Hi from Missizzy

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, Jun 12, 2008.

  1. Missizzy

    Missizzy New Member

    Hi All--I can't seem to email but I'm going to try to post this from a rest stop on I-10 in the middle of West Texas. We're on our way to see my Dad as I told everyone a few days ago.

    How do you guys cope in this heat down here?! I thought I'd die when we stopped for my husband to do some laundry in Blythe. I'm not kidding. I got light headed, threw up several times and then fell into a deep sleep for 5 hours. I was more than a little worried and so was my husband. He drenched me with cold water put all the fans on me and cranked up the A/C. What response do our bodies have? Is it just an inability to regulate our body temp? I was only out in the heat for a minute or so when the "episode" hit.

    I'll be in Central Texas for about four days and plan to be very careful as I desperately want my focus to be on my Dad instead of the DD!! I get so frustrated with my body sometimes.

    On a positive note, once I got cool and stayed cool, I did much better. I've even sat in the front on the motor home a bit and listened to good music with my husband. We've found some pretty city parks at dusk where we've let our little dogs play. All is not lost. I lived in Central Texas so I know all too well about the heat in June. I've just never experienced the heat since my onset.

    Hopefully, I'll be able to read the Board over the next week or so. I miss "seeing" all of you each day. You really lift my spirits.

    Cindy, your emails come to me but I can't seem to post. I've got withdrawl too--bad--lol!!

    Hugs to all,

  2. SGR

    SGR New Member

    Hi Missizzy -

    I'm so happy you are getting out and seeing new sights, even though the reason you are down there is sad. Heat intolerance is part of our disease. I am having temperature issues related to the simplified Yasko protocol and was told on another board that it is a function of having thyroid related low body temperature - it makes us heat intolerant. Wet, cool cloths I think would go a long way in dissipating heat. Best of luck to you. Have lots of fun inspite of......and have a safe trip.

  3. PainPainGoAway

    PainPainGoAway New Member

    I'm soo sorry to hear you got so sick in response to the blasted heat...
    I hope you get there soon and don't have to venture outdoors too much...please take care!
  4. Missizzy

    Missizzy New Member

    Good Morning Everyone!! Well we made it to Fredricksburg, TX and it is hot and muggy. I've stayed holed up in the A/Ced motor home but had a frightening episode yesterday. While my husband went in to pay for a night at a park, I stayed on the bed knitting. The motor home got a little bit warmer--not hot or beastly--while it was idling. I instantly got sick to my stomach, my head started pounding, and I felt like I couldn't breathe. I felt like I was burning up--like it was 120 degrees.

    My poor husband spent the next three hours trying to cool me off. He stripped me down, ran cold water over me in the shower, cranked up the A/C to high (my little dogs were shivering), put two heavy duty fans on me, had me suck on ice, and made me an ice pack for my head. It took literally hours to even feel any coolness. He was turning blue but I was still as hot as could be. I'm sure I was quite a sight--stark naked rubbing ice all over me. Very very sexy, let me tell you. What in heaven's name is this? It's not like I went outside and overdid. The odd thing is that I didn't sweat at all and my husband said my skin felt cool and dry. This morning I feel hung over (and no I didn't drink a drop) and weak and shaky.

    I really hate to keep posting "bad news" but I'm really frightened by this. I know I'm heat intolerant but this is ridiculous!! We'll be at my parent's today and will have to stay in the motor home as they have no A/C. They live in a historical old rock building and just have a fan. I'm so worried that I will frighten the daylights out of them with this DD. They haven't seen me since I got sick and I'm their only child. I really wanted to put on my "best face". I really want the focus to be on my Dad.I know now what it means to stay in our "box". Boy, I'm ten miles out of mine!! My sweet husband is going to deserve a medal when we're done with this. It has truly been a LABOR of love.

    We have enjoyed being together and really value the peacefulness without all our kids. So all is not lost. I haven't been able to open my email for the last day or so or to post out. I miss being on immunesupport so much. You guys mean the world to me.

    Cindy--I promise that I'll email the second that I can. As the Beetles sang: "I Want to Hold Your Hand". Ooops, forgot--that's probably before your time.


  5. SGR

    SGR New Member

    Missizzy - I'm a little worried about environmental toxins and your RV. A few years back we went "camping" and stayed in trailers on the coast. These were fairly new and I had the worst headache after taking a nap in the trailer, complete with sinus issues. Felt horrible, of course. I'm thinking it was the offgassing from all the synthetic materials. Really had to ventilate the place just to stay in it.
  6. marti_zavala

    marti_zavala Member

    Please consider the dehydration. Can you find a WalMart and get some Thermotabs from the Pharmacy section (OTC but you have to ask for them).

    They are sodium/potassium pills and will help you from getting dehydrated. A saline IV is a great idea and should carry you a couple of days. You will be amazed at how much better you feel upright.

    All the best,
  7. PainPainGoAway

    PainPainGoAway New Member

    I bet they don't mess around with heat stroke in Texas-- I hear it's the air conditioning capital of the world...but if they could only take care of the outdoors...
    your voice sounds like gold...have some gatorade and stay indoors.
    I feel safer for you knowing you have such a helpful husband to get you thru this...but just in case, don't hesitate to call the paramedics to give you a nice IV.
    Love Me Do,

  8. marti_zavala

    marti_zavala Member

    Someone posted this link and I thought this information might be interesting to you in WHY you are having heat tolerance issues:


    Low cardiac output explains the symptoms of CFS
    The job of the heart is to maintain blood pressure. If the blood pressure falls, organs start to fail. If
    the heart is working inadequately as a pump then the only way blood pressure can be sustained is by
    shutting down blood supply to organs. Organs are shut down in terms of priority, i.e. the skin first,
    then muscles, followed by liver, gut, brain and finally the heart, lung and kidney. As these organ
    systems shut down, this creates further problems for the body in terms of toxic overload,
    susceptibility to viruses which damage mitochondria further, thus exacerbating all the problems of
    the CFS sufferer.

    1. Effects on the Skin
    If you shut down the blood supply to the skin, this has two main effects. The first is that the skin is
    responsible for controlling the temperature of the body. This means that CFS patients become
    intolerant of heat. If the body gets too hot then it cannot lose heat through the skin (because it has no
    blood supply) and the core temperature increases. The only way the body can compensate for this is
    by switching off the thyroid gland (which is responsible for the level of metabolic activity in the
    body and hence heat generation) and so one gets a compensatory underactive thyroid. This alone
    worsens the problems of fatigue.
    The second problem is that if the micro-circulation in the skin is shut down, then the body cannot
    sweat. This is a major way through which toxins, particularly heavy metals, pesticides and volatile
    organic compounds are excreted. Therefore the CFS sufferer’s body is much better at accumulating
    toxins, which of course further damage mitochondria.

    Hope this helps.
  9. SGR

    SGR New Member

    Thanks for connecting the dots on the heat/thyroid issue.
  10. Missizzy

    Missizzy New Member

    Hi All--I wanted to report that I had a MUCH better day yesterday and am even a little stronger today. When my husband pushed me in my wheelchair to lunch, he came up with a great idea that really worked. He put a Zip-loc full of ice behind my back under a towel. That kept me cool. I’ve just been moving very slowing and trying to stay close in tune with my body. Thank you, Marti, for the link, that explains a lot. I also found an interesting article on heat intolerance with MS and related diseases which describes the intolerance as a pseudo-exacerbation which is very uncomfortable and frightening but not dangerous. I want to assure everyone that I have stayed hydrated. The article about MS said that even a quarter degree temperature rise in the body core can set off this exacerabation effect.

    I had the best surprise yesterday. I got a cell phone call from Painpaingoaway!! We’ve exchanged contact info and have gotten to be very close off the Board but had never actually spoken. I cannot tell you what this meant to me. I almost cried with relief and joy. I was feeling pretty fragile and her voice really buoyed me up. Even if our families are supportive of us (and I’m one of the fortunate in this dept.) NOBODY can understand this DD like you guys. I think it’s so important to reach out to each other. Thank you, C, I’ll be calling you as soon as I get my “bearings” here. And you DO know the Beetles. I’m impressed!!

    We’ve arrived at my parents and my Daddy was actually much more “chipper” than I expected. We’ve saved all the heavy talk for later and just enjoyed stories and photos last night. We kind of eased them into my limitations and they are being very loving. So, all is well today. But, trust me, I’m being cautious.

    Thank you all for your caring support.

    Great big Texas hugs,

  11. poets

    poets Member

    I'm glad to hear that you're doing better and hope things will continue to go smoothly for you.

  12. Missizzy

    Missizzy New Member

    I have very limited internet access but wanted to post and let everyone know that I soldiered through another 105 degree Texas day and came out reasonably OK. I feel so proud of myself that I made it all the way through a church service sitting next to my sweet Dad.

    I used earplugs (covered by a pretty hat) and took half a Klonopin 30 minutes before the service started. I think I did pretty well. My husband (bless his heart) is not a very religious man but I think he was praying his heart out that I'd make it through--and I DID!!! My Dad was just glowing as he introduced me to everyone. Without the earplugs I would have been levitating but with everything muffled and good A/C, it worked out.

    We're heading back to Oregon tomorrow but taking a more Northern route trying to find cooler weather. I'm so glad I made this trip even though it has been challenging. I've always learned that you have a tendency to forget the bad things and remember the good. I'm going to hold that thought. Tomorrow I say good-bye to my Daddy and I want to focus on that.

    C--I'll call as soon as I can. You are in my thoughts. I'm in such bad withdrawal I can almost feel myself sending emails in my sleep!! Stay in that water as much as you can.


  13. momof27

    momof27 New Member

    I remember my mom would hang the clothes on the line and when she got to one end of the line collecting the clothes because they were dry
  14. PainPainGoAway

    PainPainGoAway New Member

    That is soooo nice to hear your experience with your dad-- I'm sure today will be so hard for you. What a journey...you will remember the good I'm sure...

    I'm having a slow day...will check back in later.

    I use the skinny tubes -- those ice pops you buy from the shelf and freeze...I pack them around my back, on my neck or head...they refreeze easily and i've never popped one...the kids keep mine on the opposite end of the freezer...hey, whatever works!

    I also have a small fan that looks like a small trans. radio that runs on batteries that you can wear like a necklace...it has two areas that blow air...straight up to my face...i love it but don't remember where i got it ( i think a friend bought it for me)...it takes three AA batteries.

    left cell charger at friend's house...c. phone is dead. I have been trying to bounce back from my visit so just reading in bed today...low humidity and lower temps in the forcast for next few days...wish that could be sent your way-- it's so pleasant today.. although you wouldn't have wanted our storms, which have faded for the moment!

    Swimming has been so soothing and taking pressure off of the spine while floating is better than any pill! Wish I was in the pool now!

    of course i am so thanful for those pills!!!
    Have a safe journey back...

    [This Message was Edited on 06/16/2008]
  15. Missizzy

    Missizzy New Member

    Well, I knew it was bound to happen but I woke up wiped out today--buzzy and tremory. I knew the last couple of days of activity would catch up with me and they did.

    Today is the day I said my good-byes to my Daddy. Oh, it was so so hard. He gave us all my childhood picture slides (1000s) and several special mementos and then it was time to go. He's so small--less than 80 pounds now but was smiling and dapper looking in his Irish tam. The last thing he said to me was "the next time we see each other, we'll both be healed". That just took my breath away. He's right and I hadn't thought of that before.

    I smiled through my tears and touched his face and just kept telling him how much I love him. I'll not be the same again. But how happy I am that we did this. I'm leaving with a much lighter heart having seen him. The emotional stress is hard but I know I can rest now.

    I really appreciate being able to share this experience with all of you. I guess the lesson to be learned here, is that we can't let our health keep us from certain life-changing events. We have to push through (wisely and carefully) so we don't live with regret.

    We're in far West Texas right now at a rest stop. Can you believe that all the Texas rest stops have wi-fi? Cindy, your idea for ice pops makes me want one right now. That's the next stop!!

    Love to all,

  16. PainPainGoAway

    PainPainGoAway New Member

    Are you in Rosa's cantina????

    please tell me you get that...

  17. PainPainGoAway

    PainPainGoAway New Member

    i eat the green and blue ones and wear the rest.

    my heart aches for you but I am so thrilled that you did it! can't wiat to hear from you.
  18. PainPainGoAway

    PainPainGoAway New Member

    just checking in to see if you were able/up to posting...
    Rest up and keep smiling...let us know how you are if you can!

  19. Missizzy

    Missizzy New Member

    Hi All (and especially C)--Thank you Jam for the sweet words. I've missed seeing your posts. Take care, please, and let us know how the visit to Redwood City goes..

    Well, I'm sitting in front of a Wal-Mart in Taos, NM. I'm not quite sure how I got here--lol. I went to sleep somewhere in far West Texas (under the cantina, probably, smart aleck) and woke up in Santa Fe--far from I-40. My husband decided he'd had it with the heat and knew he could find a cool spot in Santa Fe, even in the summer. He was right as he found a lovely and COOL spot where we slept sooooo good.

    I hereby swear that I will never complain about the cold--NEVER. I guess we should have more fully anticipated the degree of heat we were going into, traveling to Texas in med-June after all. We just hadn't banked on how hard it was going to be to stay cool in a motor-home. I do believe, though, that I am more acclimated than I was last week. I've gotten out at several parks and view areas (oh, the Rio Grande is beautiful) and done OK. We're quite high in elevation here and I'm sure that's why we're only in the low 90's with 50's at night.

    I even got out at the coolest small town museum I've ever been to--the Post, Texas Historical Museum. Post was founded by none other that C.W. Post (of Post Toasties and Grape Nut fame). He was looking for a healthier climate for his many ailments. I found the history fascinating as he tried so many "cures". I kept wishing the poor man had had an internet family like we do.

    So, we're heading in the Oregon direction but moving much more slowly now. I have not been able to access much of anything by way of email and only occasionally have found access to the internet. Even though I'm not a Wal-Mart supporter, I'll have my husband go in and buy us a case of water as a thank you for being able to post this.

    Cindy, I have so many stories to tell you. Remember to ask me about our laundry adventure. I really hope I haven't offended any Texans on this Board as I lived there for 14 years myself. I just cannot seem to figure out how people smile through that blasted heat. Here I am in the thinnest cotton and linen stuff I own and those women were tooling through town in their huge black SUVs, with the window down, wearing all black clothes. I saw several get out and I honestly wanted to ask them what made them pick black denim to wear on a 110 degree day. Just wouldn't cross my mind to do that.

    Anyway, I'm alive and kicking and had me a nice cold beer a bit ago so I think I'll live. C, you made me laugh so hard about which Freezie Pops you eat and which you wear. So, do you re-freeze the ones you wear and let the kids have those? Waste not, want not.


  20. PainPainGoAway

    PainPainGoAway New Member

    I was born in
    the west Texas town of San Angelo myself...
    Glad to hear from you! You made quite a bit of progress...hope you're all nice and cool tonight...
    it's in the 50's here.

    I am rereading a book called ICE BOUND about Dr Jeri Neilson who survived breast cancer while in the south pole...it's cooled me off a bit! A good book, btw.

    I have my own corner in the right side of the freezer for my ice pops...yes, I use them over and over...no a/c in our van right now. They trade me the purple ones for pink and orange, it's a complicated system...sophisiticated as well!!

    Other than the heat, what other obstacles have you had? Do you get car sick?

    Do you fall out of the bed?
    Have you been knitting?
    Have you seen any bunnies? I like lizards too.
    Are ya missing the kiddis and doggies? I bet you are.

    Yes, I've taken my ambien and should probably get some sleep while you're riding along in your automobile (ok, RV), sitting beside your baby at the wheel...with no particular place to go...