Missing meds is a PAIN!

I accidentally missed my fibro meds one afternoon and didn't take my meds that night. Big mistake! I woke up hurting around 3am and couldn’t get back to sleep. It felt every joint was becoming bedsores. Like my joints were gonna come thru my skin. I got up and took my fibro meds. I hope I never miss my meds again! But I dread the day they don’t work. It seems all meds I take eventually quit working, or my body adjusts to them.

I’m in the middle of moving and having boxes everywhere is killing me. Too much stimuli and stress! Also this move is bittersweet so that’s stressful too. Did I mention stress and stimuli cause pain? =P And moving things around is also painful. And I dread the 2 to 3 days drive I have to do as my move. *sigh*

I found an article about Fibro symptoms you may want to read.

http://www.dailymail.co.uk/health/article-2054759/Fibromyalgia-The-debilitating-condition-leaves-sensitive-sufferers-excruciating-pain.html

Boo is a super service dog!

I spent hours today working on final project for PhotoJ3 class. It was several separate pages. When I put them all in a folder & tried to open it my computer crashes. I’m thinking “no way, that didn’t just happen.” So I try again and my computer crashes again. I try opening the folder a different way. Crash. All that work trapped. >:[

I try to run a malware program but it won’t go in the folder. I had no idea what to do so I right click on the folder and read the options… again… in desperation.

Finally tried search in the folder, not open.  Search finds them so I moved them from search to desk top. Okay, so I won I beat the crash-inducing-folder. I create a new folder to put my work in and try to open it and it crashed the computer again. >:[

Finally I decided “no more folders” and just saved my work individually on my memory card. I will live with it not being organized. I can open the work.

*whew* 

Oh & the best part: when the computer was crashing Boo came over & needed to be held. He calmed me down before I knew I was panicking. He’s a great service dog!

Pains of the Day

This morning I wake up with the usual concern: will my legs hold me up for the three steps to the toilet. And as usual I need to brace myself with my hands on the doorframe and sink to make it. My legs always feel kinda asleep and in pain at the same time every morning.

Then I make my way to my chair at the computer (where I always sit) and notice my hands are hurting more than usual. I know I need my meds as soon as I can but I’m sure I can’t open the bottles so I sit the bag of meds on my desk so I will remember I haven’t took them yet and work on my hands. I open and close my hand and rub them trying to get the over-stuffed painful feeling to ease.

Also I can’t really see. Everything is blurry and out of focus, just like every morning. It lasts a little long than usual and I really hate it.

I know I have to give Boo his meds and I pretty much fall into the floor from my chair because my legs didn’t want to hold me as I sat down. I managed to give Boo his meds without a problem and I wait a while before I risk trying to stand.

With a little help from the chair and I manage to get in the chair. I work on my hands some more until I think I can open medicine bottles. I take my meds and wait for them to kick in.

My calves have hurt since the day before. I didn’t do anything to cause it; just one leg cramped then the other one did later. It makes walking hard so I kinda waddle like a very old woman. I try to make sure I don’t waddle in public no matter how much it hurts. Never act hurt in public. Hide as many of your troubles as you can.

It took a long time before I admitted any troubles on Twitter. My Tweeps were shocked that I wasn’t a healthy, active 20somthing year old. Now I tweet, Facebook and blog and have a website about the Fibromyalgia that changed my life. I do it because I hope it helps someone realize what’s wrong with them or a loved one and get help sooner than I did. 

silent migraine

I feel like I can’t see, but I can see if I stop and concentrate, but that makes my head have a dull throb. There is an aura, but it doesn’t spread or last an hour.

I feel restless yet I know I should go anywhere. I feel sick at my stomach and achy. I want to nap.

I remember the cold chills I had over and over last night. Chills where I couldn’t get warm enough. Flu like chills.

This feels like a silent migraine happening because of a Fibro Flare. *sigh*

Why can’t I have at least more healthy days than sick? But no, my good days are like perfect weather days you get in a year. You get a few in the Spring and a few in the Fall but mostly its too hot, too cold, raining, snowing, ect. There’s almost something unpleasant going on.

That’s how I feel about me and my body, there’s almost always something unpleasant or downright awful going on. 

Living With Fibro

I created a new website as a school project. I decided to make it about Fibromyalgia because it’s something that has changed/destroyed my life more than once. I have all but 2 or 3 of the more than 100 symptoms of Fibro. The doctor said I am a classic example of Fibromyalgia, and I said what a thing to be a classic of.

I hope you will visit and read my website.

Living With Fibro

http://kansasphotography.wix.com/living-with-fibro

migraine

I didn’t really feel like going to class today. I was really tired and sleepy, but I knew we were doing teacher evaluations and I needed to be there. On my way there I started having a migraine. It starts as a spot of prism lights then it spreads out to a string of prism lights blocking all my eyesight in one eye. As soon as I got to class I took my meds and waited. It took 15 to 20 minutes or more to get my vision back. Thanks to getting my meds as it started I didn’t end up in bed (for days) but I do have a headache and feel nauseous. 

I love SYFY movies.

I love SYFY movies. 

They are so predictable and bad they are wonderful. It’s a great way to spend time vegging out in front of the tv.

I’m watching Dinocroc vs Supergator and we just seen the traditional blonds in bikini run. They won’t last long. It’s just the fate of all busty blonds in “scary” movies. LOL 

And the people with guns never think to shoot in the reptile’s open mouth because the scales on their bodies protect them.  And even if a mouth shot doesn’t kill them they wont wanna eat you with a sore mouth. Just my theory.

And then there is the bad acting. Oh so very bad. The “I could do better” bad acting.

SYFY movies are just fun to watch. 

Bits and pieces, snips and snippets, thoughts and thinks.

Bits and pieces, snips and snippets, thoughts and thinks. I haven’t had much to say lately. Not here and not to my friends. I have just felt….quiet. I don’t know why, I just ain’t thinking of anything to say. Nothing more than a sentence or two, so here goes a blog of a few sentences here and there.

My BFF back home in Georgia is Michelle. Her daddy has lung cancer and doesn’t have long to live. I am in Kansas and I wish I was back home with her.

I got Boo a new leash. The one I did have was thin and often got into knots. It also hurt my wrist. It was cut from a retractable handle that didn’t work anymore. Now the new leash is thicker, wider and not retractable. It was cheaper to get a longer leash that wasn’t retractable. I’ll handle drawing it up and letting it out myself for half price. Oh yeah.

I don’t like it getting dark at 4pm now. It’s depressing. I like when the days last until 9pm. And I miss the sunshine.

I broke a tooth. To get it fixed I have an apt Dec 18 (almost 2 months from when I asked). But that appointment is for a cleaning, after that I get an appointment to get my tooth fixed. It’s distressing because a year and a half ago my teeth were fine, now I have a mouth full of cavities. All because one (or more) of my meds cause dry mouth and I was “extremely low on vitamin D”. Before I knew that I could hardly get out of bed and I missed more class than I made it to. So now I take vitamin D, but nothing helps my dry mouth in the middle of the night unless its my fingers or thumb in my mouth to make it water. Well, one night I woke up biting my thumb from stress. So that’s not the best solution so far.

I talked Boo into playing with Silly Duckie and Boo eventually chewed a hole in it. Well, there was a hole in Lambchop so I sewed them both up and Boo was so excites to get them back he chewed more holes. I haven’t sewed them up again yet.

My computer is so full it wont hardly work. I’ve tried file compression and defragmenting it but there is only 5% of useable space left. I’m not surprised. It’s old. I don’t know if I should get discs and save pictures or get a mobile hard drive and move a lot of stuff over. 

Zombie Run

Last Friday morning I was brought awake by extreme pain in my feet. Especially the left one. It was all I could do to put it on the floor and put weight on it without screaming. The soles of my feet had been tender and had spots that felt like stone bruises. After a week of hurting, swollen and sometimes discolored feet I go talk to the nurse at the clinic. I got some numbing cream for my feet. I don’t feel the numbing but I have found myself taking deep breaths to relax without thinking about it.

Last Saturday I went to a Zombie Run. It was very cool! I got pictures of the race starting and of the runners encountering the last Zombie of the run. That way I didn’t have to walk far to get the pictures I took.

I’m just very proud of me for not being scared to go to the Zombie Run. Boo and I did go find the park Thursday and looked around so that helped. A lot!

Today I went to The Horror Club meeting for the first time and wasn’t scared. It was on campus and I was actually excited to go which helped. And I had talked to the main person on the school sight, so that helped more. And even more help was that my teacher told me what a nice person she was.

I’ve made big strides this week, on feet that felt scalded. Not bad, Amanda, not bad. 

I woke up on fire.

I woke up on fire. I didn’t want to wake up but I couldn’t catch the sleep and hide. My skin, muscles, bones everything felt like it was covered in electricity. Sore and on fire, that’s how I felt. I could tell I had slept in one position for a long time.

It was so hard to move because I was all stove up (stiff) but I had to get up and let Boo off the bed to potty. I take all my energy and get Boo safely off the bed and go to the bathroom myself.

Boo has the bed monkey (the toy that stays on the bed). I can tell he wants to keep it but it needs to go on the bed so there is always a toy on the bed for Boo to play with. I tell him that and that he has a monkey to play with already. He doesn’t care, he wants Bed Monkey. He’s sad when I take it away and put it back on the bed. I hate that but I don’t want it messed up.

I want to rest but Boo need breakfast. My fingers burn and are stiff but he needs to eat. Now I need to take my meds, meaning opening bottles and little pills and big ones and swallowing them.

Boo wants to play fetch. I can’t throw far, but I make myself hold whatever toy he brings me and throw.

Now he wants to be held. I place him on my chest and wrap an arm around him. It’s hard to breath, but I love holding him. He puts his cold nose in the crook of my elbow and goes to sleep. My arm is barely holding any weight but it’s a struggle.

I have to move my leg because after it being bent for a little while it’s asleep and hurting, this moves Boo and I can’t hold him anymore.

I hate the way I feel. 

Fear & Anxiety

Fear & Anxiety

Fear is an emotion induced by a perceived threat which causes entities to quickly pull far away from it and usually hide. (Wikipedia)

Anxiety is an unpleasant state of inner turmoil, often accompanied by nervous behavior, such as pacing back and forth, somatic complaints and rumination. (Wikipedia)

I have a lot of fear and anxiety. If it was up to me I would not leave my home, and groceries and such would be brought to me.

When I do leave my home for class I try to get there before I get stuck in a crowd on the Oval or in the halls. I sit up front and pretend I’m the only one in class. My teachers know my situation and are very understanding. If I needed to bring Boo I could.

Today was “Day In The Life”, meaning everyone in PhotoJ classes and in SAPS club had to take pictures on campus only this year we had to write a cut line, meaning I had to talk to the people I just took a picture of. In my experience people don’t like their picture taken so this is very hard for me. But I did it and I got a good picture. Only 1. If I had been less afraid (and had a coat lol) I could have gotten more.

If I go somewhere other than class I take Boo with me. He helps distract me from too much stimuli (Allodynia) and comforts me. He also will “pull” me out of a situation if he needs to.

I don’t know what its like to live without this strong fear. It was in the belief system I grew up in. So many “do” and “don’ts” and everything you do could cause someone else to go to Hell. Being told over and over that I may be the only Bible some people read. It was constant fear about everything.

These days I refuse to think that way. I do what I do and people watching me can read a Bible, I’m not their Bible. I live in a country where information, including Bible verses are found easily and even a computer will read them to you. You don’t need to look to me to guide you and don’t blame your choices on me.  

Chicken fajitas

Having Fibro and fatigue I usually need a rest after putting a frozen pizza in the oven, but some days I can cook something easy. Here is what I made today.

Chicken fajitas
Drain & heat canned chicken. Add some fajita seasonings.

Butter an oven pan and place tortillas on it.

On each tortilla put 1 tsp of salsa & some fine shredded cheese.

Put chicken on cheese and top with another tortilla.

Butter the tops and place in oven to melt cheese.

My online family

Before I knew what was wrong I was very weak with fatigue. But then my friends online cared enough about me to insist I go to the doctor. They saved my life.

We met when I joined their OLRPG (On line role playing group) and joined their family.The RP is based on Supernatural, a tv show we love to watch.

After a while of RP online and meeting behind the scenes to plan SL (story lines) we became family behind the scenes. That’s how they got me to go to the doctor.

Alastair, more often known as Al is the leader of our family. Al makes sure I get my homework done and looks after the rest of the family just as much. Al will also find the best, most obscure spoilers for the tv shows we watch. Al knows a lot!

Sam is the other member. Sam was harder to get to know, but that’s cause she’s shy irl.  Sometimes Sam understands me better than even I do.  I will say something and he will clarify what I mean and I’m like “Yes! That’s exactly what I mean!”  

Some shows all three of us watch so we watch together, not just Supernatural, but we have found other shows we like to share. Sometimes Al & Sam watch a show I’m not into. Al used to worry this made me jealous, but it doesn’t. When they are talking about that I am there but watching tv, playing freecell or reading. I just like being there even if it’s not about me.

thick, stuffed sausages

Today my hands feel like thick, stuffed sausages with pain. Some researchers think fibro is in the hands and feet. That there are more blood vessels and pain receptors in the hands and feet than people without fibro. (There is also proof that fibro is a blood flow problem in the brain. I wonder if they are connected or different kinds of fibro).

“The discovery also reveals clues to the cause of other fibromyalgia symptoms. In the hands and feet, the blood vessels act as shunts, helping to speed blood flow and regulate body temperature.
The shunts act like a radiator in a car, Rice said, shutting down in warm conditions to radiate heat and opening up when it gets cold. The increased activity of the fibers in cold weather explains why fibromyalgia sufferers experience more pain during chilly times.
The extremities also act as reservoirs, storing blood for when the body needs it, such as during exercise. So, problems with blood vessels in the hands also interfere with blood flow throughout the body, Rice said, perhaps explaining why fibromyalgia patients feel pain in various muscle groups. A decrease in blood flow from the hands may also trigger fatigue.”  http://www.healthline.com/health-news/aging-scientists-find-physical-cause-of-fibromyalgia-062113




LATER THAT SAME DAY:
My hands are feeling better. I added several more hours of sleep in a warm bed and I feel better. Despite sleeping all night, I slept hours this morning. I wonder if sleep is a help to other people with fibro as much as it is with me. My guess is yes since we all have fatigue. But I can sleep even without the fatigue.  When I get cold I get in my bed and get warm and sleep. So a theory is that fibro is in the blood flow of the hands & feet. Maybe once I get my hands and feet warm I relax and sleep. Or the blood flow is directed “wrong” and I get tired and sleep.  

I’m Walking On Sunshine! Oh Oh and don’t it feel good!

I’m Walking On Sunshine! Oh Oh and don’t it feel good!

I heard that song on one of my favorite tv shows, Supernatural. One of my favorite characters, Charlie, was dancing to it.

It’s also how I feel today. I only hurt a little and I’m stiff so I feel good. If only I could get a massage oh how good I would feel. But I don’t have that kind of money. Oh well, I will take feeling this good.

I got Boo a new orange squeaking toy yesterday. He started playing with it in the truck and is still playing. He loves fetch. We play for hours when I feel good. Even if I have to use both hands to toss it, but then Boo senses when I can’t do anymore. He will either chew it to make it squeak or “bury” it in his blankie and dig it free. He will play that for hours too. I have such a happy puppy.

This morning it was raining and I was hurting.

This morning it was raining and I was hurting. Thank you rain. Not really. It’s actually the change in barometric pressure that makes me hurt. The faster the change, the worse the hurt.  That also means I can feel a storm over 200 miles away. How often are there storms within 200 miles? Way too many!

When a storm is bothering me, I feel like I have electricity all over my skin, my muscles feel tight and sore, my joints feel stiff and sore and my bones hurt. This pain is all over my body and is relentless.

Boo wanted to play fetch this morning. All morning. I played with him, but it took both hands to toss his toy 3 feet away at times, but I played. And Boo was very happy.

The sun is shinning now and the pain has receded. There is still a storm out there, but no fast barometric changes going on where I am. 

Still feeling okay...Today I saw a fight...Also today I went to...

Still feeling okay... Which makes me nervous. Anytime I feel pretty good I have a big flare, or a medicine quits working or something else happens. I don’t want a fare. I don’t want to be sick at all, feeling okay is so very nice! I just wonder how long I can do it.

Today I saw a fight in the parking lot outside my building. And I don’t mean a mild disagreement, but there was yelling, cussing, throwing things, hitting and more. I look up and see a woman hanging of the side of a car as a man backs up. O.O I heard she was the mom and trying to break his car window. I just know it was a crazy sight. I’m glad the police was called for such a fight.

Also today I went to get my stuff from my ex who said he couldn’t afford to bring it too me. So my caseworker follows me all the way over there and we get the police to make sure everything is ok and ex says he probably got rid of my stuff, but he will look for it in the storage shed he has. That means a new trip there if he finds anything of mine.

I’m doing pretty well today

I’m doing pretty well today. I am finally getting over the meds that was giving me anxiety. But I am sleeping a lot. My body is exhausted from 6 weeks (2 months?) of super high anxiety.

But today, other than tired I am happy. I am getting school work done and I have friends in person now. And Boo is playful and wanting me to hold him some. That didn’t happen when I was so anxious.

And I do not need to eat as often to stave off feeling bad. This is a relief since I need to loose weight.

[LATER THAT SAME DAY]

My friends went swimming, but I just hung out beside the pool. It’s October and the pool isn’t heated! Nope, sorry, I’m staying dry. And warm. And not cold. LOL

But we had fun, I took pictures and we chatted about everything and nothing and anything. And it was nice to just sit by the pool and relax! 

Hurray! October

Hurray! October is finally here! Fall colors and Halloween candy! And…my birthday! \o/ Yay! I just love October, as you can tell. And it’s not just my birthday, several in my family have birthday in October, including my cousin who was born on Halloween. Not to be totally out-done by Halloween-Cousin, but I was born on Friday the 13^th, so there. LOL 

I love fall colors especially on a sugar maple tree. There was one in my hometown that was striped as if God used finger paints to make a rainbow on that tree. I wish I had owned a camera that fall. 

And then there are the mountains back home all alive with color and fall festivals. There is magic in the mountains in the fall. 

October is a wonderful, fun happy month!  

Sleep, beautiful sleep! Well, rest, beautiful rest.

Sleep, beautiful sleep! Well, rest, beautiful rest. I was sleeping before but not resting at all. Now that they changed my meds I am resting. A lot. As in day and night all weekend. I just hope I get caught up before school Tuesday!

Boo has really been a trooper and slept in “Big Bed” every time I wanted to. LOL

I did take some pictures for one of my assignments today. And I managed to work on a paper and here I am blogging. Im a Beast! 

What do I feel now?

[BLOG TWELVE]

Only since being diagnosed with fibro, have I realized that I can't tell when I am tired because I'm tired or because I’m hurting. I spent the majority of my time in bed because I thought I was tired but it’s possible I was just feeling so much pain my brain was too tired to feel anything but tired. That is just a guess.

Tired makes me feel fibro, hunger makes me feel fibro, and possibility my asthma makes me feel fibro. And countless other stimuli make me feel my fibro. This I know; too much stimuli, too much noise, too much doing/thinking makes me feel fibro pain. Too much stress will make me feel it too. 

The past few weeks I have learned that I also can’t tell if I am hungry or in pain. I just know I feel bad and it’s a guess if I need to lie down or cook something. And since the bad feeling comes on gradually from “level 1” pain to level “H. E. Double Hockey Sticks” pain it’s usually too late to do anything to really get the pain to go away.

Sometimes I know I am hurting because I can’t be still and concentrate. (You can tell I wrote some of these blogs when in pain because they sound jumbled.) I twitch, get up and sit/lay down, shake my hands, wring my hands… there is constant movements.

I can’t seem to control my temperature. I will be cold but I don’t know it, I just feel fibro pain. It’s like I have a bad case of the flu and can’t get warm, or I sweat for little or no reason.

The answer is not a schedule of sleep and meals (sorry doc, you’re wrong about this) because I never have the same stress/stimuli (life is fluid like that) so how do I schedule for that? How will I know in advance when I will be hungry or tired or simply hurting?

For all I know pain or tired may not be the reason I feel bad. It could be something I haven’t thought of yet.

The patience of Job

[for BLOG ELEVEN]

I have always prayed “Dear God I do not want the patience of Job! No thank You!”  Meaning I did not want to go thru what Job went thru, especially when he lost his children! 

But I seem to have become Adam who said, “Lord, that Fibro (Adam said woman) that You gave me has caused all this trouble. The trouble is directly linked to You, God. 

(NASB version: The man said, "The woman whom You gave to be with me, she gave me from the tree, and I ate.").

Basically Your timing, God, in my life cause me caused all this trouble.

I know the Bible says God is perfect and that His will is perfect, but you can’t ever convince met that giving me Fibromyalgia before I had children and before it was even names as a thing that people had for real was in any shape for or fashion good for me or the children. The children that always belong to God and I was basically just babysitting for Him. And He knew all along that I was sick, what was wrong and how to heal me, for their sakes and He didn’t.

How do I reconcile that with God is a good God and God is Love?! And all the other wonderful things God is?

I just don’t know.

Fibro Frustrations

Fibro Frustrations

I have more Fibro symptoms if I get frustrated, and that frustrates me.

frus·tra·tion

frəˈstrāSHən/

noun

noun: frustration

1. 1. the feeling of being upset or annoyed, esp. because of inability to change or achieve something.

The thing about knowing how bad I feel, how I can’t do something well and knowing it’s never going to end is frustrating, heart breaking, and down-right daunting.

I have decided frustrations frustrate me. By that I mean getting frustrated bothers me immensely. It just causes me more frustration and it snowballs.

I try to take a step back and take a deep breath but nothing seems to help. Where is my calm?! I need some calm now! >.<

Amanda’s method of not sleeping …. Again!

[for BLOG TEN]

Amanda’s method of not sleeping …. Again!

I picture myself drawing numbers on a chalk board, I have to see the number to move to the next one. Tonight went like this: Okay, here is my...no that’s a hood of a Packard going under water with its high beams on....ok, chalkboard...why was I thinking of cars under water....never mind, chalkboard....Susan Smith! Grrr don’t get started, ok, CHALKBOARD! Now Onnnnnnnnneeeeee.... *sigh* don’t see it.one, one , one…good enough, its just the lines where my eyes moved, but I’ll take it. Twwwwooo, twwooo! Three, that three looks squished… Three, Three... I was cutting a rug down at the place called The Jug with a girl named ah Linda Lu when in walks a man with a gun in his hand he was looking for you know who, *waves fake gun around* he says hey there fella with the hair color yellow, what cha tryin’ to prove?! That’s my woman there and I am one to care that she might be off with you! EXCUSE ME! …  http://youtu.be/of5aylTtkPU

((This will change every time I try to get to sleep))

alt vid
http://youtu.be/SM3jgkChV6M

I’m afraid it’s starting again.

[BLOG NINE]

I’m afraid it’s starting again. =P

The all over pain and restless limbs and electric skin. *sigh*   

I was hoping it was tired. Just tired, but no. I have slept a lot and it’s still there. I want to go out and work on my class work or take a nap, neither of which I feel like I can do. I have started and stopped this several times already.

The rest of this is a few days later.

I put on 2 pair of socks, sweat pants, long sleeve shirt, and crawled under a thick quilt and electric blanket that was on. After a lot of sleep there I feel better.

I have also noticed that I start feeling bad if I don’t eat. So much for dieting. =P 

Random thinking doesn't help me functun well either. =P

Dropping Classes

On my way to class today I went by and dropped the 2 Public Relations classes. I could cry. I wish I could do all that I want to do. It's not just the pain and fatigue that slowly kills me, but it's loosing chances and not being able to do what I want to do. What normal people do. *sigh*

Meds, meds and more meds….

[BLOG EIGHT]

Meds, meds and more meds…. That’s another thing I hate about this life with Fibro; taking medicine. And I mean lots of meds to try to control the pain, fatigue and everything else that comes with Fibro.

One is making sure you take everything when you are supposed. Some meds may be daily, 2 daily or more. Then there is twice daily and the ever confusing 3 times a day.

Second there is how to remember when and how to take the meds. Take with food or not? At meal times or 8 hours apart or when? And once you know when, how do you remember when Fibro causes you to sleep/nap odd times, and be awake all night or not remember to eat.

Third there is when medicines stop working you have to get a new medicine and a new schedule. And then integrate that medicine into the schedule you may have only worked out last month or last week.

That is when you realize a medicine isn’t working, sometimes you don’t, sometimes the doc tells you the reason you are feeling XYZ symptoms is because your body has adjusted to a medicine.

Having a large number of medicines can cause this adjustment happen regularly through the meds you take so that you are never really getting the full benefit of the medicines.

I hate medicine, but I need them and I am relieved that I finally have them. But a magic wand would be so much more simple.

I am alone

[for BLOG SEVEN]

 

This was written a few weeks ago and is not how I am feeling right now but I wanted to share it because I feel it's important. 

I am alone.

I have Fibro.

I have known for 1.5 years. I have not been pain free for the past 27 years. Hurting and not knowing why, not even able to verbally express how I felt, what was wrong other than I was tired put a strain on my life. In fact it destroyed it. Demolished. Shattered. Humpty Dumpty was I.

Eventually my body couldn't fight the pain. It was too worn down and the pain was too much to handle. I was mostly bedridden. I could sometimes be encouraged to do something but I would suffer for days or weeks after.

My husband told me I "was not fulfilling my duties as wife and mother” because I "wasn’t cleaning the house and watching the kids". He put me out (kept my things though) and I was left alone, sick with no one. My husband and daughter had said they bet I wouldn’t make it a month alone.

I almost didn’t live. At one point the doctor did tests and said I was “literally starving” and that my body was digesting it’s self. I wasn’t surprised. I could barely lift a plate or glass of tea with 2 hands. How could I shop and cook?! I had to buy thin plastic plates to be able to pick up a plate to eat. Cooking was a frozen pizza while I rested as it cooked. And that was once a day. I couldn’t do any more than that.

I was so sick by the Fibro and my broken heart missing my family I could hardly lift my head. I missed seeing my children so badly that I was having hours of physical blindness.

The walk to class that should have taken less than 5 minutes took me 20 to 30 and I would spend all of class exhausted and resting for the walk back home.  I didn’t go out, I had no energy to.

The Fibro Fog was so bad it didn't take long for anyone who had spoken to me to avoid me. I don't have any friends, I was too odd. People thought I was special needs mentally. I am actually ... well I was very intelligent. Long ago. As a child. Now I can’t think of common words or forget what I'm talking about as I talk. I forget what I'm gonna say all the time. Not once in a while. All the time!

After checking on the computer what day it was, I would look at a notebook to see what I like to watch on tv that night. I couldn't remember. Even after weeks of the same show coming on at the same time on the same channel. I had my phone to alarm to tell me to get ready for class, what class and when it was time to go. Every day. Because even after weeks (months) of the same schedule I couldn't remember. Don't even ask me what your name is. I could not remember if my life depended on it. I have literally forgotten my own name.

I believe my brain was so overloaded with pain that nothing else could fit in there.

Who would want to spend time with someone who was in bed and tired all the time? (Of course had my family loved me, they would have gotten me medial help.) Who would want to spend time with someone who can barely walk? who cant remember your name after years of classes together? Who can't go out? Can’t do anything? Hurts all the time? Says random crap? Can’t remember everyday words? Who's family threw them away? How is that for an endorsement? My own child threw me away; put me out of her life and will never speak me to again. Yeah, who wants that person for a friend?

As I said: I am alone.

I am a Beast!

[BLOG SIX]


I am a Beast! and that's a good thing.

When my daughter was in high school and was impressed with how strong someone was she would say "He's a Beast!" 

Despite how weak I look being in bed for days or weeks, even months  at a time, I am a Beast. I fight pain and fatigue day & night. I have to live life under immense stress and some days I succeed. Some days I just survive the day and I am still a Beast. So those day I get out of bed and do anything are remarkable. 

Right now I am walking around with a broke foot and heightened pain. But so far I have made it to class and took some pictures for an assignment. Went to the clinic (and told them it was broke, they just confirmed it with x-rays afterward). I went to the store and got groceries. I climb 3 flights of stairs and I am a Beast. 

I didn't set out to be a Beast. This pain was thrust upon me. For decades I had no idea what was going on, but here I am, still alive and kicking...well when my broke foot heals I will be kickin again. lol 

But believe me, I wish I didn't have this pain,  it's not been a positive thing in my life in any way. Not even making me a Beast is worth it. I wish I had spent my life pain-free, Fibro free, Beast free. I wish I hadn't had so much pain I couldn't think straight. Wish I could have made better decisions, personally and professionally. I wonder what my life would have been like.  

Could I have been a success in a career that let me dress nice and meet smart people? People that I was able to converse well with. Would I be active in a sport or several? Would I do a marathon for charity? 

None of that matters because I am a Beast in this life I have. I won't ever get a chance to live that life I wanted because of Fibro that I didn't even know it existed. I just have to be proud that I am a Beast in this life I have.

I am a Beast, and *that* is a good thing.

I have a broken foot

I have a stress fracture on the top/outside of my right foot. Don't ask me how or when it happened because I don't know. It was sometime during the Fibro flare I just had. I was feeling so bad with the Fibro that I didn't care how bad my foot hurt. Sure I soaked it, even used Epsom salts, but the Fibro pain was worse... and all over. 
I felt like like I had spent a hot day running around an amusement park but with out the fun. There was a tingly exhaustion head to toe that wouldn't go away. I couldn't get comfortable. I couldn't think and my grades plummeted. 
I hate Fibro. I hate Fibro flares! They can be caused by something like doing too much, stress, weather or just happen randomly and you never know why. It's like every moment is Russian Roulette. You never know when it will strike, only that it will and it will take over what little life you had and wring you inside out. 

Boo is a super wonderful service dog

This is my service dog, Boo. He is a Psychiatric  Service Dog that helps me with my PTSD, Social Anxiety and Depression. He goes everywhere but class with me. So long as I get to class ahead of time and I am not in the halls when everyone else is, and I can sit in the front and pretend no one else is there, I do okay. But for places that are not a controlled environment like a store, I need Boo's presence. He has really saved my life and he keeps me moving with fetch even when I feel bad....maybe that's especially when I feel bad.

I hate Fibro!

When you are at the end of your rope, tie a knot and hang on! (Author Unknown)

[BLOG FIVE]

I don't think I have the strength to tie a knot. It's like everything is ending for me. No more financial aid so how am I supposed to live? I was barely making it with no frills and now I can't even make this month's rent, much less rent thru the semester and money for gas and toilet paper and such. 

I don't know what to do. I qualify for work study, but I can't work. I don't have the energy to make it somewhere each day and work for hours. I barely get to1 one hour class a day. If it wasn't for Student Accommodations I would fail out of school in the first few weeks. 

*sigh*

I hate Fibro.

I dont want to keep living in the condition Im in.

I don't want to keep living in the condition I'm in. 
Chronic pain. 
Pain everywhere.
Pain all the time.
No way to get comfortable.
No way to be comfortable
Nothing soothes.
Nothing relieves. 
There is no respite.
Even in sleep I hurt.
I dream of pain.
I wake up tired.
I wake up exhausted.
I wake up in pain.
I know I will do this again and again.

Fibromyalgia is a fickle thing.

Fibromyalgia is a fickle thing.
The pain can change.
One day, week, month, year, etc I could be feeling a certain kind of pain in one area, the next could be all over pain or a different area or different pain. 
It's not just a different "disease" from person to person, but symptoms change randomly. So randomly I cant predict it.
It is my new meds? the meds I missed? is it something I did? something I didn't do this week? the weather 200 miles away? a butterfly in Asia? Okay the last one is a stretch, but the others are not only possible, but have happened.
How do you deal with random jumps in pain?!
How do you treat something like that?!

Fibromyalgia is a fickle thing.
Except that the pain never goes away. 

Fatigue

[BLOG FOUR]

Fatigue.
Sounds non-threatening doesn't it? After all, how can being tired hurt your life, everyone gets tired, right?
Well, there is a big difference between being tired at the end of a few days a month, or even nightly than being fatigued every moment of every night and day. No relief. 
Then there is the extra fatigue that hit you like a BUS! and you crash and nothing much can keep you from sleeping because your body has had enough. You will sleep. You can try to fight it, but you will sleep. 
And when you wake up you will be tired. Still. Every time you wake up.
Tired when walking, cooking, doing laundry, resting, watching tv, sleeping, waking up. At no moment is there a "not tired" moment.
Tired and Pain are both like Chinese water torture. It will wear you down and drive you crazy. Fibromyaliga is water torture using pain as the water. Once the pain and fatigue start, it never stops. 

How the pain feels.

[For BLOG THREE]

Have you ever been to an amusement park and spent the day running around in the heat and riding rides and then on the way home feel odd and hurt all over and almost as if you were being touched by electricity? Well, that's me, any given time, all the time actually. That's my life on Fibro. The exhausting pain without the amusement park fun.

And that's just the basic pain, that's not if I do something, pull something, have a cramp, twist wrong, ect.... That's just how I feel. Always. But as for the other stuff, It's easy to hurt in other way, any way, I can move ... or not move, and I will hurt.

So when the back goes out [of place] which happens often cause my body is weak, the knees go, then ankles.... This past week has added a new pain because with all that I got to have my rib become displaced because the tendons are weak. oh joy (sarcasm) The pain was astounding. (not sarcasm)

So I either hide in fear of any little things making me hurt a thousand times more than it should, or I live a little (very little) and hurt oh so much more. But wait, hiding and not doing anything hurts. So yeah, I can't win for loosing. 

"If it weren't for bad luck, I'd have no luck at all!"

How can you hurt from head to toe?

Fibromyalgia (FM or FMS) is characterized by chronic widespread pain and allodynia [pain from stimuli that shouldn't cause pain].
Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness. Some patients also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling, and cognitive dysfunction. Fibromyalgia is frequently [not always] combined with psychiatric conditions such as depression and anxiety and stress-related disorders such as post-traumatic stress disorder. Not all fibromyalgia patients experience all associated symptoms.
 There is evidence that environmental factors and certain genes increase the risk of developing fibromyalgia – these same genes are also associated with other functional somatic syndromes and major depressive disorder.
Research shows the pain control system in the skin, spinal cord, and brain of fibromyalgia patients is overloaded, offering a reason for why you ache all over. In particular, immune cells that generally do not cause pain contribute to the flu-like fibro symptoms that make your whole body hurt.

Chronic Pain is like....

Chronic Pain is like.... 
Chinese water torture.
The person without it think you mean a few drops of water, 
but you know its a steady drop that can dig out ravines in rock mountains.

Fibro & Me

Fibro

I have had Fibromyaliga 27.5 years. 
My first attack of Fibro was the summer I was 18. 
I am 45 years old. 
I was diagnosed less than a year ago.
I have had at least 5 major increases.
I am crippled by pain to the point last year before my diagnosis I was starving to death because I was to weak from the pain to feed myself.
Over the years I was told I had depression, anxiety, bi-polar, and this may be my favorite: "Depression with out depressive thoughts"!
I have ever symptom Fibro has but 2 (one being a male problem) and one being Reynold's Syndrome which my mom has. (Yes, My mom has undiagnosis Fibro and Im sure her Father had it and we can trace it up his family tree. )
But having EVERY symptom a disease has where there is at least 80+ symptoms and there was no doctor in 26 years that could figure it out?!

Fibro and Anxiety

[Count as THIRD BLOG]

Because Fibro affects every nerve in your body it can be devastating to those who have more than a mild case, like me. I have had at least 5 major episodes of Fibro. Let me see if I can explain that.

If you think of Fibro as a body suit of pain, when I was 18 this suit was put on me. Later when I was in my early 20s another suit was added over that...doubling the pain. Over the course of my adult life I have had at least 5 layers of pain added to my body.

And this isn’t a mild pain, as anyone with Fibro can tell you. Normal pain is like one guy at a ball game yelling. Fibro pain is that guy with a megaphone, the entire cheer squad and the band making noise about pain.

I told my doc the other day that if the pain was noise is was like being on a navy ship where planes land and not having ear protection. It was that debilitating.

And it’s not just one area, it’s all over. It’s everywhere. There is no where I don’t hurt. Some areas hurt worse then others. I have a back injury with arthritis and degenerative disc disease, so of course that area hurts worse.

And now my 3 middle toes are going numb. And I don’t mean mild “going to sleep” numb. If the “mild going to sleep” numb was a teen age boy lifting weights in the garage, my numb is “Mr. Olympia lifting weights” numb. But there is “nothing [other than pain meds to hide the sensation from my brain] to be done, it’s just an effect of the Fibro working on the nerves for so long,” says my doctor.

The meds I’m on now give me some hearing protection, but I can still hear the pain. I can feel the vibrations of the noise; I know the pain is there, just under the surface, waiting for me to miss a dose of my meds, to over do an activity, for my body to adjust to a dose, for something to happen to allow that overwhelming pain to slam into me again.

Anyway, back to the purpose of this writing.

Fibro affects every nerve in the body with pain. Pain causes the brain to go into “Fight or Flight” mode. Meaning it pumps out chemicals that make you “revved up” or “scared” depending on how you (consciously or unconsciously) choose to think when you feel them.

This is why you sometimes “feel your stomach drop” when you stub your toe. Your body does not know the difference in “safe” toe pain and a serious injury pain until the brain has time to let it know. To the pain part of the brain, any & all pain means “Let loose the adrenalin! The body is under attack!”

This Pain-Adrenalin combination also brings another life altering symptom: Fatigue. The body can only handle so much adrenalin before it needs a break, but if you have Fibro, you don’t get a break. The pain is always there when you have Fibro causing the body to make adrenalin all the time. With no real rest. And ‘round & ‘round she goes.