Re: I feel miserable

[Guest guest]

Hi Judy,

I understand how you feel as I feel like that sometimes also

as I am sure many on the list do.......but try to hang in there with

the rest of us and think positive! One day, there WILL be a cure

for this Sarc Monster and who knows???--- perhaps someone on

the list will discover it! Wouldn't that be great? In the meantime,

you have every right to feel bad so you just cover up with a warm

blankie, watch tv or listen to soft music, and just think good

things.........wish I could cure you and all the others, but I am in

the same boat as all of you, so.......we just keep fighting.

Sending lots of hugs,

Darlene

NS Co-Owner/Moderator

I have been having a really bad time of it.The cold is really getting to me, am having lots of spinal pain.I just feel miserable and I can't seem to get warm.I am tired of just feeling lousy.

Judy in PA

[Guest guest]

Hi, Judy. I'm sorry you are having such a difficult time. Back in the winter of 81-82 (I think), we were living in a poorly insulated house in Indiana, with oil heat, which was real expensive even then. It was the coldest winter in years. We could never afford to fill up the oil tank, so we got about a 100 gal. a week, which cost $130. So we were spending $130 a week on oil, and still were cold. We kept the thermostat at about 60 most of the time & turned it down as low as it would go at night, I think it was 54. My husband & I slept in a heated waterbed, and my kids all had electric blankets, so we were okay at night. And they were so active playing that they didn't seem to get very cold. But I had to wear mittens just to read the paper! One night we had friends over & I turned up the thermostat to 70, so it felt pretty warm to me. But my girlfriend spent most of the evening standing or sitting on one of the floor registers! We didn't have a garage, so many times I had to clean ice & snow off my car. I was working as a labor & delivery nurse at the time. At work I would wear thermal underwear, a t-shirt, scrubs & a cover gown and I was still cold. I would often get a warm blanket from the blanket warmer (for the moms) & wrap up in it. It seemed that once I got chilled, like cleaning off the car, I just couldn't get warm, even at the hospital, which was nice & warm. Then I would have to go get into my cold car & drive home. I worked 3-11 shift, so usually everyone was in bed when I got home. During the day I kept my pajamas & some socks stuffed alongside my waterbed mattress so they were warm. I'd change clothes as fast as I could & jump into bed. That's the only place that I could get warmed up. Oh, at night I stuffed my bra & underwear in the bed, because they felt like ice coming out of the dresser in the morning!

One night the temperature was -20 or -30, with wind chill making it -60. I lay awake nearly all night, hearing the furnace running constantly. It seemed that I could actually hear the oil draining out of the tank. One week we miscalculated how much oil we had & ran out on a Saturday. We couldn't get anyone out until Monday, so we all had to go stay at my parents', dog & cat included.

So, the point of this story (and I do have a point, Ellen Degeneres) is that I vowed to move from Indiana to a warm place. We were already planning to move to Mississippi for my nurse-midwifery education, and I swore that I would Never Be Cold Again! Kind of like Scarlett O'Hara in Gone With the Wind. I would never live in Indiana again & would never visit in the winter. Well . . . . . . we lived in Missippippi for 3 years, then moved to the Rio Grande Valley in south Texas (just north of Mexico). We lived there for 2 years & only had to turn on the heat once in all that time. By then I was getting a little tired of the weather & missing the change of seasons, especially fall. We then moved to San . After 2 years, I got a job offer in , Indiana, working with an ob-gyn who had been a resident back when I worked as an L & D nurse. I knew I would love working with her, and it was a chance to actually start a nurse-midwifery practice. Before I had always worked in established practices. My husband & I talked about it & he reminded me of that last winter in Indiana. So I said I'll do it, but we have to have a well-insulated house, with gas or electric heat, be able to afford to keep it warm, and have an attached garage with an opener! He was fine with it, and that's what we did. I've been here 17 years now, and have never regretted it. Go figure. I don't even have any desire to move south for my later years.

Now, hopefully, reading all that might have distracted you a bit from your misery. I do have a couple of practical suggestions. As I've said before, the only part of me now that suffers from the cold is my feet. With the neuropathy, if they are even a little cool, they hurt a lot worse. Summer is almost worse than winter, because of the air conditioning. I have to wear socks with sandals, which my kids think is hysterical. Anyway, to keep my feet warm, I have several tricks. If I'm going to have to be out & about, in & out of the car, or taking a longer trip, like to Indy (about 45 min.), I use the disposable handwarmers made for hunters. Walmart usually has them with 2 pair in a pack for about $l.25. They also have foot warmers, but the handwarmers are cheaper & stay warm longer. They are usually in the sporting goods dept., but the store here has them at the checkouts. You just open the package, shake the little packet & it starts warming up. They will stay warm for 10+ hrs. I tuck them under the arch of my foot in my shoes, or if I'm using them at home, I wear two pair of socks & tuck them between the socks, on top of my feet. Even though they are pretty inexpensive, it does add up, so mostly at home I use rice socks. For bigger ones, you take a tube sock (I buy a cheap pack of men's socks) & fill it with the cheapest rice you can find. Leave enough of the sock to tie a knot. You can heat them in the microwave for 3-4 min. depending on the size, and use them over & over. You can usually apply them directly to your skin. We use them for neck tension, menstrual cramps, etc. But I also use them for my feet, wrapped in a couple of fleece blankets. Now this year I made some very small rice socks, using some of my old socks. These are small enough that I can tuck them between my socks just like the handwarmers. I have to be careful with the temperature because of the neuropathy. I also have to make sure I don't leave them lying around, even on the kitchen counter, because my maniac dog B.J., a beagle mix, will snatch them, take them outside & chew them open.

Judy, if you have a dryer, here's another idea. I do this when I'm using my hot tub on a really cold night. Before I go out to the tub, I put my pj's, a couple pair of socks (I use the nice thick white men's socks with the gray soles), my towel & a couple of fleece throws in the dryer. Then when I get out, I run in, dry off & dress in the bathroom where the dryer is because it's nice & warm in there. I put my warm socks on, settle into my recliner with the warm blankets wrapped around my feet, and it's bliss. You might try warming a couple of blankets & heating a large rice sock in the microwave, then wrapping yourself up in the blankets, with the rice sock inside as a heater, maybe drink some hot tea to warm up the insides. I even keep a lightweight pair of gloves by my chair because my hands are starting to get cold-sensitive, and since I still need a fan blowing in my face, the gloves keep my hands warm but I can still read, do crosswords, etc.

If you don't have a microwave, you can get a small one for $30-40. If you don't have a dryer, maybe you can think of another way to heat your blankets. I actually have a dryer that I'm not using, if someone could come pick it up! I also used to have an electric mattress pad, which you put on the mattress, under the sheets. I liked it better than an electric blanket, because I didn't have to worry about it getting bunched up & becoming a fire hazard. I had it on a timer, so that my bed was warm when I was ready to sleep. I also kept my pj's under my covers, so they were warm! I really liked it, until my temperature control went haywire 3-4 years ago. Then I couldn't even stand my flannel sheets, so I gave my sheets & mattress pad to my daughter.

Judy, I hope these suggestions are helpful, or trigger other ideas to overcome this chilly winter. Oh, I forgot to ask if your house itself is warm, with good seals on the windows & doors. I filled a couple of long socks with kitty litter to seal a crack at the bottom of my front door. I figured B.J. wouldn't bother stealing them since there wasn't any food in them. So far, so good. It was very easy & inexpensive to do. Some places I've lived, I've taped plastic sheeting over windows that weren't airtight. It can make a huge difference. I wish my home had the floor heating. I've been in homes like that, and it felt wonderful. In my house, even wearing 2 socks & slippers, my feet get cold just walking around my house.

Well, I guess this letter is long enough. You're probably asleep by now!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: I feel miserableDate: Mon, 05 Feb 2007 17:41:28 -0000

I have been having a really bad time of it.The cold is really getting to me, am having lots of spinal pain.I just feel miserable and I can't seem to get warm.I am tired of just feeling lousy.Judy in PA

Check out all that glitters with the MSN Entertainment Guide to the Academy Awards®

[Guest guest]

Judy,

Winter can be so difficult, as the cold and having to stay indoors makes one rather claustrophobic. I do hope that you have some hobbies or at least a tv show or book to take you away.

I do hope that you were able to get the MSM and that it helps with that spine pain. I know how hard it is when every nerve in our backs is inflammed.

Can you do ice packs? This is the one way that brings inflammation down fast, and then you get the increased circulation to help with healing---- when you start to warm back up. I have a couple of really big icepacks-- I got them from my DC. They are wonderful, and I use them regularly.

Take care, and know we're here for you.

Hugs,

Tracie

[Guest guest]

Hey

Judy,

I’m

right there with you believe me, we don’t usually have these really cold

temps here in Colorado,

and they are getting to me. So if it helps “I Feel your pain”, I am

just staying in and staying warm, and waiting for the insurance company to

decide my life once again, in the mean time a nice nap in a nice warm bed

has done wonders for my pain. I also have a heated throw blanket for my chair

where I can sit and watch TV and keep warm makes such a difference, so stay

warm, and hope you get to feeling better real soon! J

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Judy

Sent: Monday, February 05, 2007

10:41 AM

To: Neurosarcoidosis

Subject: I feel

miserable

I have been having a really bad time of it.

The cold is really getting to me, am having lots of spinal pain.

I just feel miserable and I can't seem to get warm.

I am tired of just feeling lousy.

Judy in PA

[Guest guest]

Judy, Here the cold is just frigid too. It wrecks havoc with the body. I know there's nothing we can do or say to help you with your pain. But as everyone has been saying , wrap up in a nice warm blanket, (I like to read) , I take a book and a nice cup of hot tea and try to relax. Try wearing warm layers of clothes and a couple of pairs of warm socks. Wish you luck and warmness! Debbie T.Co-ModeratorJudy wrote: I have been having a really bad time of it.The cold is really getting to me, am having lots of spinal pain.I just feel miserable and I can't seem to get warm.I am tired of just feeling lousy.Judy in PA~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis

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[Guest guest]

When I go out in the cold especially if the wind is blowing I have

to wrap a scarf around my face otherwise the pain becomes more

intense. I'm so sorry your having a rough time. Hang in there

hopefully it will warm up in your part of the country soon. Will say

a prayer for you and everyone else and will pray that it warms up

soon.

Kimber

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> > I have been having a really bad time of it.

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> > The cold is really getting to me, am having lots of spinal pain.

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> > I just feel miserable and I can't seem to get warm.

> >

> > I am tired of just feeling lousy.

> >

> > Judy in PA

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> >

> >

>

[Guest guest]

I want to thank each of you for all the suggestions and sipport you have given me. I have been using your suggestions and they have really helped. Tracie, the MSM came today, took my first dose this evening. Wow!!! It sure is bitter. I mixed it with 1/4 cup of fruit punch juice. I usually don't like it but ita did help to cover some of the bitter taste. I am feeling somewhat better. I went for my weekly IV of iron and Aranesp. The hematologist changed from Procrit to the Aranesp because it was not as expensive as procrit. I casually asked the nurse what it cost for my weekly IV, I almost fell ouit of the chair when she told me the Medine cost was $2000.00 for each dose. I am really lucky that I have great supplemental insurance. So far Medicare and my secondary insurance has been paying for the meds and IV. We went to home depot today and purchased what I call an

electric broom. It's very light and is great for picking a small things that fall on the carpet. I can't use our vacumn because it is to powerfull. Because of my leg problems (23 surgeries in 2 1/2 years.) We received the book that was suggested, Beyond Chaos, Lining with a chronicly ill wife. My husband is really enjoying the book. Thanks for sugesting it. I will read it when he is done. The house is much warmer now, we took you suggestions and also got out our humidifier. It's like a miracle the temperature went up 5 degrees from the added moisture. Life doesn't doesn't seem so bleak. Spinal pain is decreasing. I want to think each of you who came to my aid and support. It really helped alot. I have had this disease since 1971 sometimes it just gets to me. Know

that you are all in my thoughts and prayers, together we will win this battel. Thaqnk you all again. Hugs, Judy in PA