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Sjogrens Topics => Living Life In Spite of Sjogren's => Topic started by: Tivia on September 18, 2012, 09:30:38 AM

Title: Winter cometh
Post by: Tivia on September 18, 2012, 09:30:38 AM
Well it's coming and I can see I am not prepared lol
The temps have dropped considerably overnight low 40's, so naturally I did what I do every year...test run the furnace to make sure everything is working O_O

Well the furnace works but man did my house dry out, I like to keep it around 65% humidity since getting SjS. Well after kicking on the furnace for 5 min my humidity monitor dropped to 28% :o And boy could I tell it, seemed like all the little moisture I had in my body got sucked right out.

How do you deal with this in winter, I can use skin creams but they feel suffocating on my skin, and my eyes and mouth are a desert now...I cant imagine what a whole season of cold weather is going to be like lol

One other thing, does evoxac help anyone else with a dry trachea, that is a big problem for me. Or is it just mainly the mouth is helps?
Title: Re: Winter cometh
Post by: sleepmonkey on September 18, 2012, 11:59:35 AM
I suffer a lot in winter. We have 2 tower-style humidifiers at opposite ends of the house, but I need one for my bedroom, looking for UV, but can't find one.

I just bought Aveeno Intense Relief hand lotion, I really like it, no greasy or lotion-y feeling, stays on after multiple washings.

I have had a sore throat for at least 6 weeks (worse with back to back viral infections during that period) - what is your dry trachea like? I used to produce lots of saliva but recently realized I am not producing as much. Also feel like something is stuck in my throat and some foods are hard to swallow.

Seeing ENT on Thursday.
Title: Re: Winter cometh
Post by: Joe S. on September 18, 2012, 01:09:26 PM
We have a whole house humidifier.
Title: Re: Winter cometh
Post by: Tivia on September 18, 2012, 02:47:24 PM
Well sleepy my windpipe hurts, when air passes over it it feels like kinda a cutting burning feeling to me, I could handle that its the way I feel like I am being smothered that gets to me. But thats prob more anxiety than sjogrens. I seem to be extremely emotional now since all the changes with this illness. It just happened so fast to me I am still trying to come to terms.

I would like a whole house humidifier, but I want to move no way I want to stay all alone where I am. I am afraid takes emergency people 20  min to get here, not to mention the drive to the nearest hospital  is about 45 min to an hour. I just dont feel secure about that now.
Title: Re: Winter cometh
Post by: Joe S. on September 18, 2012, 06:26:29 PM
The heat came on tonight.
Title: Re: Winter cometh
Post by: eyeamdry on September 18, 2012, 08:29:55 PM
I've been having our AC on, but something tells me should be furnace.  I will do that when I can open the windows and doors and do a "blow out" of my furnace pipes.  I hate the first blast of heat, smells musty, nasty and takes my breath away.  Note to self:  Also get humidifiers out soon.  Can wait a little while on that. 
Title: Re: Winter cometh
Post by: eyeamdry on September 18, 2012, 08:33:53 PM
I do too, get dry windpipe.  Not too bad during the day, but at night it's awful because it wakes you up because air won't go back and forth.  I use Oral Balance dry mouth paste and put a glob on my tongue before bed for moisture and also use dry mouth lozenges I find at Walgreens.  I have to have one or the other and like to have both on hand for when I sleep.  I might take 3 lozenges thru the night or, 3 hits of the Oral Balance.  Both are dreadfully expensive.  Lucy
Title: Re: Winter cometh
Post by: Joe S. on September 19, 2012, 04:28:49 AM
Time to wear your polar fleece mumps scarf to bed.
Title: Re: Winter cometh
Post by: Tivia on September 19, 2012, 07:44:09 AM
I hear people get the swelling, I have not yet. But I did notice some sharp pain in that area just real quick sharp pain nothing that lasted. Oh and my nodes under my jaw are tender, that seems to come and go.
Title: Re: Winter cometh
Post by: Joe S. on September 19, 2012, 09:00:07 AM
As I said, Time to wear your polar fleece mumps scarf to bed.
Title: Re: Winter cometh
Post by: Tivia on September 19, 2012, 09:22:36 AM
As I said, Time to wear your polar fleece mumps scarf to bed.

oh dear does that mean cold effects the glands there  :(..well I guess I better invest in some warm muffs
Title: Re: Winter cometh
Post by: Joe S. on September 19, 2012, 10:34:40 AM
Ear muffs do not cover enough. That is why I suggest polar fleece mumps scarf.
Title: Re: Winter cometh
Post by: engy on September 19, 2012, 11:30:12 AM
Joe, I agree, I use scarf frequently thanks to your advice!!
Title: Re: Winter cometh
Post by: cargillwitch on September 20, 2012, 10:25:11 AM
I second the scarf!

 I live in Canada on a farm-  going out to do chores at 5am in -30 degree weather ( -40 odd with windchill) sends my glands into instant shock and excruciating pain.

scarves save the day ( and feel real cozy at night!)
Title: Re: Winter cometh
Post by: Iwantmylifeback on September 23, 2012, 08:33:02 AM
Whole house humidifiers are realitively inexpensive to install on your furnace.  They really do make a difference.  You must however change the filters on them yearly to get the best results.  Our last one was $125 and I installed it myself.  We are in an apartment now with electric heat, last year was a very mild winter so dryness was not a big issue.  Feel like this one is gonna be a bugger!!!  Just really make sure to clean clean clean the humidifiers weekly.  We saw so many patients in the ER who never cleaned them and kept reinfecting themselves with the mold in the machines.  It is a good preventative measure.
Snowed in Colorado in the mountains already  :(
Title: Re: Winter cometh
Post by: Joe S. on September 23, 2012, 09:11:08 AM
Snow is a 4 letter word. So is cold, rain, damp. I do not know why the sensors do not bleep them. Oh well do all that you can to stay comfortable.
Title: Re: Winter cometh
Post by: Tivia on September 23, 2012, 12:10:43 PM
Oh nice you can install a whole house humidifier yourself. Well if its that easy maybe I will go check them out. I def feel better with some moisture in the air. But omg cold air hurts my fingers really bad, they go all tingly and cold. I dont have raynauds though, I dont get that blue off color look. Just feels like I guess frostbite lol.. my toes too.

If I sit too long my feet feel numb and tingly raynauds dont affect feet right? so it wouldnt be that
Title: Re: Winter cometh
Post by: Katybarstool on September 23, 2012, 12:21:19 PM
Tivia

Raynaud's does affect feet. In fact, my feet have been affected for about 6 or 7 years, whereas my hands and nose have only been affected for 3 or 4 years. Guess we are all different.

Kathyx

Title: Re: Winter cometh
Post by: Tivia on September 23, 2012, 12:49:32 PM
Tivia

Raynaud's does affect feet. In fact, my feet have been affected for about 6 or 7 years, whereas my hands and nose have only been affected for 3 or 4 years. Guess we are all different.

Kathyx

Oh dear, but dont you have like blue color to your fingers and toes then? I am thinking maybe mine is caused by some peripheral neuropathy. I will talk to the dr, but most likely will get the well put socks on and move more response...yeah but they tingle when I walk and ride a bike too.
Title: Re: Winter cometh
Post by: irish on September 23, 2012, 09:24:50 PM
I get the painful fingers every December when it gets cold. They usually last about 1 month or so. I don't have Reynauds, and I don't have any change in color, but they feel cold and get the prickly, painful feelings.

I usually sit with a blanket over my lap and then warm my rice bag in the microwave and place it in my lap. I cover the bag so I don't burn myself and lay my hands on the bag. Ooooohhhhhh, that is so wonderful and eases the pain.

I have gotten so I think that when it gets cold my body or fingers get shocked by the change in the temp. After a while it doesn't bother unless the temp gets really low. Heaven help us if we have a cold and snowy winter. We have had such warm winters lately that it isn't normal. We will faint trying to pay the fuel bill. Good luck all. Irish

P.S. My flowers froze some last night for the first time. I live south of Joe so he has had colder weather. Our furnace hasn't run yet, but we have an Edenpure heater that we move around the house and run in the bedroom at night with door partly closed. They are really great.
Title: Re: Winter cometh
Post by: Tivia on September 24, 2012, 06:50:15 AM
I get the painful fingers every December when it gets cold. They usually last about 1 month or so. I don't have Reynauds, and I don't have any change in color, but they feel cold and get the prickly, painful feelings.

I usually sit with a blanket over my lap and then warm my rice bag in the microwave and place it in my lap. I cover the bag so I don't burn myself and lay my hands on the bag. Ooooohhhhhh, that is so wonderful and eases the pain.

I have gotten so I think that when it gets cold my body or fingers get shocked by the change in the temp. After a while it doesn't bother unless the temp gets really low. Heaven help us if we have a cold and snowy winter. We have had such warm winters lately that it isn't normal. We will faint trying to pay the fuel bill. Good luck all. Irish

P.S. My flowers froze some last night for the first time. I live south of Joe so he has had colder weather. Our furnace hasn't run yet, but we have an Edenpure heater that we move around the house and run in the bedroom at night with door partly closed. They are really great.


Oo see thats how my fingers get, I hate winter so much god I dont know how I am going to deal with it now that I am sicker than ever. Sorry to hear about your flowers, its painful to see the world die back in winter, I guess I was never a 4 season person I prefer eternal spring lol

It got really cold a few nights and I had to turn on the heat..oh what a mistake..I insta dried out...I think winter will mummify me  :o
Title: Re: Winter cometh
Post by: Meld256 on September 24, 2012, 09:51:35 AM
Tivia,

I think lots of us don't look forward to the colder weather. It just makes all our symptoms worse. We all have our little tricks for getting through it.

I'm sorry you're not doing well lately. Must make dreading the cold worse.

By the way, here in SE Kentucky we've received a "cold blast" the last 2 nights.  38 degrees and 36 degrees; brrrr!!  And sadly, it was time to turn on the heat.

Melinda
Title: Re: Winter cometh
Post by: Tivia on September 24, 2012, 10:48:55 AM
Hey Mel, I am ok some some days I think it was the initial shock of the diagnosis that make me so angry and sad..and you know that leads to depression yada yada. The kicker was last week on my endo visit I find out I have the start of type 1.5 diabetes. That really blew me away, my Dad died from complications to diabetes, he suffered a lot with the illness. And I dread what the future holds, not looking forward to the shots all the time.

As of right now its a honeymoon phase the endo said, he said I cant stop it from happening its already in me, just wait and see when it goes to complete insulin fail. But on a good note I hope..my eye doctor agreed to try plugs in my lower ducts /crosses fingers
I hope they help with winter dryness.
Title: Re: Winter cometh
Post by: xANTHONYx on September 24, 2012, 11:01:26 AM
Hmm...

I guess I am just all sorts of backwards but I tend to prefer the Winter. Except for the whole digging the car out in the morning thing and occasionally having to help push RWD cars through the intersections on the way to school.

I sleep much better in the winter when I bury in to the covers. I can wear some sort of insulated clothing and keep my joints warm without sweating like a wiseguy in the trunk of a Lincoln. Long sleeves and shorter days also keep me from getting sunburned quite so bad which is probably the worst symptom I have.

Also, I have had multiple heart surgeries and I notice I can breathe better in the winter. This is because cold air is condensed and contains more oxygen for a given volume. When I get hot I get weak, which doesn't happen much in 180 year old granite walled lecture halls in the Midwest US. I will admit that it sometimes dips below -10F (~-23C) at night which makes my sternum ache where it was wired shut.

The worst thing is when you go visit someone who freezes all winter and they have their heat turned up to 85F (~29C). That, and carrying around a coat while indoors. Being on a large campus, the first snow also brings out the "OMG! it's a snowflake, we are going to die" and the "I own an SUV, nothing is going to change my world" drivers that inevitably cause chaos during rush hour.
Title: Re: Winter cometh
Post by: Joe S. on September 24, 2012, 02:32:26 PM
I remember flying out in late December to have Christmas with my mother in Phoenix one year when both the girls were still at home. When we flew out of Fargo it was 86F below zero When we arrived in Phoenix it was 86F above. We were running around Phoenix in our summer clothes. The natives we running around in there winter clothes. For some reason people thought we were from Alaska or the Yukon Territory.
Title: Re: Winter cometh
Post by: irish on September 24, 2012, 10:13:49 PM
I am one of those people who likes the cooler temps and really has always enjoyed winter. I just can't take the high heat and humidity. With my myasthenia gravis it makes me weaker and I feel like a wilted petunia!

When the temp is in the 60's I am happy. I can breath better then also. I love the cool fall and springs. I have always enjoyed a good Minnesota winter, especially when family is all home and safe. I love to watch the snow fall and blow and see the sun dogs when it is cold with the ice crystals in the air. However, my husband has long ago gotten over his enjoyment of plowing out our driveway ad yard in the country cause it takes at least 4 hour at a minimum. By the time he is done sometimes he has to start over.

Just hope everyone can stay healthy and safe over the winter. Irish
Title: Re: Winter cometh
Post by: Byn on September 24, 2012, 10:17:43 PM
The Allergist told me to get a humidifier.  Have fun with it and use scents - like Lemongrass or something
Title: Re: Winter cometh
Post by: Joe S. on September 25, 2012, 05:28:07 AM
Last March, I saw one young gal from WY that had Raynauds so bad it tracked past her shoulder and past her hip. It took hours to stop her flair with warm covers and two people doing Reiki on her. Usually I only see it on fingers and hands, toes and feet. I do not know if she will make the trip this year.
Title: Re: Winter cometh
Post by: Luna on September 30, 2012, 03:17:28 PM
Lucky me, my hubby works on Ac and heat for a living. So my stuff is always working well. I live in the south, so a house humidifier is not a good idea. It does get dry here, but not enough for the humidifier.  We would have mold problems with a house humidifier. I cannot deal with mold. So I use personal ones.. Love my blankets.. Especially the electric one. I drink lots of hot tea and snuggle ...I love winter, but it makes me hurt a lot to be cold. I have my scarf Joe. Thank you for suggesting that to us.. I would not have thought of it. Love the rice bag idea also. will be getting one soon. I use nose gel and drink warm tea use personal humidifier for the dryness and stay as warm as possible for the pain. Hope everyone up north is ready.

Im ready for the cold weather..

Luna