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An update of a few things

I called my FNL yesterday. He sounded good. I was so glad to hear he was in good spirits. He said his pain wasn’t so bad and he is drinking ensure everyday like I asked him to do. He said his appetite is great and he has only lost ten pounds so far. He lost that due to diarrhea. The chemotherapy is causing it. They told him to drink Imodium to prevent it next treatment he has.

There is so much going on in my life right now. It almost makes me feel nausea. I feel at the verge of throwing up. Ever have that feeling?

I have kids to take care of. A home to keep up, a husband to keep happy, medicine to remember to take, doctor appointments out the yin yang to keep, yard work to try to get done little by little, flowers to put out for this season, my brother says something is wrong with his blood work he had done, my uncle just had a stroke, my mom keeps getting pneumonia, my fibromyalgia seems to be out of control, I’m not sleeping well, I’m trying hard to lose weight and I am not winning that battle! I’m falling back into depression, and I can’t finish my book The Seed Of Infidelity. WOW that is a lot I think. Oh and sometimes I forget to eat through the day.

I’m so tired. I can’t do this blog anymore right now….

Fatigue becoming unbearable, leg twitches are worrisome…MS?

I don’t know what to do about my fatigue! It is getting unbearable. I am so tired I can’t get anything done through the day. Today I was lucky to have gotten my shower. I’m drinking five to six cups of coffee a day, at least one can of mountain dew sometimes two cans, and it just isn’t helping either.

I’ve had this burning in my arms for three days now and today it was the worst. I can’t even lift my arms above my head without severe throbbing pain and burning sensations. I also have had tingling again in my toes and that is very worrisome to me. I also have had a lot of leg jerks today to which also has me worried.

I don’t know what to do anymore to ease my pain and fatigue. I just want some comfort. Right now it is so hard to even keep my eyes open I’m so damn tired. I have to post this though. I have to journal this because my memory is shit.

I can’t remember shit anymore. It’s getting very bad. I have a hard time remembering to turn oven burners off, where I set my coffee, what bills need to be paid, where I put my purse, etc.

I am going to bed very soon though because I just can’t go any longer.

I needed to vacuum today, didn’t get it done. Dishes need to be washed, didn’t get it done. I needed to dust the whole house, didn’t get done. I wanted to hang my dining room curtains up that I just bought a week ago, that didn’t get done.

You know my feet even hurt! WTF! The top of my feet hurt to the touch, the bones are so sore and I HAVE NO IDEA WHY! It hurts to walk. Crazy symptoms are appearing out of nowhere these last few months. What the hell is going on I think all day long. What could it be that they haven’t found now? I know it isn’t all fibromyalgia symptoms. Leg twitches and muscle spasms are not known to be a fibromyalgia ailment. I have been having leg muscle spasms, and they turn up in my arms, and even my back by the rib cage! My symptoms do however show up under MS when you start researching the illness.

I mean I am not worried about having MS. Worrying does no good. I just want them to figure things out so I can find some relief to what the heck is going on with me now. I hope this new neurologist is a good one and that she cares to really look into what these things could be. I have an uncle with MS so having it wouldn’t surprise me one bit. I’ll just have to find a way to live through it like I have with the nerve tumor in my back and the fibromyalgia I have been diagnosed with.

The leg twitches are driving me crazy! You know how embarrassing it is to be sitting on your couch with company over and all the sudden your leg just jerks? It is pretty damn embarrassing for me and worrisome…I am beginning to think I may have MS indeed. I just want them to find it, diagnose it, and give me medicine to help me if that is the case. I’ll have to figure out how to live with it like others who have it, it won’t be easy I am sure, but I am a survivor so dish it out I say. Thanks for reading along. I appreciate you all greatly and I wish you the best in your life, and I pray you and your families are healthy.

Well I’m off to sleep before I pass out on this keyboard. I’ll keep you posted when I can with what is going on in JustOrdinary’s world of total health hell! LOL

Until next time…

Be safe!
JO

Battle day with fibromyalgia

Today was not a good day. It started out like it was going to be a good one but by mid afternoon I had to succumb to the major fatigue. I took a nap in hopes that when I got up I’d be better, but that didn’t help at all.

I even ate lunch when I got up. I was thinking it would help me out with the fatigue. It didn’t help me out at all.

I went from feeling fatigued, to hurting all over my body. My legs were weak today, had a headache come after lunch, and I just don’t have the energy to be up going. I hope tomorrow is a better day. I have some laundry to catch up on and I want to finish writing more on The Seed Of Infidelity.

It is so hard when I have days like this. I am thankful my husband came home early today; he helped with the kids while I just stayed in the bedroom under the covers in my lounge clothes. He also took care of dinner for me because I just couldn’t do it.

Fibromyalgia really sucks!

Living With Fibromyalgia

Living with fibromyalgia isn’t easy. I have a neuroma in my back, which makes it even harder. I believe the tumor is what brought on the fibromyalgia. Experts believe that an illness or injury brings on fibromyalgia in the patients who come down with the illness. Some experts believe that people are genetically inclined to come down with the illness.

It could be either way with me. My family history is full of illness so it could have predisposed me to the illness fibromyalgia. I believe my genetics have more to do with both.

One of the hardest things for me to adjust to is limiting myself. For those of you who don’t know how fibromyalgia works let me explain a few things.

Fibromyalgia affects me everyday but every day is a different level of pain throughout my body. It doesn’t just affect one part of my body either. It affects my entire body. Fibromyalgia also works in flares. Each flare is different for each person and each flare will also vary in pain level.

When I have a flare, it usually is real bad. My flares make me feel as if I have come down with a bad case of the flu. I will have pain around my joints, and my muscles will burn like they are on fire. My legs will feel like they are weighed down with lead. I also get headaches with these flares sometimes and they are migraines. Unfortunately though I have a constant headache everyday but they have become something I have learned to just live with.

So now back to the hardest thing that I had to learn to adjust to. On a good day I have higher energy and my body feels almost normal. When I say almost normal I am referring to how I felt before all these health problems came about. It is hard for me to not over do myself. That is the most important thing to learn if you suffer from fibromyalgia. Even though you feel great and are able to do the things you want to do on the good day, if you over do yourself, the next day could be a very bad flare day. It is important to conserve some of that good energy instead of using it up in one swoop.

Another thing I’ve had to learn to do is have a routine bed time. Except on rare occasions I have set myself up to where I go to bed no later than midnight. Not to say I don’t go to bed earlier because many nights I do. I have just made the cut off midnight just so I have a limit set that I can live with the next day. If I stay up later then midnight, the next day is a very bad flare day for me every time. Sometimes it will take me two days to make up for one night of not going to bed before midnight. I have come to realize midnight is the latest my body can tolerate well enough to function the next day.

Most people with fibromyalgia seem to be helped with heating pads, hot tubs, and hot showers. I do take pretty hot showers, but usually right afterwards I got to get into bed because my legs will feel like Jell-O. That is not a normal symptom of fibromyalgia so I have to be checked for MS next month by my new neurologist.

I do find great comfort in my neck wrap. I heat that sucker up and it is like heaven touching my shoulders and neck area on tough days.

I have weakness in my arms and legs, which again are not normal symptoms for fibromyalgia so that is why the new neurologist wants to check some other things out in myself.

Fatigue is very bad for someone with fibromyalgia. My fatigue is tough to live with too. When you get tired going from one room in the house to another you know something isn’t right. Fatigue has a lot to do with the sleep disturbances fibromyalgia patients have. Most patients with fibromyalgia fail to get the restorative sleep stage through the night. Experts have found that when REM sleep begins for a person with fibromyalgia the brain has activity that begins which gives the person a feeling of being awake in the middle of night. It isn’t abnormal to wake up many times of the night if a person has fibromyalgia. I have a HUGE problem with my sleep. Right now I take stuff to help me sleep, but I am going in for a sleep study to be sure I do not have sleep apnea.

Getting diagnosed with fibromyalgia is a great hurdle for most people who actually do have it. It took me almost two years to figure out what was wrong with me and still today there are hints that I might have MS on top of fibromyalgia. It is hard to find because there is no blood test, MRI, or other diagnostic test to prove you have it. A doctor has to do an elimination process of other illnesses that fibromyalgia mimics. The two big ones are lupus and rheumatoid arthritis. It is important to be your own advocate too where your healthcare is concerned. Don’t be afraid to ask questions about suspected illnesses you might think you have that seem to be a lot like fibromyalgia. A good doctor will listen to you and take your concerns very seriously. If they are familiar with fibromyalgia they know the difficulty in diagnosing it properly.

IBS, irritable bowel syndrome, is not something I like talking about but it is a HUGE problem with most fibromyalgia sufferers too. This is why diet is a crucial part of adjusting to the illness too. They have to bring more fiber friendly foods into their diets so to avoid any major problems concerning the bowels.

There are many other things that I suffer with concerning fibromyalgia but at this point and time I just don’t have the energy to finish up with those things.

I have been living with fibromyalgia now for almost four years. I have only had a diagnosis for the illness about two years now. There is no cure for fibromyalgia so I will suffer with this for the rest of my life.

If there was any advice I’d give to someone newly diagnosed with fibromyalgia it would be to pace yourself every day, and be sure to do things for yourself to make your illness as easy to live with as possible. That will require some dedication to yourself that you may not possess. It may require you to finally put yourself first in situations you normally would not, but my advice is to do so. Not only do you deserve it, but also you will definitely need it.

The Abusive Relationship of Fibromyalgia (*Some strong language*)

This is a relationship I can’t leave. I will have FMS for the rest of my life. I have nerve damage that doctors believe brought on my severe case of FMS so the future does not look bright for me getting rid of this illness.

I had to see my doctor a week ago. She increased my dose of cymbalta hoping it will help with pain. I go back in December to give her an update on how it has done. I found out I have an ear infection again too. Strange but hopefully the antibiotic will take care of that and my sinus problem.

Oh how I am dreading winter coming. I have so many bad days so far and it isn’t even winter yet! It has only been down to the 20’s and 30’s for low temps here. If I can’t handle that what will I do when it gets below zero?!? I am very concerned about this.

Fibromyalgia beats me up often. I’d call the cops but they got no remedy. Look, you have to try to have some sort of sense of humor when dealing with something so permanent and debilitating. If I didn’t try to have some sort of humor some of the time I would go nuts.

I have been having very bad headaches for over two weeks now. The headaches are the reason I went into to see my doctor in the first place besides getting refills on my scripts. They are not the same type of headaches I use to get. I have always gotten migraines. They started when I was a kid and never stopped. I have just dealt with them until I got on topamax. That medicine given to me for my tumor pain seemed to have helped with keeping the migraines at bay. Well, until now.

I was getting dizzy spells with them which was pretty scary. The ear infection seems to be the reason for the dizziness. That has subsided. I still however keep getting the headaches. They start out just bothersome. They just linger around. It feels like my entire head is in a vice and at any second someone is going to tighten it and that is when the shooting pain comes. The shooting pain brings the migraine full force. I have the lingering pain everyday. It starts usually after I have been out of bed for a couple of hours. I have no idea what is triggering this.

My doctor said if they still hung around when I came back in December she’d do a scan of my head to make sure things were ok up there. I really think it might be linked to my sinuses somehow. I’ve had problems since high school.

I weighed in there of course and almost had a heart attack! I just don’t know wtf to do about my weight. I can’t exercise due to the tumor, and the diet shit just doesn’t seem to be enough. It seems that when I hit age 30 my body said fuck you bitch the pounds are not going anywhere! I have to figure something out very soon though or I will end up in a place I don’t want to be in…a place I can’t live in…

Friends and family say things like, “You don’t look big.” Or “You’re tall and the weight looks good on you.” And “You look healthy with the weight on.”

Sometimes I feel like screaming. “I AM FUCKING FAT AND 30 POUNDS OVER WEIGHT! HOW IS THAT HEALTHY FOR MY BODY AND BACK?” but I don’t scream. I bite my tongue and say yeah I guess you are right. I don’t want to hurt them. I know they mean well. I know they probably believe the things they tell me. They just don’t understand the situation I am in. Truly they don’t get it. I don’t think anyone understands it but me. This is something I am alone in.

My husband gives me advice like, “Drink water. Stop eating candy and snacks.” That is GREAT advice but one of those I can’t take. I have changed on the snacking, chips, and candy. That is pretty much over. Water however won’t happen. I can’t drink water. I know that I should cut out the small amount of soda I drink. That will help a little I guess. It is empty calories I am taking in. I hate diet soda so I won’t switch to that. I am afraid to just stop drinking it due to caffeine intake. Without a certain amount of caffeine my headaches get worse. I drink more coffee then I do soda though.

This is a dilemma I have to get a hold on. It is really dragging me down with depression and stress. I am becoming compulsive over it.

My muscles have been burning, aching, and I wake up everyday stiff as a board. If it weren’t for my lyrica I couldn’t make it through my day. It really has been a great drug for me. If you are suffering with FMS and haven’t been given lyrica perhaps you should ask your GP to try it out. It might make your days a little easier.

I have been on lyrica for a year now and it doesn’t help completely with every symptom but it certainly has made more days easier then it was before I was on it.

Well until next time, take care and thanks for reading along.