I'm Not Lost

I have to admit, I've had some days, okay, weeks that have been pretty sucky in the past month or so, but seriously, I am feeling better. Like, really better. No, no, no... I don't think what I've experienced is a "cure",  but I wish I had gone to the new rheumatologist long ago. Like last year when my friend, KH,  told me to give him a shot. Not literally, of course.

The road hasn't been without potholes, some you could lose a VW in, but I'm getting there. As a matter of fact, today, August 1, 2014, I did not take ANY pain medication until 10 PM.  That's right, at night! That's 2200 hours for you military minds. I didn't just lay in bed all day, either! No, sir! Steve was gone until about 12:30, so I did take my sweet time getting up today. It was about noon, but I stayed up late reading, so I slept until 10, got up, let the dogs out, and then went back to bed to read until he got home. You have to admit, bed is the most choice place to read. It's my favorite place...

After Steve got home I got dressed and we went to the company store. We got some awesome deals... The Banquet cheddar broccoli potato bake, which I love, had damaged cases for $2.00.  Oh yeah... 24 for $4! The lowest price I've seen at the store has been 89 cents each at Target a few weeks ago; usually $1.00 each at the Wal-Mart Marketplace. We also got six 3 - packs of Healthy Choice frozen yogurt, strawberry, blueberry, and raspberry. I love that stuff!

After we got home we unloaded everything and put everything in the freezer, then we went to Tractor Supply for dog food, then to Wally World looking for a part for the vacuum sealer, then home. We hung around the house until a little after 6, and then went to a fireside at the Mormon Trail Center where they were showing the movie, 17 Miracles. It was an amazing, testimony strengthening movie about the Willie - Martin handcart company, which traveled to Utah in 1856.  It was a very inspiring movie, but also very sad. The next time I feel like my life is impossible, I want to remember the hardships these people went through and what an amazing amount of faith they had that  God would not desert them.

Yes, people died, but not because God didn't love them or didn't hear their prayers; but because they had so much faith their burdens were lifted so they could return to Him. The miracles that kept the rest of the company alive were just that - miracles. If I had been watching the movie at home, instead of with about 200 other people, I would have cried a lot more than I did. Awesome, awesome movie! This is one movie I want to see again. I must own it!

Now we will see how I feel tomorrow. I did take one of my old pain meds when I took my bedtime meds. I wasn't pain free and I was too uncomfortable to fall asleep, but I feel GOOD!

We got to see Sister Tune (Tun-ay) tonight, which was wonderful! Sister Winterton and Sister Jensen (Jenson?) are going home next Thursday. I'll miss them even though they haven't been in our ward for a long time, they were sweet girls who I enjoyed having in our home.
And now?

Goodnight!

I borrowed this from someone else - but it defines my life too.

I’m not taking credit for this letter, I did not write it, I found it online and sent it to everyone I know to help them understand what I was going through. I wish I knew who did write it, I would love to give them the credit here on my blog! (If anyone knows, please let me know and I’ll be more than happy to post the credit!)

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!

In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.

Have a nice day!! (ROFL),




10 best things about Fibromyalgia

(from Zazzle.com amazing website of super cool products)

I save money on magazines. With brain fog, I can’t remember what I just read!
I am a cheap date. No alcohol, no dessert and I still feel drunk or hungover.
On ‘good day’s I feel wonderful. Other people need a much better day to feel that way.
I am easy to find…I’m either at the Dr’s office or at home.
I never have to make my bed because I’ll probably be right back in it.
I have acquired a great lounging/sleeping wardbrobe. I rarely get dressed as nobody ever sees me.
Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up!
I feel smarter than my Doctors…all they say is ‘I don’t know’
With short-term memory impairment I can hide my own Easter eggs and Christmas presents.
Before you Judge
By fibrorelief
This is not my own article but one I’ve gotten from FMS Community at

http://www.fmscommunity.org/lettertonormals.htm and felt it should be shared because it’s so true!

There are the things I would like you to understand before you judge me…

Please know that being sick doesn’t mean I’m not human. I may spend most of my day flat on my back and I might not seem like great company, but I’m still me stuck inside this body. I worry about school, work, family and friends and I’d still like to hear about yours.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable but it will pass. I’ve been sick for for so long that I can’t afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I’m happy, it does not mean that I am well. I may be in pain and sicker than ever.

Please, don’t say, “Oh, you’re sounding better!”.

I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes, doesn’t mean that I can stand ten minutes, or an hour. It’s likely that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move, but with Fibromyalgia it gets more confusing.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.

Please don’t attack me when I’m ill by saying, “But you did it before!”.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct – if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.

Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.

If you read this and still want to suggest a cure, submit it in writing but don’t expect me to rush out and try it. If it is something new, with merit, I’ll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you – people who are not sick for many things but most importantly, I need you to understand me.

The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author and give credit to FMS Community and link back to the original site. Thank You.

Sha

Company picnic - a day at the zoo

The weather was so nice today - cooler than it has been and not a cloud in the sky. I thought it would be the perfect day for the ConAgra picnic and a day at the zoo. I was right, but apparently 20,000 other people thought the same thing. Seriously. I knew we were in trouble when we got to the 13th Street exit of the interstate and cars were backed up the entire length of the off ramp. But then I remembered the 24th Street exit was closed so that was probably the reason for the long line. Oh hell no. Apparently everybody and their uncle (and all the kids) decided it would be a nice day to go to the zoo. So, along with heaven only knows how many employees of ConAgra, the zoo was THE destination today. We left home about 10:30 and there was no parking anywhere close to the zoo. They only have about 20 handicapped parking placed to begin with and those were full of course. Steve dropped me off in front of the gate and went to park. About 20 minutes later he showed up. He had to park on the west side of the old Rosenblatt parking lot and clear down to the north. That's about as far as you can possibly go to park. Like somebody wants to park half a mile away and then traipse all over the zoo and then walk back to the car. Stupid. They need to have shuttle buses or something. Steve asked if I wanted a wheelchair, but I would have felt like an idiot, so I said no. Ha ha ha... Wishing now I would have said HELL YES! It costs $8 to rent a wheelchair from the zoo or $22 for a battery operated scooter. I would have taken the scooter, but I knew he wouldn't want to fork over that much money.

It's only been about 2 years since I went to the zoo last, but they've made some major changes - I couldn't get oriented once I got inside to save my life. We started with the Desert Dome, which is really neat and usually I like to go in there, but today it was so packed that half the time we were just shuffling along with the crowd. We did get some good pictures, but it was just too crowded. I'm not a big fan of crowds anyway and I was just getting antsy to get back outside. We did't even go into the Creatures of the Night exhibit, I had had enough of people by the time I'd been there 15 minutes. I wanted to see the Madagascar exhibit, but we made a wrong turn and ended up in the monkey house. Monkeys aren't that exciting, so we didn't stay long. Ended up going to the train depot and taking a train ride. I can't believe they can seriously charge $5 for the train trip - glad we got free passes. I wanted to ride the new Sky-- Whatever they call it, those little cars that go along a cable... I love that ride at the Iowa State Fair, but when we went by the entrance there was a huge line, so we didn't even try going

After the train ride, we walked down to where the food part of the picnic was being held. The food was okay. They have hamburgers, hot dogs, and grilled chicken, potato salad, fruit salad and then Snack Pack pudding and Healthy Choice ice cream for dessert. It was okay, but nothing fancy. I had a hamburger and then filled the rest of my plate with fruit. Not much for potato salad that's been sitting outside for heaven knows how long. (Probably not long, by the size of the crowd, but still...) Of course all the picnic tables were full, so we went over by the seals to eat. I love the seals!

I was ready to go by then. We had also gone through the Aviary, which used to be a bridge over a small lake with lots of goldfish, but now is about a 6 block walk where the fish used to be (never did find out where the fish went). The flamingos were really pretty, but they were also pretty stinky, I was happy to leave that behind. I understand where there are animals there is going to be animal poop, but it was really bad. I just held my breath and walked as quick as I could. Nasty. Anyway, we got done eating and waited for the tram to take us back to the zoo entrance so we could leave. We just barely missed one, the next one was full, and the tram stop was in the sun, so rather than wait for another we started walking. Mistake. I love our zoo, we have a very nice one, but I can't for the life of me figure out why both of them have to be at the top of a hill. I was seriously hurting and in tears by the time we got out of there. Between walking all over the VA Home grounds on Thursday and walking for 3 hours except for a train ride and eating time today, I've had enough. My body is screaming at me tonight. To top it all off, when I was coming down the stairs by the seals, I took a huge step down onto my right ankle and came down hard with a small twisting motion, so that's hurting too. After today I really miss the old ConAgra summer picnics - each division used to have thei own picnic and they'd rent FunPlex for the day. It was great. I used to think those were crowded - I was wrong! (Mark you calendars.... That doesn't happen very often... Ha ha ha...)

That's about all we did today. The missionaries came over for awhile after we got home. Then I thought about taking a second shower today, but I really didn't think I could stand that long. Legs are very sore tonight - just wait until tomorrow! I decided to take a whirlpool bath, which would have been great if the whirlpool had worked, but the circuit breaker had tripped and I didn't find out until I was already in the tub. I hate when that happens. So I just took a regular old bath. And now I'm going to go to bed. Tomorrow may be a muscle relaxer day. I can feel my back muscles just twisting up tonight. I wish I had enough sense to know when something was going to be too hard for me and just not do it. One of these days I'm going to learn to just say no - and screw the consequences. I did have fun, but it would have been more fun if the pain had been a little less - and I don't have anyone to blame but myself. I didn't want to take my purse with me, so I took my pain pills out of my purse and then forgot to take them with us. I didn't have my first one until 3:30. Way too late to do much good, I had already done too much.

Hurricane Irene is tearing up the East Coast, from North Carolina clear up into Canada. It should hit New York City tomorrow and that should be very interesting. They had a bad storm a couple weeks ago with over 10 inches of rain and now 100 mph winds and up to 15 inches of more rain is coming their way. Holy buckets, Batman. Glad I'm sitting here in my nice cool dry house! I'm praying for my friends who live back east. It's ugly - already 8 storm-related deaths. Hopefully, it won't get any worse.

Guess that's it for tonight. I have more thoughts, but I think the Ambien may be working.....

The Good, the Bad, and the Ugly

All in all, yesterday was a good day. I totally spaced off that I had to be dad's chauffeur for a doctor's appointment, and he called to wake me up at 9:30 for his 10:30 appointment, but I just tossed on some clothes and we made it without too many laws being broken. I thank God every time I have to go to dad's house for the Dodge Expressway. Dr. G was very pleased with dad's good mood and that he seemed to be doing a bit better. I am too, I think. When he has good days and acts like dad again, it's hard to know that he'll be moving to a nursing home in the pretty near future. I feel like the bad daughter when I think about it.

While we were still at the doctor, my friend Nancy called and asked if I wanted to meet for lunch at Big Fred's at 1:30. Great idea! I had a couple ideas I wanted to run by her, to see if she'd be willing to volunteer with me in keeping grave sites clean and maybe restoring stones if families requested it. Steve got off at 1:00, so he met us there, and Nancy brought her husband, Craig, so we had a really good lunch. Spent 2 hours talking about genealogy and cemetery cleaning, and all that good stuff. Dad has wanted to go to Big Fred's for lunch too, but we got done at the clinic before noon and I didn't want to sit there that long - so I took him to Bronco's and he was happy with that. It kind of irritates me that Missy was home all day yesterday, but she couldn't take him - at least take him to my house. It's 30 miles round trip and my husband/boyfriend/whatever doesn't put gas in my car or pay my repair bills if the car breaks down. (Okay, that's a moot point since I have a 100,000 mile warranty, but you get my drift.) When I got home, I called India and we had a good chat - and that was the end of the good part of the day.

By 6 o'clock yesterday the aches had hit me pretty bad and my left wrist was so sore I couldn't hardly move my fingers. I haven't had that kind of joint pain for a while, and I haven't missed it. Then the rest of the body aches set in and that was the end of me for the rest of the day. I spent the rest of the night trying to get comfortable. Took my Ambien at 11 and was still wide awake at 1:30, just very uncomfortable.

This morning I woke up feeling pretty good. Folded 3 laundry baskets full of clothes and put them away and was thinking about going to the store when I felt the first aches coming on. I jumped in the shower, only to find that it hurt like heck when the water hit my skin, that may have been the shortest shower - ever, but I did take one! Steve power washed the house today, it really really needed it - and it looks much better. I thought I might run to the store and then make chicken enchiladas for dinner, but thinking about it was as far as it went. I ended up sleeping or laying down most of the day. I finally got up about dinner, but still don't feel worth a darn.

We did decide to go to the grocery store after Steve ate, that was kind of creepy. We stopped to get some gas and noticed there was a lot of traffic on 90th Street, and when we got to the store, I wasn't sure I wanted to get out of the When we came out, the parking lot was clear, but the traffic was at a standstill as far as we could see on 90th Street - I wonder what was going on. We went to McDonald's for an ice cream cone and by the time we came back home, 90th was clear. Odd. If I had been alone, I'm not sure I would have gone in the store, it was very unsettling since I've been hearing all kinds of news about the flash mobs and the riots that went on at the Wisconsin State Fair.

Kind of sad Magann didn't call me about shopping today, although I don't think I could have worked up the energy to go. I'll have to call her tomorrow, because I really want to make the gift bags for Hailey's party, even if I have to buy the stuff. I'm feeling disconnected from Hails since I don't see her very much any more. Part of it's probably just plain old jealousy because I think she sees Magann's parents a lot more, but I'm really happy they love her so much. Talk about conflicted feelings. I just want Hailey to be happy - that's what counts!

Meg and Jason can't keep the dog they found. As a matter of fact, they took him to the pound yesterday. Their idiot landlord wouldn't let them have him. She said he's get too big. Glad she's such an expert on dogs (not). It's none of my business, except I love dogs so much and he was so sweet and affectionate, just a good dog that somebody dumped, who would have had a good home with Jason and Meg. It's not like the dog could possibly do any damage to that house either. It's a pit, which Meg and Jason are trying hard to fix up to make it habitable by someone other than college kids. The paint in the living room was horrifying and it's such a tiny house with a tiny yard... Anything that dog could have done in that house would have been an improvement, including chewing through the walls. Their landlord would best be considered a slumlord, IMHO.

There you go. The good, the bad, and the ugly. I'm trying to get to bed early tonight in hopes I'll feel better tomorrow. I'd like to make it to breakfast for a change. Something other than mini-wheats would be a good change.