

July Woes 2012

My July 2012 was filled with health issues...

Sore spot on old c-section scar.

Tenderness all over

Bloating

Fatigue

Vertigo

Abnormal PAP results

Praying

Ultrasound

Transvaginal scope

Lumps, bumps, bruising and more

Masses vs. cysts

Cancer scare

Sleepless nights

Medications

Pain days

Drama

A few pounds heavy

Tenderness at the waistband

Fibromyalgia hot spots

Gluten issues

~

~

~

July ended with a praise report...

No cancer

Still the tender body issues

Now the medical bills issues

Always the praise.

For it wasn't this ~ It would be something else.

I'll take this.

Thank you, Lord.

Three-day Flare Up

How long does a flare up last? Mine last about three days it seems.  My last one was three days and a little more, but I was able to function and go to work so at the end of it.

The weather has been wonderful the past few days. After a flare up I feel like Wonder Woman! I have to be careful to not overdo - lest I go right back into waves of pain! It's been alright though. I got all caught up on laundry, dishes, dusting up golden retriever fuzz and cooking! I miss cooking the most.

So, since I have the morning yet, I'm off to jump rope and then bake some gluten-free brownies!

Black Bean Gluten-Free Brownie Recipe

Overwhelmed

I'm feeling a bit overwhelmed with what I WANT to do vs. what I am able to do.

For instance:

There are days when I want to get the housework done and I can't.
There are days when I want to be in the garden and I can't.
There are days when I want to be at the computer and I can't.

I need to focus on what I can do...

I can give words of encouragement.
I can show my family that I love them.
I can direct my household from the couch.
I can talk on the phone while resting.
I can share a movie with my kids while on the couch resting.
I can read lots of books on those days when I need extra rest.
I can always pray, resting or not.
I can rest and enjoy the breezes that gently blow through my living room windows.
I can enjoy my time homeschooling my guys.
I can sit and enjoy the ride, while someone else drives us to the beach.

I have more CAN-do's than CAN'T-do's.

A Day Centered On Pain

I am in alot of fucking pain!

Today

Endo pain

&

Fibro pain

Work in the morning --- all day long

Four pills instead of two

Two more pills instead of one

Endo in front

Fibro

in back, legs, neck and upper arms.

Arms Today

Today, it's the arms that don't like being attached to my main frame. Too bad for them. They have to stay put. I can't take them off!! I don't know why they ache today - I guess fibro doesn't need a reason.

The meds that my doctor gave me the other day -- they are way too strong for me. In fact, I think after a few days, they caused a jittery nervousness in my system.  I couldn't fall asleep like I normally did before I started the meds.  Then, after finally falling asleep, I didn't wake up until 9:30 a.m. yesterday and almost 10 a.m. today.  Normally, I'm awake by 6:30-7a.m. and I'm bouncing outta bed.  On these meds, I noticed that I'm half asleep, groggy, foggy in the brain and not functioning properly until Noon or later.  This just won't do.  So, I'm stopping this med.  I think I'll just ask for a 5 mg. Valium or something. This 30 mg. pill is way too strong.

Weather Front?

This card isn't my design, I saw it on
etsy - I think by a J. Cuthbertson.

The weather was pretty steady this past weekend. While Friday was fraught with waves, Saturday and Sunday were wonderful pain free days.

Today is another story. The forecast for tomorrow is 80% chance of a snow 'storm'. I wonder if this is the reason for the change in my pain.  I had a good night's rest both Sat. & Sun., but today I awoke with an achy right side of the whole length of my body. Honestly, head-to-toe I'm aching and I have no explanation as to why.

I'm told that's the deal with fibro - that there is no rhyme or reason to one's pain.  Is that what is going on with me?

Pain in Waves

My blogs are like oceans. I've said that before.  However, now I'm relating my body to an ocean also.  Some days I'm calm and serene. Other days the waves are loud and crashing; all consuming and hypnotizing; powerful surges from head-to-toe.  Like an upsurge or rise, pain comes to a crest.  Progressively swelling not only in size, but also intensity.  I am reminded by that sea shell to tread lightly through my pain... through my life.  Nothing matters unless it has to do with eternity. I tread lightly through my pain days. Eventually, calm will come again. The sun will come out as the fog clears.

When I'm in the throes of a flare up, it feels like it will never end. I know it will, but it's kinda overwhelming and sometimes I get scared while I'm in the middle of it all.

Not only do I feel waves of pain going from the top of my head to the bottom of my feet, but I also feel a nagging headache trying to get my attention.  I feel that I may be slipping into a weekend that will end up on the couch. Waves of pain are slowly growing in their intensity. I'm glad we got some movies!  One of them was the second half of the latest Dr. Who season! Yay!  The laundry is pretty much done, the house is pretty much clean, the dishes are done and this weekend we will use paper plates if I'm not up for anything.  I wonder if wine coolers will put me to sleep or aggravate my pain???  hmmm... Groceries are purchased and put away, so lunches won't be a problem. 

I guess I can just sit back and try to relax!  I wish I had a list of uplifting scriptures to go to when I'm in this mindset. I have a friend that can help with that - I'll send off an email to her straight away!  Then I should be all set when my hubby gets home!

Pain Days Come and Go

My Fibro & Endo are both aggravated by poor diet and stress, etc.

Back in April (2011) I lost 2 part-time jobs and a Gramma died. Then in May my Dad had a heart attack. He lives in a state that is a 3-day drive away from me.  In June, another Gramma died.  July saw me with a bad back.  During those several months, I was not taking very good care of myself.  Lack of sleep, lots of stress and forgetfulness.  I forgot to take my supplements regularly, if at all and had to succumb to pain meds for my back and sleeplessness.  I also had to eat in the car between working and visiting in two different cities.

I am now back on track, but with my last cycle I could certainly feel the effects of my forgetfulness and previous high stress levels!  My cycle was incredibly hard and painful. I passed large blood clots and had several headaches.  In April I remember I actually had to take Ibuprofen for the pain. My sleepless nights in May, spent waiting for that phone to ring and making medical arrangements for my Dad created a perfect body environment for fatigue headaches and body aches.

I must stress how important it is to NOT let the small adjustments to your health habits slide away from you during times of stress.

 I am a bit... anxious and nervous to see what my next cycle will be like.  I am also trying to remain calm and centered. Focusing on peace and tranquility; health and diet; and keeping stressful situations at bay.

I have closure with my Grandmothers' deaths and I just recently found some closure with my relationship with my Father.  I have lots of other people to pray for, whose situations are more dire than my own and I'm trying to keep my focus on the Lord.

I now have some free time, due to the passing of my Grandmother and I am using that time to get back into my art hobbies.

I am also buying enormous quantities of chocolate from Fleet Farm - they just had a sale!

Please take care of you. Remember who you are without pain.

Gentle thoughts and hugs ~Tyra