Fibromayalgia cont...

I had a lot of feedback after my 1st post on this and people wanted to know more, so here it is.

My first post on this was fairly clinical and sketchy on how it affects me personally. Some of you wanted more details and info. There will be things I forget to put in this, but you'll get most of it.

Pain & fatigue are my two biggest complaints with this disease, which is pretty common. But besides that I have the following:

Stiffness. If I stay in the same position for too long, it's hard for me to move. It can really take a long time, and it's very painful, to change my position. Once I get up (off of the chair, or out of bed) and move around for a couple of minutes, I start to loosen up. Unless it's a bad day weather wise. Cold, wet days are the worst for me because I also have arthritis and when they're both flaring up I have a hard time. But any weather change in which the barometric pressure changes hurts a lot. 

Memory. Mine is soooo bad. I hate it. I can't believe Steph still lives in the same house with me. It must drive her nuts. I know it drives me nuts.

Hearing. Mine is very bad, and it's getting worse all the time. It's pretty common for Fibro patients to go deaf. That is, ultimately, going to be the worst part of it for me. You can learn to live with pain, and of course I'm on pain killers and muscle relaxers. They help. Sometimes. But unless they find a cure for this particular deafness, there will be no help for it. I don't mind the idea of having to learn sign language. I already know a little bit, and Steph's real good at it, so I know I'll be able to communicate at home. What bothers me is knowing I'll never again hear my daughters speak to me. I'll never hear Steph sing, or John, my son-in-law tell a joke, or be able to communicate with my grandkids when they're very young and only know how to speak. I LOVE music...I'll miss that A LOT. Ok, I just realized that that looks like I rank that higher than my kids...I don't. But I will miss it. I love watching movies and going to plays. I know I can turn on subtitles, and that will be fine, but it won't be the same. I'll miss the music and there's so much acting in a person's inflection. Plays would be extremely difficult. I've seen signers at many plays acting like subtitles, but it would be near impossible to watch them, and what's going on on stage.

I have a super comfy memory foam bed. I think that most nights I don't move at all. It has taken me several minutes to get out of bed. That happens a lot. And when I finally do I'm so stiff and hurt so much that I tend to walk with my legs perfectly straight. I can't seem to bend at the knee. Again, just moving around helps that.

I have a relatively new problem. For about the last year my arms and legs will just randomly jerk. It's the oddest thing. I'll be in the kitchen getting breakfast, moving slow and quietly because Steph's still in bed and her bed is right over the kitchen. I'll open the cupboard door and quietly take a bowl from the stack, then as I'm closing the door my arm will shoot straight out. That means I slam that cupboard door soooo hard. It makes me roll my eyes...and then I giggle. I'm not sure why. Probably because it happens a lot, but seems to happen a lot when I'm just starting my day. It makes me laugh even harder when I do that with the silverware drawer. They make a lot of noise in that little drawer when I slam it.

Fibromayalgia makes you feel like you have the flu. I'm not talking about what some people call stomach flu (is no such thing), I'm talking about influenza. If you've ever had, REALLY had it, you know how painful it is. I've had it 3 times, and every time I had a fever that went so high I ached everywhere. Everywhere!!!!! You can't get comfortable, you can't stop hurting. That's how I feel all the time. Then, when it flares up, I have charlie horses. Anywhere on my body. And I do mean anywhere. For years I stupidly said things like, yeah, but I've never had one in my back. Or, well, I've never had one in my arms. I've had them in my face, my neck, my torso, my hands, arms, legs, feet, I've even had 2 in my head. Both times I thought I was having an aneurysm. I felt unbelievable pain, like something sharp, hard, and hot was being driven into my head. Both times I saw white, and almost passed out. It was horrible.

Fibromayalgia is caused by different things. I used to have a neighbor who was in a car accident and she hurt her upper back, and ended up with it. It will never go away, but she might not ever develope it anywhere else. I've had it since birth, and it's all over my body. I hate that part most of all. I don't just get an ache here or there. It hurts everywhere.

That's what Fibro pain is. It never leaves you. And I hope and pray that none of you ever get it. It causes a lot of other problems for me, but this could go on and on, and I think this has answered all of the questions I've been asked.

Life with Fibromayalgia

I have a disease called Fibromayalgia. So many people have never heard of it. It's not that common. The best way, until today, that I've ever heard it explained was when I saw a commercial on t.v. The voice over said that Fibro (it's pronounced fie-bro-my-al-gia) is over active nerves that radiate pain out to the surrounding tissue.

It's actually so much more than that. You can Google it. You can find it mentioned in Medical books and articles. You can ask your Dr about it. And everything you hear, or read, will probably be true even if the descriptions are vastly different. There are over 100 symptoms to the disease. It's debilitating, but not fatal.

My daughter works with a woman who has it, and she found something on the net. She printed a copy for me, and it explains a lot of it. I thought I'd share.

Fatigue
Irritability
Brain Fog
Restless Legs
Overlapping Syndromes
Muscle & Joint Pain
You Never Feel Good
Anxiety & Depression
Loss of Control
Grief & Worry
Immune Dysfunction
A Lifetime Fight

They're all pretty much self explanatory, except for overlapping syndromes. O.S. are usually autoimmune diseases that either literally are 2 or more syndromes, or it causes you to exhibit the symptoms of 2 or more syndromes. I have a true O.S. because I also have Systemic Lupus Erythematosus.

I've had both diseases since birth, but we only knew about the Lupus when I was growing up. No one had even heard of Fibromayalgia.

Because of the Fibro, I have everything on that list, but I also have a little bit of brain damage to the portion that controls tolerance to pain, and memory. I can remember some things, from  many years ago, very clearly. I don't know why it works like that. For the most part my memory is really, really bad. I also am losing my hearing because of it. It's very common for people with it to go deaf.

My Lupus is in remission, thank God!, and since that is the one that's an autoimmune disease I'm very happy about that.

So, now you know a little bit more about it. There is a ton of info about them both online, if you're interested.

Thanks! And have a fibro-fog free day!!!

Crappy weather

So, when you have little kids you can have 1 of 2 crappy weather days.

The best is to have a snow day with the wind blowing, the snow coming down, and temps that are too cold to be out in. Every one is safe inside, and the order of the day is to make chocolate chip cookies and play games all day long. My girls and I had a lot of days like this and they have made wonderful memories. This would also sometimes happen on cold rainy days. I loved days like that! They are what make life worth it. Just the simple little things. Like your 4 year old coming to you with a dandelion. The first time you get flowers from your child is something you'll never forget.

Then there are the days when everyone's stuck in the house together and nothing goes right. Breakfast gets burned because you're suddenly having to pull one child off of the other before someone gets hurt. Then the kids fight over who has to wash and who gets to dry the dishes. Then they fight over "You didn't get it clean enough. Do it again!" Then they fight over where the wet dishtowels should hang to dry.

And the fighting goes on and on and by 8:30 you have a migraine. And it's ONLY 8:30. You live in a little house and there are few chances for them to stay away from each other, especially when they share a bedroom. By noon you're calling your mom at work to apologize for ever being born and wishing that you were a drinker. Of course, even if you were, there's no such thing as a drink big enough to make it through this day.

On days like this you think to yourself, many, many times, that you can't wait until they're grown and gone and you can have some peace and quiet.

Then they grow up, move out and you have a crappy weather day and you're too stiff and sore to do anything and you end up realizing you miss your kids more than words can say. I'm very fortunate. I have a 30 year old with a family of her own who doesn't even live in this country and I miss them something fierce! But, I have a 27 year old who decided to go back to college and she lives at home. Plus, thanks to modern day technology, I have a little camera on my monitor and can Skype with Sara and her family. It's wonderful! I love it!!!! Basically, I can still see my grandsons', daughter, and son-in-law almost anytime I want to. It's not the same as having them here, of course, but it's awesome! They will live all over the world in their lifetimes, but I'll still be able to see and talk to them. What a blessing!!!

So, on a day like today when the sky is gray, the trees are still, the temp is low and it's raining, grab your kids and tell them how much you love them. If they're too old for this (I'm speaking more about boys here), or they no longer live at home, make some hot chocolate, grab your kindle or a book, and sit with a throw on your lap and remember that it's days like these that are life. The holidays, birthdays and anniversaries are all very nice, but there are just a small handful of those each year, and many, many crappy weather days each year. Especially if you live in MN!!!  :) 

Bathroom Debacles

Alright. I don't know who's idea this was, but an aging bladder, not to mention bladder control, is NOT funny.

I live in a townhome, that has one bathroom. It's on the upper level. If I'm in the family room, or am doing laundry, I have to climb 2 flights of stairs to use the bathroom. About half of the time, I don't realize I need the bathroom until I stand up. Then, when I'm about half way there my bladder starts to talk to me. That's right. It talks. And can I just say this: It has no sense of humor, or tact.

I'll be up the first flight of stairs, and half way across the kitchen when it starts out slow, and quiet. "You're not going to make it. We're going to embarrass ourselves." That's always encouraging. Then, when I get to the bottom of the second flight of stairs, it raises it's voice a little and there's a sense of urgency coming from it. "You aren't in good enough shape to run up this flight. You might as well have grabbed the mop when you went by it!" or, my personal favorite "Well. You should just be thankful that no one is visiting. At least you're alone. Of course, anyone could come walking in at any time. I'm just sayin'."

I have other problems in the bathroom that are completely unrelated to my bladder.


Like, putting on make up. I have one big mirror hanging over the vanity. Then I have a medicine cabinet on the wall next to that, hanging over the side of the vanity. Now, when I was about 10 I got my first pair of glasses. I'm nearsighted. I'm so nearsighted that 40 years later, if the object I'm trying to focus on, without my glasses, needs to be about 4 inches from my face. That means that I have to fold my body in half and rest the upper part on the vanity, to use the big mirror, or I have to twist my body at the waist AND lean to the left, but just from the waist up. Either way, I'm ready for traction long before I'm done putting on makeup.

I get mascara under my lower lid and my eye shadow, which is a powder, ends up sprinkled across my cheek. My eyebrow pencil ends up highlighting areas where eyebrows never grew. If I use the big mirror I stand up after and realize I have to change my shirt because I haven't cleaned the bathroom yet and that little bit of toothpaste that ended up on the vanity is now on my shirt. Whitening it. Forever. If I use the little mirror on the medicine cabinet I can't do anything else for the rest of the day because I've put my back out.


In other words, if I haven't made my bed, cleaned the bathroom, washed the dishes I didn't do the night before, swept the kitchen floor, picke up the living room and done a load or two of laundry BEFORE I put my makeup on, I will get nothing done all day. The only problem with that is that by the time I do that, and make dinner and clean it up, it's time for bed, and it would just be silly to put on makeup. It's quite the dilemma.

Of course, the perfect solution would be to move into a rambler, and have lasic surgery done. Too bad I hate to move! I'll cover lasic surgery at a later date.