Topic : Living with Chronic Pain

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Created on : Thursday, July 07, 2005, 09:06:20 am
Author : dataimport
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August 26, 2008, 10:10 am PDT

fibromyalgia

Quote From: brachel

I AM A 42 YR OLD MARRIED WITH 2 CHILDREN.  I HAVE FELT HORRIBLE SINCE NOV.  WENT TO MY DR WHO DIDNT SEEM TO LISTEN SO I FINALLY WENT TO A NEW ONE.   HE HAS BEEN VERY AGGRESSIVE IN HIS CARE.  I WAS OUT OF BREATH HAD HORRIBLE PAIN IN THE MIDDLE OF MY CHEST WHICH PENETRATED TO THE MIDDLE OF MY BACK. WITH ALL THE TESTING HE HAS NARROWED IT DOWN TO FIBROMYALGIA.  ABOUT 2 WEEKS AGO I COULDNT EVEN GET OUT

Welcome to the board...My name is Becky, and I am 47, married, with 3 boys, and very involved in Scouting.   I, too, have fibromyalgia, along with asthma, heart arrhythmia (long qt syndrome), breast cancer survivor, bipolar disorder, thyroid issues, narcolepsy, sleep apnea, migraines, IBS, high cholesterol, weight problem (due to the wacky thyroid levels), chronic fatigue, surgical menopause (hysterectomy with ovary removal), lactose intolerance, food sensitivities, and have had my gallbladder removed...plus, a 2006 cololoscopy revealed pre-cancerous colon polyps that would have been full-blown colon cancer if I had waited until age 50 for that colonoscopy...all disorders affect the others...people with a history of breast cancer are at much higher risk of having colon cancer...

 

I wish I had a doc who would look at my whole body, rather than focusing on one problem, with apparent "tunnel-vision"... I have a doc for each problem, but nobody overseeing the whole thing...my general doc refers out for everything, and she gets reports from the other docs, but she doesn't seem to want to deal with the problems that she has referred out...she is still the best doc I have ever had...she is dead right about whatever she is referring out for...my psych doc is actually the only one who seems to see the connection between the disorders...the thyroid disease is fallout from the hysterectomy with ovary removal...lack of estrogen, progesterone and testosterone...the hysterectomy was because of the breast cancer, which was Estrogen Receptor positive...and I couldn't do the chemo (Tamoxifen) because of the heart arrhythmia...the messed up hormone levels affect the thyroid levels, calcium, vitamin D, and who knows what else.  Fluctuating female hormone levels greatly affect bipolar disorder (every visit to the psych ward was during the PMS phase), and thyroid levels also greatly affect it, as well as certain meds.

 

Been there, done that, with the docs who don't listen...I went through several who decided I was a hypochondriac because I was complaining of chronic pain and fatigue, but there were no lab or xray findings...therefore the pain "didn't exist"...

 

There is much info online about fibromyalgia...just watch out for the sites that are trying to sell "miracle cures"...there are none...Lyrica is the latest thing for treating fibromyalgia...but I don't like the looks of the potential side effects...and I am already on 12 different prescriptions...dont' need another one...

 

I have to go with the "home remedies" for the fibromyalgia...I don't get along with narcotics...they greatly affect my bipolar disorder...too much of a rollercoaster...and prednisone for my asthma is only prescribed when it is severe...it makes me manic...NSAIDs don't mix well with the Lamictal that I take for bipolar disorder...I use heat packs, (microwavable barley pack), Tiger Balm, stretching exercises, (I get really sore from sitting still too much), Excedrin, prescription Flexoril,metamucil (for the IBS), and when the pain gets out of hand, I go to the chiropractor...he is a true "miracle worker"...he has helped much more than any other doctor I've visited for the pain!!  I get a lot of intestinal cramping...often due to not drinking enough water, and drinking too much coffee...

 

With Fibromyalgia, sleep disorders are very common...I would highly recommend that anybody with Fibromyalgia, or the related Chronic Fatigue Syndrome, see a sleep specialist, and get a sleep study...bad sleeps makes for MORE pain...There are over 200 different types of sleep disorders...I have Narcolepsy, AND Sleep Apnea.  I take Provigil for the Narcolepsy, and I have a CPAP machine for the Sleep Apnea.  Since getting the CPAP machine, my asthma has improved greatly...it gives me moist air to breathe at night, and the positive airway pressure seems to keep the airways open more...my pain has improved since getting the CPAP, but it is still present...especially when I over-do it on my good days...I really pay for over-doing it...

 

If your doctor hasn't already done it, you should ask him about having a COMPLETE blood work-up...my doc runs the tests at least once a year...I have recently had my thyroid removed because of nodules...my doc orders cholesterol, liver function, hemoglobin A1-C (long term glucose levels), immediate fasting blood sugar levels, thyroid screen, alkaline phosphatase, vitamin levels, sedamentation rate, and I forget what else...I also have 2X per year mammograms and once a year breast MRIs (follow-up for breast cancer), have had a bone density test, and a bone scan, sinus CT (chronic sinus problems), allergy testing...last year, I broke both of my feet just from tripping over something...I was able to walk on them, so I didn't even see a doc for it until 4 weeks later!!

 

Ladies, please have your yearly mammograms!!  And do your self breast exams...it was a self exam that revealed my breast cancer...the August 2005 mammogram was negative...then 6 months later, I had a tumor that measured 4.5 cm !!!!!...pretty large...that was DCIS...plus, there was infiltrative cancer as well...the lump became red and sore, so I thank God for pain, in that case...it saved my life...the cancer was all removed with the mastectomy in April 2006...and I have had reconstructive surgeries. 

 

SO...back to you...what symptoms are you having, and what is your doc doing about them?  Have you had any other testing yet?  As mentioned above, a complete work-up would not be at all unreasonable.  What tests did your doc use in diagnosing fibromyalgia?  For me, the diffinative test was the "pressure point test"...there are 18 or more pressure points all over the body, that are extremely tender for those with fibromyalgia...how old are your kids, and what gender?

 

Like others have mentioned, I too bruise just from a touch...It even hurts when the cats (love my kitties) walk on my legs or arms...or any place else on my body...I have bruises that I don't even remember how they got there...Once, when my husband (John) helped me up from the floor, he left a hand-print bruise on my arm...just from normal squeezing pressure when helping me up...I have to wonder what others thought about that!!

 

I've been to the doc for chest pain...it was diagnosed as "chest wall pain", and not much can be done about it, except to let it take its course and go away.

 

I think I've written a "book" here...I do tend to be somewhat of a "board hog" sometimes...get me going on a subject, and I'll keep rattling on...and on...(sorry)...

 

I hope my info has been helpful...I see that others have also posted a lot of useful info on fibromyalgia...there are many of us here on the board with it...myself...Sims, Jen, Becca, and many others...stick around...we are here to support each other, chat about pain and pain relief...and just banter about the happenings in our lives...good or bad...funny or sad...sometimes telling a good joke once in awhile, or sharing pictures of our art, pets, and anything else people feel like sharing...the off-subject talk is a good distraction from the pain...we have to life our lives in spite of the pain and fatigue...we just have to learn to adjust, and find what helps (and what doesn't)...

 

Good sleep, exercise, and stress control...probably a common thread for all of us...there are many kinds of pain addressed here...some more severe than others, but all valid pains...

 

like prof says "PAIN IS PAIN...your pain is not my pain...my pain is not your pain...but that doesn't diminish you own pain"...wait until you meet prof!!  She had shoulder surgery yesterday for an infected shoulder...they removed the prosthetic shoulder joint, and were going to scrape out the infection...she may need additional surgeries to remove more infected tissue...she has multiple pain and degenerative disorders, and she has a wealth of information, and she has some comical cats...she will be in the hospital anywhere from 3 days to 6 weeks, depending on what they found during the surgery, and how well she heals...if she is in the hospital long-term, I hope they will provide a computer with internet, so she can keep in touch...Prof...if you're out there, we're all thinking of you...

 

OK...the book has become a novel...I should go now...again, welocme...and stick around...you'll like it here...Becky

 
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August 26, 2008, 10:49 am PDT

Ahh.. Coffee is extra Good this A.M..

Quote From: mustbecrazy

Good morning Dianah...

 

John is still suffering from his knee...he is having swelling of his lower leg and ankle...it improved last night with some ice and just keeping it up...the orthopedic office has NOT called yet...the referral was sent on Friday...it is very frustrating to be kept waiting.  The MRI showed arthritis (which he never knew about), and a torn meniscus, plus the mystery metal...don't know how much metal, or where or when he got it there...

 

I'm just sore all over...my neck, shoulders, back, and knees...probably time for a visit to the chiropractor...but we are trying to conserve on gas...

 

The kulinary kid passed his Black Box final yesterday!!  YAY!!  He cooked baked pork loin, potato-cheese soup, and bananas flambe...the dessert was supposed to have crepes, but he ran out of time...got marked down for not having the crepes...so he received a C...but that's passing, and he learned that he needs to learn to multi-task when he is cooking...something that comes with time and experience.

 

I cleaned the small fish pond yesterday...it was pretty yucky with algae on the sides...I scrubbed off the algae with the scrubber, and then I did a complete water exchange...siphon to get the water out, with the hose running at the same time to put the water back in...the fish didn't seem to mind too much...it is crystal clear now...the floating plants were infested with algae as well, plus some slugs...don't know how the slugs got in there!!  I washed each one individually, with great care...now for the big pond...not as bad because we don't have fish in there yet...just dirt that has blown in from the part of our landscaping that isn't finished yet...it is just bare dirt at the moment...have to get the weed fabric and rocks placed before we get more weeds!!  (All in due time)...the ponds need a complete cleaning about once a month...when the filter flow looks reduced, it is time to clean. 

 

I wish I could be so motivated about the house...what a mess!!  We have clutter everywhere...coffee table, dining table, kitchen counter tops, desk...it is just so overwhelming to think about it...I guess I'll have to take one surface at a time...it's just a matter of finding a place for everything, and put everything in its place.  But, I get really stressed when things are clean...really uptight about anybody making messes...so, really, I'm happier when it is a mess...does that make sense?

 

But I don't like having anybody over when the house is so messy...and John brought one of the Scout dads through the house to look at the beautiful deck that we built in 2006, and finished last year...it is really nice, but John could have taken him through the side yard instead of the house...I'm so embarrassed for somebody to see the mess!!  I guess I inherited my bad house keeping habits from my mom...we always had clutter somewhere, and my room was always a mess...shared a room with 2 of my sisters when we were little...finally got my own room at age 11...kept is cleaner, but not perfect...

 

My energy levels vary greatly...I get one good day, where I have energy to do something, and then the next few days, it's like I have to recover from all of the work...that's fibromyalgia for you (like sims said)...

 

We installed an automatic sprinkler system about 3 years ago...we love it...no more remembering to change the sprinkler...and we can water in the middle of the night, so we get good water pressure...we are on a shared irrigation system, and when multiple yards are being watered, it cuts the water pressure for everybody...we have coordinated our watering times with others in the neighborhood who have automatic systems, and we leave the daytime hours available for those who still have to drag their hoses around.

 

You must be getting the winds that we had a few days ago...it blew really hard...filled the ponds with leaves from the annoying poplar trees that belong to the orchard behind us...they drop leaves and branches on our house every time it is windy...we had 25 mph sustained winds with 45 mph gusts...today, we have a nice breeze...

 

Glad to hear that your knee is healing so well...if only John's would heal up too...

 

Gotta get to reading the rest of the messages...

 

Becky

So good to "talk" to you this morning. I miss you on the weekends. But I also have to "smile" when thinking back to our weekends with the boys.. WOWZA.. it was mock 10 and always something going on and them more... ha ha ha....

 

I'm telling you.. what is the odds that two of us have "lost" a Mother In-law and then have Debbie dealing with the "same" road that we just drove on????

 

Then, John hurts his knee and it the meniscus and ??? and then Morgan breaks her leg.. I have knee surgery and we think it the meniscus, but ends up being more damage under the knee cap.. It's just crazy..

 

Oh, the swelling, I am so feeling for John. I still do not have a knee cap on the right leg.. the swelling is going down... but it's still there...

And there was a day that I had a hard time pulling my jeans off.. the knee was so swollen, that the jeans had a hard time going over the knee......

 

Thanks for the Wind.. they say 18 mph right now, but sounds like 100... the temp is down also, we're sitting at 73 and it's 11:45..... I knew I had to water last night, due to the wind today....

 

The ponds sound so cool. Can't wait to see pictures of the new one.. Also, a lot of work. But, for those who love the outside, it's not work....

 

And, Mom and I were just talking about those who have the love for their yard, the house seems to get put on the back burner in the summer...

 

So, don't freak out too much about the house.. Soon enough, it's going to be a long cold winter and you will be Stuck inside and will feel like dealing with the piles... But right now.. enjoy what time you have left in the yard..........

 

Yahoo for the Culinary Kid.. Wow, sounded like a wonderful meal to me... And you are so right.. he's "learning"....

 

Oh, let me tell you, you are not alone in the "low energy department".. And I am so glad to know I am not alone in this battle....

There are a few high energy days and more low days.... ugggg....

 

And on the days I work.. once I get home.. it' takes everything I have to just get a meal done and that's about all I can give.....

 

Okay.. need to grab some breakfast and meds and keep reading the post......

 

Happy Tue to you.....

 

HUG HUG HUG..... Love Dianah

 

 

 
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August 26, 2008, 11:06 am PDT

spiders and snakes...oh my!!

Quote From: angelicspirit

Yep scared of all bugs, spiders, and snakes. I guess you can say I more afraid of the creepy, crawling, slimy part of them. lol. Well had chorus today but mainly was about the syllabus than anything. looks like its going to be fun since there will be three concerts, yeah. what is funny is my chorus teacher knows my old high school chorus teacher.

I have three boys...and I grew up with 7 older brothers...so bugs, spiders, and snakes are fascinating to me...I just don't like the ones that bite...my boys like to over-turn the rocks in our yard and find the pill bugs, ants, centipedes, and whatever else they find.  Once, one of our boys kept a fuzzy black spider as a pet...this particular spider has a pretty nasty bite...we bought him crickets to eat...he was part of an "eco-system" science project...he lived for quite some time...usually, we squish the black fuzzy ones...they hang out by the front door, and like to get inside...the dog ate one of them once, and his face swelled up huge...had to take him to the vet!!  The spider must have bitten his mouth before being eaten...

 

Slimy worms are pretty neat...especially the night crawlers...we find them while gardening...slugs are OK, as long as they are not eating the flowers...In the woods, there are some pretty big slugs...pretty interesting to watch...and when we went to Oregon, we saw banana slugs...big yellow ones...and we love frogs and toads...and lizards, newts, salamanders...etc...we can find them all around here...and we have some resident garter snakes living outside in our garden...they hang out by our fish ponds...

 

Garden spiders are pretty cool, as long as they don't get on me...mosquitos, ticks, and biting flies...I don't have much use for them...I guess they keep the birds fed...there are birds around here that fly low at dusk, catching and eating the bugs in the air...so glad for bug repellant!!

 

As for the fatigue that you mentioned...ask your doc about seeing a sleep specialist for a sleep study...sleep disorders are very common with fibromyalgia, and poor sleep causes more pain....I said this already in my previous post...there are many factors that go into relief of fatigue (some I haven't found yet!!)...I use a CPAP machine for sleep apnea, and I take Provigil for Narcolepsy...and I take Temazepam, so I can sleep at night...not only does lack of sleep, or poor sleep affect fibromyalgia, and other pain conditions, it also affects my bipolar disorder...in a bad way...

 

Since seeing the sleep specialist and getting the correct diagnosis for my sleep problems, and getting treatment, things have improved drastically.  I used to spend more than half the day sleeping...I just could NOT wake up...could not get moving...and I HAD to do that if I wanted to drive anywhere without falling asleep at the wheel...definitely NO long driving trips!!  (not with me driving)...I couldn't plan anything for the morning...all appointments and shopping had to be done in the afternoon...the Provigil and CPAP machine are the best things that ever happened for my fatigue (that and my husband's CPAP!)

 

Besides a sleep evaluation, there are some things that you can do to help you sleep...they call it "sleep hygiene"...

 

Go to bed at the same time every night, and get out of bed at the same time every morning...even on weekends...(it's true...when I sleep in, I am just MORE tired)...an erratic sleep schedule really messes up your body clock, and makes it harder to sleep, and harder to get up, harder to have any energy during the day...

 

I know that being a student, you are probably putting in a lot of late nights studying...what times do you go to school?  If you don't have to be there terribly early in the morning, it might be better to go to bed at a reasonable time, and do your homework in the morning...that's what our oldest son started doing...he is feeling much better for that...

 

NO TV in bed...when you go to bed, there shouldn't be any distractions...

 

Get ear plugs if your spouse snores too much (and ask him to get a sleep study too!...my husband has sleep apnea, with wall-shaking snoring, and his CPAP was the best thing that ever happened to me!!)...

 

If you have anything in your bedroom that emits light, cover it up, or get one of those sleep blindfolds.  Any amount of light, no matter how small, will penetrate your eyelids and make your body think that it should be awake.  If you have light outside your window, get better blinds or curtains that keep the light out.  Even that digital alarm clock puts out enough light to keep you awake...

 

If you take a sleep medication, be sure to go to bed ontime...if the sleep med is taken less than 8 hours before you have to get up, you'll have a harder time getting out of bed...been there, done that...

 

If you don't want a prescription sleep med, try Benadryl...that's what the sleep specialist has recommended for our kids...and it works!!  The chemical in Benadryl (diphenhydramine) is the same one that is in Unisom, and Tylenol PM...

 

If you take a daytime nap, limit it to 20 minutes...set an alarm...and don't take any evening naps...actually, the doc says that a power nap after lunch is a good thing...

 

Be sure to treat your pain before trying to sleep...I absoutly CAN'T sleep when I have a migraine headache, or severe back or muscle pain...I take Excedrin for the migraines, and I take Flexoril along with Excedrin for the severe muscle and back pain...and neck pain...Tylenol alone doesn't do it for me...it seems that the combination of the Tylenol and Aspirin that is in Excedrin is a better match for me.

 

NO caffeine after 3:00 in the afternoon...it's amazing how much caffeine will affect sleep...although, there is caffeine in Excedrin...but apparently not enough to override the Temazepam...

 

Don't drink alcohol...period...

 

Don't drink large amounts of any beverage too close to bedtime...you don't want to have to get up in the middle of the night...

 

If you are unable to sleep, keep your clock covered up...you don't need the added stress of watching the minutes and hours tick by...my sleep doc says that you are probably getting more sleep than you think you are...

 

If you are unable to sleep, don't get up and watch TV or get on the computer...those things will actually keep you awake...or you will fall on the floor when you fall alseep in your computer chair...LOL  The light emitted from the TV or computer screen will make your body think it should be awake...

 

This advice came from my sleep specialist...and I try to follow it as much as I can...when I violate the sleep rules, I pay for it...big time!!

 

On to another subject...I LOVE to sing...mostly Christian songs...and I love to write Christian songs...I sing on our church's worship team, and I love to sing and play my guitar at home...I also play the trumpet...it is very good for my asthma to keep my lungs in shape...plus, I love to paint...I paint portraits of animals on rocks...my next project is my brother's cat...they are housing our oldest son while he is in culinary school...a huge burden off our minds...and we want to give them a thank you gift...there is nothing that we could give them that would express just how grateful we are...but a token that I hope they will like...

 

I HATE housework...and gardening seems to never end...I hate weeding because the weeds just keep coming back (kind of like laundry and housework)...

 

Well...I've really been a board hog today...gotta go...the kids are bickering again...

 

Everybody be well today...Becky

 

 

 
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August 26, 2008, 11:21 am PDT

Hi My Dear Friend...

Quote From: simonecornelia

Dear Dianah,

 

We were posting at the same time without the coffee. I pushed 'show new messages' and then i saw you, we were both typing so far away from eachother and yet so near.... snif snif

 

I have been so down Dianah since i have last posted. I finally realised i will never get any better again and accepting is the verb for me now.

 

With the help from the post from prof, i really do try to see and feel the difference between being a chronic-pain-patient and living with chronic pain but it is so hard.

 

I have been crying day and night for more then a week, i did not even get out of bed, just crying. I have not cried like that since my father died in 1990. And then i went on the internet looking for answers. I ended reading books about chronic pain and i understand now that i must change my way of thinking about being sick and getting sicker. And try to find a way to learn to live with the idea by unlearning the habbit of feeling guilty, being angry and frustrated due to the pain that comes along with being sick. It will be a long process, i think. Don't ask me why i did not realise it sooner, i don't know, really, i don't. It just seemed to hit me, just like that.

 

Always fighting myself, being hard on myself and everyone else, not giving up being the perfectionist, not giving up feeling guilty, i was being cruel to myself and others and i need to change. I must let go of the hardest thing to do for me, my fight against myself of wanting to be perfect. Struggling, biting the pain away and hoping to end the work i started, taking extreme lots of painmeds, not even thinking of giving up, ending up with renalfailure at one point and still not realising that i had pushed my body over the limit and then...... all at once it hit me. My brain shouted : stop, NO MORE, i am pushing myself to death.

 

I was sitting in the garden cleaning my flowers and when i had that moment, stop, no more, i felt like an empty sac. I was just sitting there and i did not have the strenght anymore to roll my wheelchair inside.

 

After reading some books now and one especially by Doctor Frits Winter, a doc from Holland, i realised i can not blame myself anymore for being sick. I must change my way of thinking and living and then it will be allright to have pain. There is a step-by-step handbook inside that book wich can help me and my family to make that huge change. I just finished reading it and it is in fact a good book to work with.

 

But Dianah, the tears that i have cried, my hubby said he started to panic when he saw i could not stop anymore. I can cry for something that happens but that was not normal anymore. I just felt terrible grieve.

I am done crying now, at least for now, but now  i can say ....... and that is an expression from us, maybe in the US too, don't know...... but i can say "Where there is a door that closes, there is another door that opens" I am scared for what there is behind that door that opens now but i am ready to go inside the room behind that door and see what it brings me.

 

 

Love, sims

Oh Sims...

 

I can not tell you how "happy" I am to see YOU!

 

I know there are times it's hard to post, but you need to at least just say hi and I'm okay.. Just let us know you are around.. I get way worried when we  don't "see you".......

 

Too funny about last night, both of us on.. I did not see you.. sniff sniff sniff......

 

Woke up this morning late and my first thoughts were of Prof.. So hope that surgery went good and her way.. Also that she had no major problems... HOPE HOPE HOPE..... This infection has gone on way too long.. So, let's hope she's on some really good pain meds today and she just SLEEPS..............................

 

Sims, it sounds to me, like you are on the up-side of this major grieve you have been dealing with. I mean it.. You sound like you are over this major hump and that you are really ready for the next chapter in your life...

I am so very proud of YOU.. "yes, you are ready to enter though that next door"..

 

And I think this "down time" you have had, has only made you stronger in many ways.

 

Please tell me the name of this book by Dr Frits Winter... I would love to read this.....

 

To be honest with you, there are many times I wish I could "cry".. I think my antidepressants keep me from being able to just "break down and cut loose"...

It takes a lot for me to cry.. And it's usually when someone else is crying in-front of me, that makes me cry...

I know, it's crazy.....

 

But I think it's so health to be able to just let it out... And I'm not able to do this.... And I wish I could.....

 

I heard from Lashy again yesterday. She is home and she is resting a lot. She said she gets the kids up and ready for school and then after they are gone, she back in bed until they get home...

 

She said she is so ready to get back up and going, but right now, no energy...

 

But, she's Home and there is not better place to be than your own bed..

 

She wanted me to tell everyone HI and she will post soon.....

 

Sims.. has your Son started back to school yet?? Our kids here just started today...  How about Daughter?? Has school started for her yet????

 

My Hubby is just coming off of 4 night shifts. So today is the hard day.. he will only sleep around 3 hours and then up and I bet he's back in bed by 7 or 8 tonight....

 

Our yard needs mowed bad.. but we have high winds today.. So.. will see what the afternoon brings.

 

I really need to work on the house some today.. Yikes... ha ha ha.........

 

I just had breakfast with you.. Had fat fee vanilla yogurt and took my meds....

 

Sims.. if you need to "talk".. here's my e-mail address.... dharden@collinscom.net

 

You know me.. I can yak with the best of them... ha ha ha.....

 

I am so glad to See You and I am so so PROUD OF YOU ALSO.....

 

Sending you All my Love and HUGS..... Love Dianah

 

 

 

 

 

 
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August 26, 2008, 11:33 am PDT

Good Afternoon Jen...

Quote From: angelicspirit

Yep scared of all bugs, spiders, and snakes. I guess you can say I more afraid of the creepy, crawling, slimy part of them. lol. Well had chorus today but mainly was about the syllabus than anything. looks like its going to be fun since there will be three concerts, yeah. what is funny is my chorus teacher knows my old high school chorus teacher.

Ha, boy oh boy.. I'm all yak today.. started in the morning and here it is, now 12:30 P.M......

 

Oh well.. the wind is blowing and can't do anything outside....

 

So glad school is going good for you... And too funny about how small the world really is.. that your teacher now, knows your high school teacher....

 

I was going to do ribs out on the grill tonight, but now think I have to come up with plan B.. too windy to BBQ......

 

Oh, I love to cook on the grill......

 

Well, I guess I'm going to clean up the kitchen and living room and guess I will throw some cloths on also.. Still in my PJ"s......

 

HUG HUG HUG.... Love Dianah

 
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August 26, 2008, 7:22 pm PDT

Dear Becky

Quote From: mustbecrazy

I have three boys...and I grew up with 7 older brothers...so bugs, spiders, and snakes are fascinating to me...I just don't like the ones that bite...my boys like to over-turn the rocks in our yard and find the pill bugs, ants, centipedes, and whatever else they find.  Once, one of our boys kept a fuzzy black spider as a pet...this particular spider has a pretty nasty bite...we bought him crickets to eat...he was part of an "eco-system" science project...he lived for quite some time...usually, we squish the black fuzzy ones...they hang out by the front door, and like to get inside...the dog ate one of them once, and his face swelled up huge...had to take him to the vet!!  The spider must have bitten his mouth before being eaten...

 

Slimy worms are pretty neat...especially the night crawlers...we find them while gardening...slugs are OK, as long as they are not eating the flowers...In the woods, there are some pretty big slugs...pretty interesting to watch...and when we went to Oregon, we saw banana slugs...big yellow ones...and we love frogs and toads...and lizards, newts, salamanders...etc...we can find them all around here...and we have some resident garter snakes living outside in our garden...they hang out by our fish ponds...

 

Garden spiders are pretty cool, as long as they don't get on me...mosquitos, ticks, and biting flies...I don't have much use for them...I guess they keep the birds fed...there are birds around here that fly low at dusk, catching and eating the bugs in the air...so glad for bug repellant!!

 

As for the fatigue that you mentioned...ask your doc about seeing a sleep specialist for a sleep study...sleep disorders are very common with fibromyalgia, and poor sleep causes more pain....I said this already in my previous post...there are many factors that go into relief of fatigue (some I haven't found yet!!)...I use a CPAP machine for sleep apnea, and I take Provigil for Narcolepsy...and I take Temazepam, so I can sleep at night...not only does lack of sleep, or poor sleep affect fibromyalgia, and other pain conditions, it also affects my bipolar disorder...in a bad way...

 

Since seeing the sleep specialist and getting the correct diagnosis for my sleep problems, and getting treatment, things have improved drastically.  I used to spend more than half the day sleeping...I just could NOT wake up...could not get moving...and I HAD to do that if I wanted to drive anywhere without falling asleep at the wheel...definitely NO long driving trips!!  (not with me driving)...I couldn't plan anything for the morning...all appointments and shopping had to be done in the afternoon...the Provigil and CPAP machine are the best things that ever happened for my fatigue (that and my husband's CPAP!)

 

Besides a sleep evaluation, there are some things that you can do to help you sleep...they call it "sleep hygiene"...

 

Go to bed at the same time every night, and get out of bed at the same time every morning...even on weekends...(it's true...when I sleep in, I am just MORE tired)...an erratic sleep schedule really messes up your body clock, and makes it harder to sleep, and harder to get up, harder to have any energy during the day...

 

I know that being a student, you are probably putting in a lot of late nights studying...what times do you go to school?  If you don't have to be there terribly early in the morning, it might be better to go to bed at a reasonable time, and do your homework in the morning...that's what our oldest son started doing...he is feeling much better for that...

 

NO TV in bed...when you go to bed, there shouldn't be any distractions...

 

Get ear plugs if your spouse snores too much (and ask him to get a sleep study too!...my husband has sleep apnea, with wall-shaking snoring, and his CPAP was the best thing that ever happened to me!!)...

 

If you have anything in your bedroom that emits light, cover it up, or get one of those sleep blindfolds.  Any amount of light, no matter how small, will penetrate your eyelids and make your body think that it should be awake.  If you have light outside your window, get better blinds or curtains that keep the light out.  Even that digital alarm clock puts out enough light to keep you awake...

 

If you take a sleep medication, be sure to go to bed ontime...if the sleep med is taken less than 8 hours before you have to get up, you'll have a harder time getting out of bed...been there, done that...

 

If you don't want a prescription sleep med, try Benadryl...that's what the sleep specialist has recommended for our kids...and it works!!  The chemical in Benadryl (diphenhydramine) is the same one that is in Unisom, and Tylenol PM...

 

If you take a daytime nap, limit it to 20 minutes...set an alarm...and don't take any evening naps...actually, the doc says that a power nap after lunch is a good thing...

 

Be sure to treat your pain before trying to sleep...I absoutly CAN'T sleep when I have a migraine headache, or severe back or muscle pain...I take Excedrin for the migraines, and I take Flexoril along with Excedrin for the severe muscle and back pain...and neck pain...Tylenol alone doesn't do it for me...it seems that the combination of the Tylenol and Aspirin that is in Excedrin is a better match for me.

 

NO caffeine after 3:00 in the afternoon...it's amazing how much caffeine will affect sleep...although, there is caffeine in Excedrin...but apparently not enough to override the Temazepam...

 

Don't drink alcohol...period...

 

Don't drink large amounts of any beverage too close to bedtime...you don't want to have to get up in the middle of the night...

 

If you are unable to sleep, keep your clock covered up...you don't need the added stress of watching the minutes and hours tick by...my sleep doc says that you are probably getting more sleep than you think you are...

 

If you are unable to sleep, don't get up and watch TV or get on the computer...those things will actually keep you awake...or you will fall on the floor when you fall alseep in your computer chair...LOL  The light emitted from the TV or computer screen will make your body think it should be awake...

 

This advice came from my sleep specialist...and I try to follow it as much as I can...when I violate the sleep rules, I pay for it...big time!!

 

On to another subject...I LOVE to sing...mostly Christian songs...and I love to write Christian songs...I sing on our church's worship team, and I love to sing and play my guitar at home...I also play the trumpet...it is very good for my asthma to keep my lungs in shape...plus, I love to paint...I paint portraits of animals on rocks...my next project is my brother's cat...they are housing our oldest son while he is in culinary school...a huge burden off our minds...and we want to give them a thank you gift...there is nothing that we could give them that would express just how grateful we are...but a token that I hope they will like...

 

I HATE housework...and gardening seems to never end...I hate weeding because the weeds just keep coming back (kind of like laundry and housework)...

 

Well...I've really been a board hog today...gotta go...the kids are bickering again...

 

Everybody be well today...Becky

 

 

 Hi Becky,

 

How are you today, still feeling sore? I hope not.

 

God, howlong must John still wait to get some treatment for his knee???? You do a wonderful job with the ice and heat but he does need a doctor, yes? I surely don't want to live in the US with that medical thing that is going on. But wish John much strenght from me and tell him to listen to his lady about not walking on that knee.

 

Congratulations on your sons passing in culinairy school. Le Cordon Bleu school, waw, if he is really good, he should go to France. Later yes but the French have excellent food. I live not so far from the French border and eat French every day. Just one thing and i (we Belgians are proud of it), You know, you all say French fries* but in fact the original place where they were made is Belgium,did you know that. It's true. It should of been Belgian fries* but some chef called them French. Not many people know this but is really true. And Cordon Blue is a meat-dish, dilicious*, we eat it with sweet patatoes and tomatoes a lot. It is porc slices opened in the middle with a special cheese inside, closed up again and turned in 'chapelure'. You bake them and the cheese melts, very yummy yummy. Thinking of it, the water comes in my mouth.

 

I have been reading your post about the sleeping habbit. There are some good hints in it that i will try, thank you. Only just a few questions, when do you go to bed and get up, even in the WEds? It is to have an idea what you mean, not too late, 10,11,0.00PM? Up when? 6,7,8.00 AM? Me is sleep when i can, day or night and i know now that it must change that bad habbit. The 20 minute i know but it does not work with me. I think all the time, still 15 minutes, still 10 minutes and then i panic. Any advice?

 

Another thing i have want to ask you about but did not dare is, how did you know when you had Bipolar Syndrome? Can you discribe how you are, Becky, please?

Why? Well, sometimes i am very manic and then in a couple of hours it can turn to the wurse. I love to be manic, those moments don't stay long but it gets me going, if you know what you mean. I don't dare ask my doc, afraid he would laugh with me. Can you tell me how it is to live with Bipolar without meds, i mean, how was it for you when you were not yet diagnosed with the disease.? How did the doc came to the conclusion?

 

I red that you said 'garter snakes' (pluriel), there was just one before or did he find a friend?

 

Good luck on the work on the rocks to keep the water from getting inside them.... hard work. I do hope it will work.

 

Love, sims

 

 
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August 26, 2008, 7:49 pm PDT

Dear queen...

Quote From: dianah

Oh Sims...

 

I can not tell you how "happy" I am to see YOU!

 

I know there are times it's hard to post, but you need to at least just say hi and I'm okay.. Just let us know you are around.. I get way worried when we  don't "see you".......

 

Too funny about last night, both of us on.. I did not see you.. sniff sniff sniff......

 

Woke up this morning late and my first thoughts were of Prof.. So hope that surgery went good and her way.. Also that she had no major problems... HOPE HOPE HOPE..... This infection has gone on way too long.. So, let's hope she's on some really good pain meds today and she just SLEEPS..............................

 

Sims, it sounds to me, like you are on the up-side of this major grieve you have been dealing with. I mean it.. You sound like you are over this major hump and that you are really ready for the next chapter in your life...

I am so very proud of YOU.. "yes, you are ready to enter though that next door"..

 

And I think this "down time" you have had, has only made you stronger in many ways.

 

Please tell me the name of this book by Dr Frits Winter... I would love to read this.....

 

To be honest with you, there are many times I wish I could "cry".. I think my antidepressants keep me from being able to just "break down and cut loose"...

It takes a lot for me to cry.. And it's usually when someone else is crying in-front of me, that makes me cry...

I know, it's crazy.....

 

But I think it's so health to be able to just let it out... And I'm not able to do this.... And I wish I could.....

 

I heard from Lashy again yesterday. She is home and she is resting a lot. She said she gets the kids up and ready for school and then after they are gone, she back in bed until they get home...

 

She said she is so ready to get back up and going, but right now, no energy...

 

But, she's Home and there is not better place to be than your own bed..

 

She wanted me to tell everyone HI and she will post soon.....

 

Sims.. has your Son started back to school yet?? Our kids here just started today...  How about Daughter?? Has school started for her yet????

 

My Hubby is just coming off of 4 night shifts. So today is the hard day.. he will only sleep around 3 hours and then up and I bet he's back in bed by 7 or 8 tonight....

 

Our yard needs mowed bad.. but we have high winds today.. So.. will see what the afternoon brings.

 

I really need to work on the house some today.. Yikes... ha ha ha.........

 

I just had breakfast with you.. Had fat fee vanilla yogurt and took my meds....

 

Sims.. if you need to "talk".. here's my e-mail address.... dharden@collinscom.net

 

You know me.. I can yak with the best of them... ha ha ha.....

 

I am so glad to See You and I am so so PROUD OF YOU ALSO.....

 

Sending you All my Love and HUGS..... Love Dianah

 

 

 

 

 

Hi lady purple hat,

 

 

Just like you, sweet lady, my mind was all day about Prof. I saw a nice post last night when i logged out from another person a long time ago. I will post it later, you will remember it. I hope that what is in that post may be so true for Prof, the poor thing. May she indeed have a lot of sleep and feel as comfortable as possible. All we can do is hope and pray.

 

You are so right about the losses here on the board. You, Becky, Debbie, Morgan, Prof. August 2008 is a hard one for everybody here.

 

I am sorry, i don't post so i-regalar* but when i feel so down, i feel so guilty to post with just my problems then here on the board. It feels like i would put everybody down with me and i don't want to do that. That is why. But i will send you an e-mail then, ok. Thank you for your address.

 

About your hubby, you miss him, don't you, when he is gone? I think you are like me on that. My hubby is on guard, his last night. It is 4.40AM now for me and can't sleep again. I miss him too.

But still some really good news, tomorrow, wednes day he is on holiday. 2 weeks and a half, till 15 september. I am so happy. No calls from the hospital, no working overtime, no stress, just wonderful.

And he needs it, he is so tired for the moment.

 

Dianah, thank you for being proud of me, it means a lot to me.

I am not over it yet but i need some magor things to change and rapidly. I never understood the real meaning about 'no pain, no gain'. I was being lived by the pain, so after the other door, there must be a way  to lears to live with the pain. Am i getting the point now?

 

Love you Di, sims

 

Ps You wrote :" I can yak with the best of them... hahaha..." ..... What does that sentence mean. Don't understand not a word from it. What is yak? The best of them? Who?

And what does it mean, the word needy?

Big kisses, me

 

 

 
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August 26, 2008, 7:53 pm PDT

Just for prof from sims

Quote From: jb7ctx

One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand-one belonging to him and the other to the Lord. When the last scene had flashed before him, he looked back at the footprints and noticed that many times along the path there was only one set of footprints in the sand. He also noted that this happened during the lowest and saddest times in his life. This really bothered him and he questioned the Lord. "Lord, you said that once I decided to follow you, you would walk all the way, but I noticed that during the most troublesome times of my life, there was only one set of footprints. I dont understand why, when I need you most, you deserted me". The Lord replied: "my precious, precious child, I love you and would never leave you. During your times of trial and suffering when you saw only one set of footprints, it was then that I carried you......"
 
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August 26, 2008, 9:58 pm PDT

Hi sims...

Quote From: simonecornelia

 Hi Becky,

 

How are you today, still feeling sore? I hope not.

 

God, howlong must John still wait to get some treatment for his knee???? You do a wonderful job with the ice and heat but he does need a doctor, yes? I surely don't want to live in the US with that medical thing that is going on. But wish John much strenght from me and tell him to listen to his lady about not walking on that knee.

 

Congratulations on your sons passing in culinairy school. Le Cordon Bleu school, waw, if he is really good, he should go to France. Later yes but the French have excellent food. I live not so far from the French border and eat French every day. Just one thing and i (we Belgians are proud of it), You know, you all say French fries* but in fact the original place where they were made is Belgium,did you know that. It's true. It should of been Belgian fries* but some chef called them French. Not many people know this but is really true. And Cordon Blue is a meat-dish, dilicious*, we eat it with sweet patatoes and tomatoes a lot. It is porc slices opened in the middle with a special cheese inside, closed up again and turned in 'chapelure'. You bake them and the cheese melts, very yummy yummy. Thinking of it, the water comes in my mouth.

 

I have been reading your post about the sleeping habbit. There are some good hints in it that i will try, thank you. Only just a few questions, when do you go to bed and get up, even in the WEds? It is to have an idea what you mean, not too late, 10,11,0.00PM? Up when? 6,7,8.00 AM? Me is sleep when i can, day or night and i know now that it must change that bad habbit. The 20 minute i know but it does not work with me. I think all the time, still 15 minutes, still 10 minutes and then i panic. Any advice?

 

Another thing i have want to ask you about but did not dare is, how did you know when you had Bipolar Syndrome? Can you discribe how you are, Becky, please?

Why? Well, sometimes i am very manic and then in a couple of hours it can turn to the wurse. I love to be manic, those moments don't stay long but it gets me going, if you know what you mean. I don't dare ask my doc, afraid he would laugh with me. Can you tell me how it is to live with Bipolar without meds, i mean, how was it for you when you were not yet diagnosed with the disease.? How did the doc came to the conclusion?

 

I red that you said 'garter snakes' (pluriel), there was just one before or did he find a friend?

 

Good luck on the work on the rocks to keep the water from getting inside them.... hard work. I do hope it will work.

 

Love, sims

 

John wants the computer, so I'll have to be quick...

 

Yes, we now have multiple garter snakes...the snake had babies, and now we have little ones, as well as the bigger one.

 

I'll post tomorrow morning about the bipolar disorder...it's a long story...I will say, however ,that if not for the meds, I wouldn't be here...

 

John's knee is feeling better today...not so much swelling...but he still needs to see an orthopedic doctor...we live in a small town, where there is a shortage of specialists.  When the general doctor makes a referral to a specialist, the specialist has to look over the file and decide if he will take the case...rediculous in my opinion...if the general doc says that he needs to be seen, then he needs to be seen!! 

 

I try to get to bed about 10:30, and I get up at 6:30 in the morning.  On weekends, we sleep in until 7:30...on weekdays, we set the alarm for 6:00 AM and hit the snooze bar for 1/2 hour.  On weekends, we set the alarm for 7:00 and hit the snooze bar  for 1/2 hour...the snooze alarm goes off every 9 minutes...we get up when we're supposed to on the weekends, unless one of us accidentally turns off the alarm instead of hitting the snooze bar...the off button is right next to the snooze bar!!

 

For the power naps, I actually set the alarm for 1 hour...it takes me awhile to fall asleep during the day, so 20 minutes ticks by too fast...I'm like you...I keep watching the clock...and if I can't see the clock, I will doze and then wake with a start and wonder how long I still have...but if I don't set an alarm, I'd sleep all day!!

 

Well, I'd better go...I'll let John have the computer for now...I'll be back in the morning...I'll go into detail about the bipolar disorder...in the mean time, check it out online...go to www.nami.org  It is a very good web site and has lots of good information about mental illness...

 

Becky

 
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August 27, 2008, 6:45 am PDT

Wed Morning Hello Everyone

A burr Good Morning

 

It's 45 degree's this morning and just a little breeze blowing.

 

Mr Weather Man is calling for 70's next two days and then will jump up to 80's and then looks like we will be back down to the 70's again...

 

My crazy guys left the house at 4 this morning. They are heading up to set up their tree stands for hunting. They are CRAZY and will act this way until the end of Nov... ha ha ha...

 

Not feeling so good this morning, I am sure it's the 45 degree's that is effecting my poor old body..

 

Sims.. Yak means to "talk".. I know, sounds funny..

Sure hope Prof is hanging in there. I think today will be the hard day for her.. So fingers and toes crossed she just can sleep as much as she can.

 

Sending you a big hug for today HUG HUG HUG......

 

Becky.  So glad Johns swelling is going down. Yeah.... 

When do the kids start back to school?? Our  kids here, started back yesterday..

HUG HUG HUG.........

 

Here I sit, with one of my winter coats on.. how crazy is that, and I'm sure I'm looking good here..

 

A nice-hot-bath is going to take place soon and will see if that helps me feel better. Its like everything on my old body is hurting and almost have the chills....

 

Oh, Morgan is going to have surgery this Friday on her leg. Bless her heart.  They will use screws and a plate to fix her back up..

Sounds like she will be at a top-notch hospital, so that's great on her end...

 

Well, going to head to take a Bath and see if that will bring me back to the living this morning..

 

Hope today will be kind to all of us.. Love Dianah

 

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