Author Topic: My Husband Doesn't Get It  (Read 7858 times)

prunella

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Re: My Husband Doesn't Get It
« Reply #15 on: December 27, 2012, 06:33:08 PM »
Chrisb, I hate to think of giving up cycling.  It was one of the things DH and I shared. He always rode further and more often than I did, but we had a sweet routine of riding to the beach to get breakfast, usually with another couple.  For years, I have struggled to ride more than 25 miles. Just cannot do it no matter how much I train.  And no doctor could explain to me why.    I think it is Sjogren's.

I keep thinking that if I had a custom made bike, like a Seven, I could ride more.  That is not in my budget, but I keep dreaming.  I have a recumbent, but cannot get used to it.  I live in the north country so the sun intensity does not bother me that much.

I can imagine your pain and frustration. Wish I lived near so I could ride some  nice, slow miles with you. Maybe a 1/10 century?
Age 61; Blood type 0-; Sjogren's Dx 2005, sero-negative; plaquenil, 200-400mg/day; lunesta; vivelle dot; omega3, 4gm/day; CoQ10;  vit D3. Wheat free; dairy free. Homeopathy and acupuncture help enormously.

MaryBee7

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Re: My Husband Doesn't Get It
« Reply #16 on: December 27, 2012, 06:51:21 PM »
Sjodry - Your video is SO cool! Thanks for sharing it with us!  I wish I could "play around" and create such an awesome video! :-)

This is a wonderful video with relaxing music...but the best part is knowing it was made by a fellow Sjoggie.  A lesson in us sticking together!  I suggest husbands/wives/other family members watching this.  And maybe a reminder of "for better or worse".    ChrisB, please hang in there and know you are loved here!

eyeamdry

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Re: My Husband Doesn't Get It
« Reply #17 on: December 27, 2012, 08:42:55 PM »
It is fantastic!!

slccom

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Re: My Husband Doesn't Get It
« Reply #18 on: December 27, 2012, 10:09:03 PM »
Christain, they do sell a device that will power your bike. You could ride together but you get a gasoline-assist, which would let you continue your breakfasts. Ask at a bike shop about them.

Sharon

stick gal

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Re: My Husband Doesn't Get It
« Reply #19 on: December 28, 2012, 01:46:40 PM »
I will eventually have to make accommodations. Hubby sings a lot but even when he does I do backup on most of his songs. That I could do sitting down as well as some of the easier stuff I do. Thanks for the suggestions and I will make an effort to practice while sitting. Lol about your parents suggestion

Chrisb

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Re: My Husband Doesn't Get It
« Reply #20 on: December 28, 2012, 03:16:10 PM »
Chrisb, I hate to think of giving up cycling.  It was one of the things DH and I shared. He always rode further and more often than I did, but we had a sweet routine of riding to the beach to get breakfast, usually with another couple.  For years, I have struggled to ride more than 25 miles. Just cannot do it no matter how much I train.  And no doctor could explain to me why.    I think it is Sjogren's.

I keep thinking that if I had a custom made bike, like a Seven, I could ride more.  That is not in my budget, but I keep dreaming.  I have a recumbent, but cannot get used to it.  I live in the north country so the sun intensity does not bother me that much.

I can imagine your pain and frustration. Wish I lived near so I could ride some  nice, slow miles with you. Maybe a 1/10 century?

Hi You're a cyclist also! That's great. There's nothing like riding. I did buy some motorcycle glasses for riding and they seem to help.  We did 50 on the tandem yesterday.  I wouldn't be able to do that myself. I ended up getting fitted for the jersey but it was so depressing.  I look like a toothpick with skin hanging off. No more muscles like I had.  I'm 5'5" 106 lbs. 

I'm still thinking about taking the plaqeunil.  I don't have muscle fatigue or pain yet but I do have the dry eyes /dry mouth.  My eyes hurt the worst but the restates seems to help.

I read some reviews on plaquenil.  A lot of people have experienced really bad side effects.  I hate to lose any more of my hair.  It looks so thin now and just won't stop falling out.  Do you take plaque nil?

Chris and I were training for Mt. Marion ride.  He always does the Mt. Mitchell climb.  Have you heard of that?

Christian

slccom

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Re: My Husband Doesn't Get It
« Reply #21 on: December 28, 2012, 10:46:17 PM »
I will eventually have to make accommodations. Hubby sings a lot but even when he does I do backup on most of his songs. That I could do sitting down as well as some of the easier stuff I do. Thanks for the suggestions and I will make an effort to practice while sitting. Lol about your parents suggestion

It appears to be a unanimous opinion about my singing voice. My college roommate, a psych major, decided to give me positive reinforcement when I got the pitch right. It soon became clear that it was a strictly random event. My friends had me start playing my clarinet, too.

prunella

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Re: My Husband Doesn't Get It
« Reply #22 on: December 29, 2012, 11:00:59 AM »
Re: cycling and dry eyes

I usually wear wrap around sun glasses. Maui Jim's. I have a prescription for progressive lenses and there is distortion on the sides. But if you don't need prescription lenses, your options are broader.

I take fish oil, flaxseed oil, krill oil in large amounts--about 4000 IU. Daily.  I mix up the different oils, as I find them more effective that way. I notice dryer eyes if I miss 2 days.

Plaquenil may have made my thin hair thinner, but I take biotin to offset it. I only take 200 mg of plaquenil/day. I am 5'6", 120 lbs.   I see my eye doctor to monitor effects of plaquenil on peripheral vision-- which is very rare. 

Also, I know dairy products cause inflammation, which causes dryer eyes. So I avoid dairyproducts  with whey. Hard cheeses, such as parmesan and asiago, seem not to create problems.

The mountain assaults sound amazing!  Way out of my league.  I have had Sjs for over 20 years, so not been able to predict energy levels on a given day.  No competition for me, but lots of good rides in my neighborhood. 

Age 61; Blood type 0-; Sjogren's Dx 2005, sero-negative; plaquenil, 200-400mg/day; lunesta; vivelle dot; omega3, 4gm/day; CoQ10;  vit D3. Wheat free; dairy free. Homeopathy and acupuncture help enormously.

Tivia

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Re: My Husband Doesn't Get It
« Reply #23 on: December 29, 2012, 11:07:51 AM »
Quote
The mountain assaults sound amazing!  Way out of my league.  I have had Sjs for over 20 years, so not been able to predict energy levels on a given day.  No competition for me, but lots of good rides in my neighborhood. 

Wow amazing, I used to be really active up until this year now I am wasting away. I want to ride my bike again and go hiking etc, but I have become such a couch potato I would prob get cardiac arrest  :o

How do you handle the dry throat and mouth while riding. My throat feel like I swallowed sand sometimes, and my tongue has been burning and turning that red smooth look. Exercise makes me breathe harder and then I feel the dryness more. Do you take anything before riding that helps, I want to be fit again my body is wasting I look like im turning into Karen Carpenter. I mean I did need to lose a few pounds but man I lost like 30lbs

Lesley_x

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Re: My Husband Doesn't Get It
« Reply #24 on: December 29, 2012, 11:11:57 AM »
I had to give up cycling... More due to inflammatory bowel issues than sjogren's though. I am very bitter about this and hope to get back in the saddle one day.

I used to just carry eyedrops/biotene with me and wear good quality cycling glasses. I never struggled very much with dryness when riding so long as I had my drops.

I have this beautiful Specialized Secteur Comp road bike sitting in my spare bedroom gathering dust for the past two summers :(

For what it's worth though, when I was exercising it helped tremendously with fatigue and joint pain... just my guts let me down.

Tivia

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Re: My Husband Doesn't Get It
« Reply #25 on: December 29, 2012, 11:35:03 AM »
I had to give up cycling... More due to inflammatory bowel issues than sjogren's though. I am very bitter about this and hope to get back in the saddle one day.

I used to just carry eyedrops/biotene with me and wear good quality cycling glasses. I never struggled very much with dryness when riding so long as I had my drops.

I have this beautiful Specialized Secteur Comp road bike sitting in my spare bedroom gathering dust for the past two summers :(

For what it's worth though, when I was exercising it helped tremendously with fatigue and joint pain... just my guts let me down.


I love Specialized mine is a clothes rack now lol in the other bedroom also. I hear ya on the never going to know what a 100 percent feels like, I have been sick with chronic illness since I was a child. Although that was under control for the most part, there were times they though I would die from fulminant UC and megacolon, but it receded and left me with a pretty normal life. This new illness even though it dont seem to have the emergency factor like my UC did, is way more debilitating.

 If someone would have told me about sjogrens years ago I would have snorted and said ..oh yeah try living with your intestines sloughing off inside you and bleeding to death and indescribable pain in your gut. Now I see that sjs is actually worse imo. I remiss most of the time with IBD, and its not really progressive, sjogrens on the other hand may never remission and it will always progress. Involving some pretty important organs and functions. Since its always there and active sjs makes you always feel lousy.

Chrisb

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Re: My Husband Doesn't Get It
« Reply #26 on: December 29, 2012, 12:10:52 PM »
I have a bianchi. I love, love riding. I bought the motorcycle googles to help. I may need to get the prescription glasses soon. Before I ride, I put Vaseline in my ears and nose. Then I bring my drops and drink a lot of water.


I really miss riding like I did. Before I knew I had this stupid disease my husband I got the chance to ride 65 in the moutains. It was hard but amaizingly fun.

I wish I knew if I took plaquenil it would halt the progression.
« Last Edit: December 29, 2012, 12:19:56 PM by Chrisb »

CMNK12

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Re: My Husband Doesn't Get It
« Reply #27 on: December 29, 2012, 01:09:21 PM »
never will know until you try? have you talked to your doctor about your fears related to the plaquenil? what are the other options he/she can offer you? Hey, it is about you living your life to the optimal fullest that you can with sjogrens. Doctors are people like us with fears and families and hobbies. Sometimes you just have to tell them how it (sjogrens) is changing your life. Break it down for them, if they don't listen, time for a new doctor. Seize the day. CK

prunella

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Re: My Husband Doesn't Get It
« Reply #28 on: December 29, 2012, 02:33:20 PM »
Wistful bicycle thoughts!

I ride a Canondale road bike that I love.  But I still want a Bianchi. I have lusted after a certain vintage Bianchi, but I realized that I wouldn't like the gear levers. Somehow I keep thinking a steel bike would be that much more comfortable.
And I regret that I didn't keep a 1977 steel Motobecane, but DH says the geometry  was wrong for me.
He rides recumbents and thinks I should too. 

Age 61; Blood type 0-; Sjogren's Dx 2005, sero-negative; plaquenil, 200-400mg/day; lunesta; vivelle dot; omega3, 4gm/day; CoQ10;  vit D3. Wheat free; dairy free. Homeopathy and acupuncture help enormously.

prunella

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Re: My Husband Doesn't Get It
« Reply #29 on: December 29, 2012, 02:52:11 PM »
Sjodry, the video is great!
I would like to offer a bit of hope and point out that not all of us have all the possible symptoms.
And my rheumy says that the people who have been diagnosed, but who test as sero negative, are less likely to become extremely ill.

Age 61; Blood type 0-; Sjogren's Dx 2005, sero-negative; plaquenil, 200-400mg/day; lunesta; vivelle dot; omega3, 4gm/day; CoQ10;  vit D3. Wheat free; dairy free. Homeopathy and acupuncture help enormously.