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.

Families, on Holidays

Hello,

It's been a while, so I figured I'd take a few minutes and get you caught up on what's happening in this 50 year old's life.

Winter is mostly over, and some days are very nice, which is a wonderful thing. I've noticed that the older I get, I have less tolerance to cold weather. My mom winter's in AZ, for about 6 months, and she will be home Thursday, barring any storms they might drive into. There have been a lot already this year, and there have been a LOT of tornadoes. By they, I mean mom and my sister-in-law.

Speaking of my sister-in-law, she does this every spring and fall. She uses her vacation weeks to fly one way and drive mom the other way. What a saint!! I did it once and thought I was going to die. I get motion sickness, and driving through the mountains is no place for someone like me. I digress...

I'm still looking for a job *sigh*, I visited my grandsons, Steph & I rearranged, and redecorated the living room, I've read a TON since I got my Kindle, and I've seen some really good movies lately. So, that gets you caught up. 

The main thing I was getting to is that when mom's coming home, that means that spring and Easter are coming, quickly, so it's time to do a little spit shining, and so forth, when doing the cleaning/preparing for Easter at my house. Some years we have it at the party room where my brother lives, but sometimes not. And, really, it doesn't matter if we're having it or not. I still have to super clean my house because my mom's coming over for the first time in 6 months.

This year is Easter at my house, and while I started some preparing for it, I realized a few things. First, and foremost is that I LOVE having people over, but my favorite is having family for a holiday. We frequently will also have someone who's not family, because they have nowhere to go, so for that day they're family. This year we're having a schoolmate of Steph's. Her name is MacKenzie, and she's from New York. Going home just isn't always feasible, and she's more than welcome here.

Steph & I live in a tiny little 2 bedroom townhouse, but we put in a family room in the basement, which is mostly finished, and between that, living room, and kitchen, we can always make do. Every time we get together we have way too much food. But the food is VERY good. That's the second thing I realized. The food is always so good! My mom and my sister-in-law are very good cooks!

Also, every time we get together we play a lot of games. There's usually a few people in the basement playing SceneIt of one kind, or another. We have several of them. And at the kitchen table you can find people playing 13, Pictionary, Scrabble, Parcheesi, Upwords, Yahtzee, or Boggle. There are many more, I just can't think of them all.

The third thing I realized is that because of the game playing, we spend a lot of time laughing. I love that most of all. I'm related to a lot of very funny people, and we always have a good time when we get together. We can just sit and talk and we have a good, funny time.

Sometimes my brother brings over his dog, which I also love. This is a good thing. A very good thing because Stella is as sweet as they come. She's such a cute, and good little dog. We love her because she's family, too.

This year my nephew and his wife are coming over, which is also a good plus. They're a lot of fun to hang out with.

But, the very best holiday is any holiday when Sara, John and the boys can be here. I don't care which holiday it is, I just love it. It reminds me of when the girls were young and right around the time of the gloaming, my kids would be in the house. Every family member would be here, and everyone was safe. I don't really know how to describe the feeling...I just love it, and having them here for a holiday brings that feeling back. I have my daughters, my son-in-law, my grandsons, my mom, my brother and his family here and life couldn't get better.  I love being with them all.

My brother and Patty frequently host holidays at their place. She has a party every 4th of July, and every New Year. We get together early, we eat way too much, really good food, we play games, we visit, we play games, we eat some more and see fireworks. These parties are not family only. They invite a lot of people and it's like being with extended family. Some of them we've gotten to know quite well, and it's always nice to see them.

I feel bad for people who have no one to spend their holidays with. I have an older brother who moved to AL 27 years ago, and the first few years, before he was married, he was invited to the homes of his boss or a friend for the holidays and I was always very thankful for that. So, I figure what goes around...someone who's alone is always welcome here.

I feel very blessed. We've lost one brother, who moved away, and my dad, who passed away. But I still have a lot of family. People around me on holidays who know me well enough to know they can bring a stranger with them, and that they have to bring chocolate to my house. Otherwise, no egg bake for them!!

Aging and teeth

My poor mom had full dentures, top and bottom, by the time she was 25. I remember growing up, feeling so sorry for her. It probably went a long way towards me keeping good dental hygiene habits. However, despite those habits, I ended up with gum disease when I was 18. I had to get 5 teeth pulled, and braces which I wore for 2 years.

Over the next several years I had 2 root canals, and 1 little cavity. My teeth were in really good shape. They were all my own, and dentists always commented on how nice they were. I got them cleaned regularly, brushed and flossed a couple of times every day, and twice a week, for many years, I rinsed with peroxide and brushed with baking soda. My teeth looked really good. They felt good, too.

As my root canals aged, about 15-20 years, they got brittle and they broke. Right at the gum line. So, I had two gaps in my teeth because there was no way I was going to get implants. I didn't have the money, plus they both were in the back, on opposite sides of my mouth so I figured no one would ever see the gaps. Little did I know that was the beginning of the end of my nice teeth!

I inherited a lovely habit from my dad. It's called grinding of teeth. Otherwise known as "What is that hideous sound?!?!" I'm not certain, but I think it may have contributed to the end of my marriage. If not, it certainly must have made it easier, to make the decision, to call it quits!! Personally, I've never heard it but my mom has said it's the loudest, grossest sound she's ever heard come out of a human body. She hated it when my dad did that.

Because I had an old silver filling in a tooth next to one of the gaps, and I started grinding my teeth, I ended up having a tooth pulled yesterday. Those old silver fillings are a little soft and the grinding pushed the filling farther into my tooth. The only problem with that is that the filling has to go somewhere, so it pushes out against the sides of the tooth. Which caused cracks, which caused the tooth to break. Who would think they'd break a tooth while eating chicken wild rice soup? Certainly not me. But there I was, in the Denver airport, waiting for my connection and was suddenly chewing on something hard. I knew it couldn't be right so I took it out and there was 1/4 of a molar. Made me think twice about the soup! And, after the second thought, I decided not to finish it. That might have been one of the best decisions I make all year!

When I got to my destination (Costa Rica) I told my daughter and son-in-law about it and then pretty much forgot about it. But a few nights later I must have been grinding, because I woke up with a lot of tooth pain. She made an appointment for me with a dentist down there. Unfortunately, I couldn't see anyone until the day before I returned to the states, so there wasn't a whole lot she could do for me.

As it turned out, I had another tooth, right below the newly broken one, that I had broken a couple of months before. I had not done anything about it because I didn't have any insurance and it only hurt a couple of times and rinsing with peroxide took care of that right away.

Eventually, they both started giving me problems so I made an apt, but the day of there was a bunch of ice on my car, and the roads, and we didn't get up early enough to still make it to the apt on time. So I rescheduled and I have to say that those last 3 days before my apt were miserable. I had a lot of pain, and to exacerbate the problem, I was grinding my teeth the night before. I woke up in so much pain that a vicadin, Anbesol, and ice didn't stop the pain from increasing. I've never been so happy to see a dentist! He pulled the badly broken tooth, fixed the other broken tooth, which included drilling a cavity in it, drilled a cavity in the tooth next to that one and pulled an old tooth chip from one of my broken crowns. Zoikes! It sounds like it was a lot, but let me tell you...I feel much better today than I did yesterday before he did all of that!

So, the moral of the story is, if you have enjoyed healthy teeth all of your life, don't relax your oral hygiene habits when you get older. They actually need more care then. Eat healthy (which I can't say I do), floss and brush at least 2 times a day, try to stay away from sugar and carbonation, and keep regular 6 month apts for cleaning and exam. You may save yourself a lot of pain.

Now, I'm going to take a pain killer and go enjoy a book. Of course, I'll have to read it again later, because I don't remember much when I'm on Vicadin, but that's ok!

Costa Rica, cont. I swear this is the last one

Right. Per usual I forgot to put something important in my last blog. I should keep a list!

If you're interested in seeing clips of the "talent show", just google Frontier Flight 2025. You'll be able to see it in YouTube, or on our FB page.

That is all.

I think.