My Husband Doesn't Get It

[Chrisb]

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!

[slccom]

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

[Chrisb]

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!

[tracyj]

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

[quietdynamics]

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"   

[slccom]

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

[grammad97]

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.

[sjenny]

Sjodry:

Your video is brilliant!  It should be required viewing by every doctor and rheumy who treats Sjs.

[quietdynamics]

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.

[Tivia]

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.

[Myshkin]

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.