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    Monday, Monday *****5/12/2014 *****Hot, Hot Weather
    dollbug posted:
    Morning FMily....MiMi in NC. I guess NC had a short spring this year. I can hardly believe how hot is....was like a hot summer day yesterday. Today is supposed to be yet another hot day. 61* already and it is only 7 am. Will be close to 90* again. And it is only spring. OMG. It just might be a hot, hot summer this year. I only hope is will not be as hot as it was cold this past winter. I know I should not be complaining....but I don't like the very hot weather either. Seems like it is always something to deal with.

    Here is hoping each of you had a nice week-end. It was actually kind of quiet for me. I think I must have crossed my line a bit on Saturday. And then I am not getting enough sleep either. So when I take both of these things in consideration I can understand pretty much why I am not feeling so good. I do hope things get better today though. I am also still having issues with my allergies as well.

    Welcome to the new members who have joined our support group recently. I am sure that soon you will find something that will help you cope better. It does get better with the more you learn about how to deal better with the wrath of the dragon. There are no quick fixes or magic pills to cure the wrath of the dragon but there are lots of good *tools* that just might make a big difference in the way you feel. You just have to figure out what combination will do this. This does take a process, like most anything and everything that we FMers face each day. So hang in there and figure out just what you might need.

    Vitamin D. So important. Talk to your doctor about getting your Vitamin D level checked. Low Vitamin D can cause some people to have additional pain and this can also affect other illnesses as well. It might take a while to get your level back to within the *normal range* or to find where in the normal range is a good one for you.....on the low end, middle or in the high range of the normal. It just might make a difference in your level of pain. The range is wide and sometimes it is hard to know just what might be better. Remember also to keep tabs on least yearly.

    That's all. Have a good Monday. May is almost half way over. It will soon be June. Time does fly by fast.


    katmandulou responded:
    Happy Monday!

    It's going to be hot here, too, 83? by noon is what they're saying now. I went by Gillette Stadium last Fri, and I swear saw a small mound of snow! Like any other day in New England, wait a minute and it will change, they've predicted 57? and rain for tomorrow.

    The gigantic dumpster was taken away this morning, a little notice would have been nice, not a good thing to awaken to. The kitchen is still an empty shell, and I'm waiting to hear from my adjuster to see what we'll get. I bought some ham and rolls over the weekend, so I can make sandwich for lunch instead of buying one very day. Those microwaveable containers of soup and fast lunches are nice, too. This is getting old fast!

    I hope all you mothers out there had a good day yesterday. We saw my Mom Saturday, she was having a good day walking and singing her silly nonsense songs. We went to my MIL's house yesterday, gave her a plant to kill and picked up some of our food from her fridge. I always tell DH not to spend too much on a plant, she always forgets to water it. Other than that, she's a wonderful and amazing woman!

    I've become overwhelmed with paperwork lately. Bills, checks, statements, coupons, sales material, you name it, if it's on a piece of paper it's making me crazy! I hate there FM for that, I uses to be so organized. I'm going to try and wrestle some of it to the floor, and see what happens next.

    I wish you the best day you can possibly have,
    rudyandirmouse responded:
    Good Monday everybody. I hope that each of the ladies here, no matter how you spent it, enjoyed your yesterday.

    It's gonna be a scorcher here today. 90 with just barely a breeze. Maybe a ' pop up ' rain shower in the afternoon to cool us down, but hot and muggy today. Like MiMi, I wonder where spring temps went. It looks like we're going right from mostly cool, cloudy spring days into hot and muggy summer ones

    And it looks like we're in for it again weather wise as this hot weather will be " bumping " into cold temps and that will mean bad weather this way cometh. The Midwest got snow yesterday now that cold air is moving east towards us and we're baking in the SE. So what else could happen over us but strong storms forming. I sure hope the weather people are wrong and nothing bad comes out of these storms.

    I had a nice slow yesterday. Got calls from the DD's. DH said he'd take me out to eat. I said I was just as happy staying home doing NOTHING. I only have 2 days of the year, birthday and this one, that I can say, I do or don't want, to do something. So I said I was just as happy sitting out on the back porch most of the day enjoying my tea, the breeze, the sounds, the birds flying across the yard and DH's company. Great day and at no cost to anyone.

    One of my DD's, and family, plan to take me out to dinner this Saturday after church service. The other DD said she wanted to meet up with me at Old Town Franklin for lunch with the kiddos on Sunday. So looks to be a nice next weekend for me. And it's kind of better as there won't be as many ladies out then to share the space with. I am going to make sure I take my new purse, if the day fits it.

    You know if it's not one thing it's another with fm'ers. Really there is no rest for those of us with Fibro. It's always something! Example: I have my neck traction appointment with my PT this afternoon. And I have to get a print out of some exercises that will help with balance issues. I was told by my Neurologist, during my last appointment, that my
    balance will get progressively 'wobbly' as the years go by and that I might need to use a walker as my balance has been compromised by the SFN and PN damage than say someone else my age who doesn't have it. But he said, balance does get ' wobbly ' for most people as they age, but for those with SFN, PN or both, have hearing loss or inner ear issues, or both, it's more noticeable, disabling. I have, sadly, all of the above. '( He said for me it could take many years before I'd have a need for a walker. But I am already ' wobbly ' some days. And some days it is a struggle not to bump into things.

    So having had bad balance last week I remembered what the Neurologist said and I talked to my PT about the balance issues I was having. He told me that one way to lessen the effects is by doing some daily balance exercise now. He showed me a few to do using a large ball. I had run over my PT time and he had other people to help, so I told him we'd pick the topic back up this week during my appointment.

    So today I need to follow up and get a print out of those exercises, how to correctly do them and for how long each set. I really need to get a jump on this as I don't want to have my balance get any worse than it is or have to use a walker anytime soon. My PT said I can get the ball I need at Walmart. That's convenient and it's not pricey.. also nice.

    Okay will close this here as it's getting near the time I need to get ready for my PT appointment.
    Gentle Hugs, Linda R
    musicmama76 responded:
    Hello All - I hope everyone had a wonderful Mother's Day. I want to start by saying that I am a happy, blessed wife & mother of 3 beautiful teenagers. I am the Worship & Contemporary Music Director at our family's church, a professional singer and pianist and LOVE what I is my calling, what I was made to do...just behind being a mom. So my illnesses are NOT who I am...I just don't want you to think I am a big whiner. I am trying very hard to stay positive in the face of all of this, but I really have had nobody to talk to.

    I am very new to the FM world. I'm certainly not new to symptoms, pain & other disorders/diseases that I have been diagnosed with on the very long journey I've been on getting to the diagnosis that I finally was given just a few months ago - but I am still trying to find what works for me & wrap my head around it all. I guess in the back of my mind I was still kind of hoping they would find something that could be "fixed" with a pill or surgery or something...BUT I have come to realize that isn't the way my body works. It is never the way my body works.

    My body started freaking out after I had my son 13 years ago, after I had my hormones were out of whack & the doctors didn't help me because I was "too young" to have these kind of issues & I was young, naive & didn't know any better. I was only 25 years old & trusted them. I struggled with SEVERE pain with my cycles from then on and severe mood swings until 2009 when it finally got so bad that I had a hysterectomy at the age of 34. Things were a bit better for awhile, but the pain was not completely gone, so they then took out one of my ovaries 2 years later in 2011. Finally, my hormones were ok. but my pain was not gone from my back or hip on that side. Why was I still in pain?! I then was diagnosed with ADD & an extreme allergy to dairy - both of which it ends up I've had my whole life and didn't realize, MIGRAINES that I have to have Botox injections for, Depression, Interstitial Cystitis (that I have a Cystoscopy scheduled for this week to confirm-painful when you don't have FM), GERD, and I have developed extreme allergies to antibiotics & meds like Sulpha, Bactrim, Clindamycin Penicillin, Morphine...the list is extensive. I seemed to be doing things right, even when I exercised, I would get sick. Even when I ate really healthy, I gained weight and my skin would break out in hives...and yet another allergy emerged- gluten this time. Yet another set of goods I couldn't eat.

    I'm just overwhelmed. My pain right now is the worst in my hands/forearms/elbows & hips/knees/ankles Sometimes it goes up into my shoulders.
    mnjeepguy responded:
    Good evening everyone. 90's already? That's just not right. It is 38 here with light rain. The weather has gone crazy and I think it is just a sign of the times and our changing planet. The ice shelves in the arctic are starting to break away. It will take 200 -1000 years they say, but the seas could rise as much as 15 feet. Sorry, I read that today.

    We spent mothers day here as a family. I called my mom. We would have invited her over but she did not sound good at all today, doubtfully up for getting out. I made the DW breakfast and the boys first words were "happy Mother's Day". The weather was not great but we managed to get our walk in before it got worse.

    I am doing slightly better physically. My shoulder and wrist are still sore, but much more manageable now. I have been able to walk or use my elliptical every day for the last several days. I know it is good for me even if I don't quite feel up to it, so I push a little bit to get the ball rolling. One I start I am good. My knees hurt after our walks, they are not in great shape for a 39 year old at all, but I feel better overall than having not walked. The elliptical is great. Even if I have a sore knee or back, the smooth movement does not aggravate them. Now, if I could just do that all year.

    Mentally, well that is about the same. Staying positive in an environment that needs change is tough for me some days. I am still in a funk. I was hoping my trip and spring would help, it did. I need more though. I have a good life, good wife, and great kids. My job is one I should be thankful for and our well being rides on it. The one thing I would really like to change I can't. I would love a clean job where I do not tear my body up. A place to live that is warm and dry, and friends I can trust.

    Friends, they are so hard to find and hard to keep forever. When I was a boy I thought I would have those same ones close to me my whole life. People sure do change over the years. The one I cut off last February has still kept his distance as I demanded. He was like my brother in some ways but had to go. This still weighs heavy on my mind but was the right path for me and my family.

    Enough of me for now. I will persevere as we must. I am stronger now than I have ever been in my life. Things will get better, I insist.

    Mimi, I hope things did get better for you today and that the heat and your allergies did not make things worse.

    Lou, do you have a grill or camp stove you can get creative with? I presume it will be a while before it is all back to normal. The internet is full of great cooking ideas for these.

    Linda R, You are right, it is always something. It would be so nice to have a day or two of somethinglessness lol.

    Musicmama76, so much on your plate and so young to go through what you have. You are not whining, you are sharing as we all do here. That is why we are here. To share and to help each other.

    To all, I hope you have a wonderful night. Take care everyone.

    mnjeepguy responded:
    I just wrote an a post that took me an hr. Lost it! aaaahhh! I will try again tomorrow.

    Take care gang,

    fibroinsd replied to mnjeepguy's response:
    Looks like it came through...afterall..I hate that when you think it is gone...

    always good to hear from you Cory...

    Let's put the fun back in dysfunctional !- Mary Englebright
    fibroinsd replied to mnjeepguy's response:
    oh yes..and wanted to say...I love the line that I have a good wife, a good life and good kids...

    I tell you Cory...that will mean more to you than all the jobs you can ever come up with..

    I have one son that wrote on my fb page about how I was a wonderful person...that I stuck by him through turbulent times..and I know I should have been grateful for that, but all I could think of was how I could have done without the turbulent times...

    Let's put the fun back in dysfunctional !- Mary Englebright
    dollbug replied to mnjeepguy's response:


    dollbug replied to dollbug's response:
    Hello Cory....well, it looks like the post which was sucked up into cyber space finally made it here. Sometimes, things happen on this site that no one can figure out. I know that I don't understand it at all.

    I will say this much there are times when the Orange reply button turns *gray*...then it will NOT post. So when I see this I just copy my post and then start over by pasting it on a new discussion. I still do not understand this either....especially when I have not used all of the characters...which is when it is supposed to turn gray.

    It is what it is though. The old board had some good things which were not moved over to this board. (don't know why either).

    Anyway...I sure hope things will get better for you. I think you are right....people do change...sometimes for the worse, sometimes for the better. Sometimes people make stupid choices and then there are consequences that follow.

    I had several *good friends* in high school. I then moved almost 500 miles away. My best friend who was my age and was in school with was married. (she married at 15)....ended up and had an affair with one of our classmates. So she left her husband and they married. What is so odd is that I think she had a rougher life than she expected to have. Life is not always *greener* on the other side. But I guess some people think it might be. I thought she was making a big mistake when she did this.

    There is so much evil in this world today. Perhaps it has always been around and we just never knew it. I know the internet has opened up all sorts of *issues* for everyone. It is such a good thing, if used the correct way.

    So many people those abuse it instead.

    I often think IF this had been available in the years I was in high school....and just what might have been different for me. I had to go to the library for any research that I needed to do. Young people these days have it right at their fingertips and still some of them do not do well in school.

    OK...I do hope things get better for you soon.

    Take care.


    dollbug replied to dollbug's response:
    Cory....I did a reply and hit the submit button and it did not move....I post is doing the same thing. I tried twice and then decided to remove it. I am glad I did...I hit the button again and as you can post did NOT appear. I then pasted it on a new discussion.

    So it must be an issue on the site.

    Take care.


    katmandulou replied to mnjeepguy's response:
    Hi Cory:
    DH loves his gas grill, and I love whatever he cooks.The problem with that is: no place to clean up! He washed something in the bathroom sink last night - a knife, I think. I'm going to dig through some boxes later and find another mug for my morning tea. The one I'm using now is getting a little icky. LOL
    mnjeepguy replied to katmandulou's response:
    I see, it did make it though. Thanks for the replies.

    bette_kaffitz replied to musicmama76's response:

    I just wanted to say that you are far from being alone. My fibro began with my second pregnancy. The late term backache never went away. My son was up every night from 1 a.m. until breakfast for over a year. As you read more about fibro, you will discover that some of the earliest studies on fibromyalgia showed that volunteers who were deprived of restful sleep for a week--healthy college age volunteers--developed fibro-like symptoms.

    That was 1972. Things have not really improved, but I have. It took 18 years to finally get a diagnosis. I guess I was lucky. That was the year that a group of rheumatologists got together and named fibromyalgia syndrome. They diagnosed it as widespread pain above and below the waist and on both sides of the body that has lasted at least 3 months. They confirmed their diagnosis by finding at least 18 tender points. In addition, they noted that there were other symptoms that seemed to occur with fibromyalgia.

    Almost every one of the symptoms you suffer from can be linked to your fibro. Of course, since these symptoms can be caused by some nasty illnesses, they have to be investigated. And that's how I got my hysterectomy, gall bladder removal, tarsal tunnel syndrome, and LASEK (for daily migranes caused by the weight of my glasses) surgeries. I don't blame the fibro for the bladder neck suspension or hip replacement (and revision). I do blame it for the multiple bladder infections--treated with erythromycin which caused increasingly serious diarrhea with each treatment until finally I had a toilet bowl full of blood. I blame it for the chest, jaw, and arm pain that sent me to the cardiac/intensive care unit--all on the RIGHT side.

    Please ask your librarian to find you copies of Dr. Devin Starlanyl's Fibromyalgia and Chronic Myofascial Pain Sydrome: A Survival Manual--either the first or second edition. These earlier books list all of our crazy symptoms and more. Devin relates her own experiences and those of some of her patients' in dealing with them. She does this with compassion and humor.

    Yes, you have made a life full of love and fulfillment. But you have done this while dealing with a condition that is still so little understood. You have been in near-constant pain. You have known precious little restorative sleep. You have had multiple chemical sensitivities (also covered in Devin's books). And still you are not well.

    Read these early books. Then, after you have digested all this information, Read her latest, Healling Through Trigger Point Therapy. It gives a lot of practical, hands on techniques that may help you. Many of us have benefited greatly from her advice.

    Please understand that there are ways to make your life a little less painful. Many of them do not involve taking medications (which would only result in more allergies or sensitivities).

    Go slowly, very slowly. Accept that any body work you do--from physical therapy, to accupuncture, to trigger point pressure or injections, to gentle exercise--will release the toxins that are presently trapped in your myofascial tissues. Remember to hydrate, and to be super gentle to your body.

    We all have this disease. (I refuse to call it a syndrome.) It effects each of us a little differently. No one treatment helps all of us. But each and every day, more is learned about our condition. Each and every day, we can expect more options to be available to us. And each and every day we can have more hope.

    Bette--full of hope at 70!

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