Hi All,
Merry Christmas! I told myself that I would have a good day for the kids but....
My husband and I were both cyclist. He still rides and is on a racing team. Anyhow my company sponsored him and now I'm eligible for a jersey because I Was a cyclist also. He gives me a card and tells me how much he loves me and says we're going tomorrow to get me fitted for a jersey to ride this spring and summer. I didn't say anything and then later asked him if he has been listening to me regarding sjogrens, the sun, plaquenil. He says he doesn't believe it and I can still ride. I don't know how I can ride when my eyes dry out so bad, I can't be in the sun during the day and summer. I told him he's in denial and he said I just don't want to do it.
He just doesn't want to face the fact that I've changed. It's hard enough to know that I have but also having to keep proving it is even harder.
Christian
Merry Christmas Christian :)
First off I hope you are having a good day with family and friends celebrating the holiday.
Here is my question, has your husband ever been in the room with the doctor explaining you illness? Maybe he thinks if he gets you motivated like before you can beat back the disease? Or maybe he really is in denial I dont know. But I think its important for the rheumatologist to explain to both of you what having sjogrens might mean for you specifically. I have this issue people think I am making up the whole seriousness of the illness, because they dont hear the doctor they arent in the room.
As an athlete, your husband may be aware of the 5 cents of media coverage Williams had regarding SJS and her tennis career. "If she can do it...well??" When SJS was mentioned in articles about Williams, I felt it would be further misunderstood, dismissed out of hand..something you can control and "get over". Again symptoms and effects are different per patient/ treatment.
I would take some quiet time to reflect on how YOU feel about cycling. Is this something you no longer want to do?
As this is something the two of you have done together, your husband will feel the loss of you presence. Chronic illness affects the family, not only the patient. I have honestly asked my husband if he misses me, he knew I meant the vivacious person I was...He honestly answered "Yes". By asking the question I let out my fear that I was now "boring" ( I was never home before, just out and about adventuring..lol) and it gave the man I love permission to express his feelings, sadness at the loss of his adventuress.
I also encourage him to pursue things without me. No I was not going on the motorcycle (which was my idea to get..to adventure..lol) and get stuck somewhere. So I found a group that he joined and he goes on trips, some for two weeks at a time. Everything is plotted and posted, so from home I get to follow along. He makes note of places he wants to take me to in the car.
This let him know I was not feeling "left out", abandoned.
He will learn about your illness and you will need to learn of his emotional/physical loss as well.
Just something to think about.
My 70 year old rheumatologist has Sjogrens. My husband asked her why she can handle a medical practice and I can hardly get out of bed. She dr explained how some us were further along in our treatment (her) and others do not have conditions as well controlled.
Lucy
Merry Christmas all! Well, Christian, at least he is trying. He may not understand what you are going through, he did show you that he loves you with a sweet card and thoughtful gift. You should get fitted anyway. It is a way for you guys to bond from his perspective. You never know what the spring will be like for you. You might be able to tolerate evening rides when the sun is low. Wearing goggles can help with the wind.
At least he made an effort. My husband didn't get me anything for Christmas, not even a card or heartfelt expression of anything. See? Could have been worse.
Hi ChrisB.
I was messing around trying to teach myself how to blog and also how to market my business with videos.
For the heck of it, I made a video about a day in my life with Sjogrens. I have been shocked at the number of folks
who have contacted me & told me that their spouse did not "get it" & my video helped them to explain SJS to their spouse. While I created it with
my wacky sense of humor, it is also very truthful without exaggeration.
Check it out: http://sjodry.wordpress.com/category/videos/ (A Day In The Life of SjoDry)
Good Luck. It may take a while, but he will get it.
SjoDry
Sjodry - Your video is SO cool! Thanks for sharing it with us! I wish I could "play around" and create such an awesome video! :-)
SoDry that made me cry..well try too. Why do people think its only a minor annoyance, that makes me so upset. People around me go ..oh stop being a baby its just dry mouth a little tiredness :(
I am like yeah why dont you get the disease then talk. I am sorry I wouldnt wish this on anyone...but for one week I would like them to experience the full effect of sjs.
Chris my Husband is exactly the same. I am constantly having to justify myself to him which really hurts my feelings he wants me to carry on doing everything exactly how I did and pretend there is nothing wrong.
My hubby struggles too. We play music together and the equipment loading and unloading plus 4 hours on my feet onstage are beginning to be too much. We have hired folks to help hubby load and such but I have ra in my feet and the pain is becoming too much. I have trouble singing well in a sitting position so it is difficult to find an answer other than quitting. I've encouraged him to find a good band to play with but he wants us to continue. It's sweet but is also a lack of understanding of the pain and fatigue
Quote from: Ark mom on December 25, 2012, 02:45:29 PM
Merry Christmas all! Well, Christian, at least he is trying. He may not understand what you are going through, he did show you that he loves you with a sweet card and thoughtful gift. You should get fitted anyway. It is a way for you guys to bond from his perspective. You never know what the spring will be like for you. You might be able to tolerate evening rides when the sun is low. Wearing goggles can help with the wind.
At least he made an effort. My husband didn't get me anything for Christmas, not even a card or heartfelt expression of anything. See? Could have been worse.
I'm guessing that you wouldn't have liked what he said in an honest "heartfelt expression." You know what? His attitude is his loss. You are a wonderful and special person, and he is the one missing out.
Hugs, Sharon
Quote from: stick gal on December 27, 2012, 12:13:20 PM
My hubby struggles too. We play music together and the equipment loading and unloading plus 4 hours on my feet onstage are beginning to be too much. We have hired folks to help hubby load and such but I have ra in my feet and the pain is becoming too much. I have trouble singing well in a sitting position so it is difficult to find an answer other than quitting. I've encouraged him to find a good band to play with but he wants us to continue. It's sweet but is also a lack of understanding of the pain and fatigue
Are you singing all the time? Could you sit when you aren't singing? And could you practice singing sitting down? Or try a tall stool. I play bass clarinet mostly, and instrumental musicians learn to breathe sitting down. Could you have numbers that are all instrumental when you could sit? Add in another singer and share the load?
I play clarinets, the bigger the better, because my parents used to listen to me sing along to the player piano and decided to encourage me to take up the clarinet. ;D
What a sweet husband!
Hugs, Sharon
My husband became ill with chronic fatigue syndrome 20 years ago. I have to say that I didn't "get it" until my Sjogren's progressed to the point where I have the fatigue as well. However, I didn't have to "get it." I just had to accept that he was fatigued, and believe him when he said he couldn't do something, and find a way to work around it to do what I wanted, or graciously just not do whatever it was without blaming him either in my head or out loud.
Share butyoudontlooksick with him. That will help.
Sharon
Quote from: SjoDry on December 27, 2012, 05:20:37 AM
Hi ChrisB.
I was messing around trying to teach myself how to blog and also how to market my business with videos.
For the heck of it, I made a video about a day in my life with Sjogrens. I have been shocked at the number of folks
who have contacted me & told me that their spouse did not "get it" & my video helped them to explain SJS to their spouse. While I created it with
my wacky sense of humor, it is also very truthful without exaggeration.
Check it out: http://sjodry.wordpress.com/category/videos/ (A Day In The Life of SjoDry)
Good Luck. It may take a while, but he will get it.
SjoDry
This is a wonderful video! It should be a thread of its own, and mentioned in the Resources section as well.
Great job!
Sharon
Thanks Sharon & Keith.
It never occurred to me that a little video would help to illuminate our condition to others.
As they say, a picture is worth 1000 words. If it helps even one person to understand & be more supportive, I am very happy. :D
SjoDry
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?
Quote from: keithmarty on December 27, 2012, 08:18:01 AM
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!
It is fantastic!!
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
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
Quote from: prunella 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?
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
Quote from: stick gal 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
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.
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.
QuoteThe 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
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.
Quote from: Lesley_x 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.
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.
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.
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
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.
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.
Quote from: CMNK12 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
Yes and he feels that plaquenil slows down the progression but I can't find any data that supports this. Another reason I'm hesitant is I have vitiligo. I treat it with narrowband ultraviolet light. I'm worried about the plaquenil making me too sensitive to UVB. Although my derm says it should be okay but he's not sure. I'm so frustrated!
Research on Plaquinel for Sjogren's:
http://arthritis.webmd.com/hydroxychloroquine-sulfate-for-sjogrens-syndrome
http://www.medhelp.org/posts/Autoimmune-Disorders-/Fear-of-Plaquenil/show/1288659
http://www.mayoclinic.com/health/sjogrens-syndrome/DS00147/DSECTION=treatments-and-drugs
http://www.dry.org/fox20020816/guide.htm
In patients with more severe arthralgias or arthritis, stronger medications called ?disease modifying anti-rheumatic agents? (DMARDs) need to be used. Perhaps the oldest and safest is hydroxychloroquine (Plaquenil), which is used in a dose based on weight (up to 7 mg/day per 2.2 pounds of body weight). This drug has a slow onset and takes about 3 months to kick in. The drug labeling warns of build up in the retina. This warning derives from many years ago when the drug was used in high dose (often up to 15 mg per 2.2 pounds of body weight). When the correct dose is used, the risk of retinal damage is estimated to be about 1 in 10,000 (which was not significantly different than control groups). Nevertheless, for medical-legal purposes as well as for patient protection, we advocate that the patient get an eye check about 6 weeks after starting and then every 1-2 years. In this way, patients who do not tolerate the medication (usually GI upset or a rash) will not have the added expense of pre-therapy eye check and since the potential for eye buildup would require years, the patient is at no risk by waiting this short interval and may save money on one less doctor?s visit.
http://reasonablywell-julia.blogspot.com/2011/02/plaquenil-faq.html
There is a very low level of risk, and a lot of reports from patients about how much it helped. There isn't a lot of clinical research on it, though. There is one study starting now in Korea.
Sharon
Thanks so much for all your support. :) it's so awesome not to feel alone.
You guys are the best.
Sodry your video was perfect!
Christian,
You may still be able to enjoy cycling, just don't overdo it. I haven't cycled in about 12 months (maybe longer ::) ), but I've fished the bike out to go next week with friends for a try. This is purely a recreational ride and my friends know I may flake so the pace is gentle and apparently they have picked a relatively sheltered path. We will also be leaving early so the UV will not be at it worst.
I am photosensitive this is what I am going to try for the sun when I am riding - Long lycra leggings, singlet top under a long sleeved loose cotton shirt with collar, (you can also buy UV shirts that are designed to breathe and be cool to wear) I have sun gloves for my hands (They are actually very cool to wear - they are fly fishing gloves) , and a legionnaires cap with good peak and neck protection that fits over my bike helmet.) Oh and a ton of UV block. (A must here in Australia even if you are not on plaquenil)
I will probably look like a total dork, but if it works it will be worth it!
I'll let you know if it works or if I just pass out from heat exhaustion, due to covering up ;)
By the way my husband didn't get it either, but I think now he's starting to now that he can see how well I am when I look after myself and how utterly exhausted I am when I don't!
Good luck
Tracy
One day Husband went out and over did it playing golf...came home and could barely move.
Which I happened to notice as he was sitting on the side of the bed trying to lift his leg to get his shoes off.
"Hmm...guess you played the whole course? A bit stiff?"
"No ...I'm fine"
"Oh....Ok cause you LOOK GOOD!!!"
He looked up at that...and I said, now you know how I feel when "I" hear that...but you really do look good...kiss...kiss.
He said " Ill never say that to you again"
"Oh, no Honey, I know you only say 'I look good because it is true...to you" ;)
Quote from: quietdynamics on January 02, 2013, 09:24:26 PM
One day Husband went out and over did it playing golf...came home and could barely move.
Which I happened to notice as he was sitting on the side of the bed trying to lift his leg to get his shoes off.
"Hmm...guess you played the whole course? A bit stiff?"
"No ...I'm fine"
"Oh....Ok cause you LOOK GOOD!!!"
He looked up at that...and I said, now you know how I feel when "I" hear that...but you really do look good...kiss...kiss.
He said " Ill never say that to you again"
"Oh, no Honey, I know you only say 'I look good because it is true...to you" ;)
Awww...
Sharon
My entire family didn't get it because we don't always look like we feel. I found my husband got it as he saw what I could and couldn't do anymore. He watched me stop activities I loved to do. He watched me purge the house of collections of things because I could no longer dust as often. My kids didn't get it until I had a flare put me in a wheelchair for a few weeks. Have your husband read the Spoon Theory. Its wonderful. I save up my strength for some special shared activities with my husband but I encourage him to pursue things on his own too. We have been married 37 years and endured many trials but this is the hardest because its me the Type A do it all gal who cannot do it all anymore.
Sjodry:
Your video is brilliant! It should be required viewing by every doctor and rheumy who treats Sjs.
grammad97
I guess I am lucky. When I do not feel well, I get a funny gray pallor. So I do have "Shades of Gray". It was pointed out to me the first time I went to an ER and the Triage nurse asked if he could pray for me. I said why? He said " you are REALLY sick!!" This was pre Dx. So husband who is in the sciences knows what facial/ skin pallor means ( I am usually too ill to notice and practicing "mirror avoidance technique" and he will usually say something ... way before I do. For me it get old, so I don't say anything and just put a foot in front of the other or take a nap.
After a nap my color comes back (sometimes takes hours or days)....Wow...you look great, husband will say. I take it to heart because he is telling me the truth.
Knowing about the skin tone change is why when I go to the Dr...I never wear make-up. I do not want them to think "well, she looks OK" So after the appt I put some blush on in the restroom or car.
Skin when grayish is a sign of physical stress and or pain.
Chris, have you ever been tested for type one diabetes antibodies? The reason I ask is that goes hand in hand with many AI and other diseases vitiligo being one. It does not always mean you are diabetic or will become..but what it does show is the B cell attack on the pancreas. I believe it can mimic type 1, and also cause drying of the eyes and mouth. I am in the so called honeymoon phase before becoming insulin dependent, I still have some beta cell function but its slowly being destroyed.
This leads me to think many of my symptoms are actually diabetic in nature, my rheum is kinda thinking this also, she thinks the PN is most likely from a diabetic angle, and the SjS is not wholly responsible for the weakness muscle wasting tingling etc. My endo is taking a wait and see approach , he says if and when it happens then I will be on insulin. For now I record my readings and try to keep them under 140..at 140 irreversible damage is happening and it builds up over time. Just a thought but maybe talk to your doctor about the possibility of prediabetes and thyroid problems.
My husband didn't get it at all. I have tried an tried and now he somehow seems to get it. I hope... It hasn't been long still.
I think it's quite normal for the other party to be a bit thick headed on this - and we also need to give them some patience.
How long have you had the diagnose?
I got my diagnose this summer, but I had pretty much accepted the fact long before. So I was tuned in on it. My husband on the other hand refused to listen to anything about any ilness (after a couple of false suspicions before Sjogren's - you all know the path to diagnose).
So I somehow had half a year of acceptance ahead of him.
So the first half year he was an bum. I can somehow understand him - 5 years ago he married a young, healthy and active woman, and now he's stuck with this! Plus a 4-year old that he is currently taking care of almost alone plus that sick, crancky and frigid wife. That is a bummer!
I mean - this is not just a life changer for me, but also for him. So I have tried to be a bit more understanding. But also more demanding. He kept saying that he didn't understand all the words I said, and that he couldn't read it and... bullshit... He's an highly trained academic with a masters degree. Ofcourse he can read some links on the internet about Sjogren's.
So I made him do that, it's easier for him to understand, when it's not me telling him, but medicine stuff he can read.
And we have talked. A LOT! We have spent some quality time together, I have been quite specific about what kind of support I need from him, and he has been allowed to say out loud that he also thinks it sucks.
And I am also in the process of getting some couples councelling for us. I have been very close to packing up and leaving this last 6 months (good thing that I have been too tired to actually packing). That very loving, supporting, caring and giving spouse from the movies when you get sick - that is not a given.