Author Topic: Relationships and Ilnesses...  (Read 7809 times)

Bernice

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Re: Relationships and Ilnesses...
« Reply #15 on: September 21, 2009, 03:23:30 PM »
Look this guy I got, my husband of 27 or 28 years, I forget right now, brain fog day! BUT! most of the time (99%) I wouldn't trade him for NOTHING, BUT some days I would take a DIME!  ;);D Those days when he is invaluable are the days when he is so sweet and loving, days when he can't do enough for me. BUT! Those dime days are when he comes home "TIED!" Well on those dime days, it's best I feel my best cuz I'm sure gonna have to fend for myself or get somewhere and get it still.  >:( :'( Cuz he ain't movin without a frown and ADVICE, like, "Maybe if you just put it out of your mind you'd feel better" I hate frowns lookin at me and I hate INSANE MEDICAL ADVICE, especially when I'M hurtin and "TIED!

Bernice"




Gail

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Re: Relationships and Ilnesses...
« Reply #16 on: September 21, 2009, 06:39:59 PM »
Hey, everybody,
Thank you for sharing your stories and supporting me.
I do not have any diagnosis yet. I've been to numerous doctors  and still nothing.
So, I guess it is easy for somebody to think that the disease is all in my head. Sometimes I even believe that. But the reality says that it is not in my head. I got what I got, but it does not have a name fortunately or unfortunetely. I still will investigate what is wrong with me and do not care what anybody else says or thinks of me.

I just hope that the guy that does not believe me will be in my shoes one day and he will have somebody call him a "hypochondriac".

Gail.

decemberdeb

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Re: Relationships and Ilnesses...
« Reply #17 on: September 22, 2009, 07:00:10 AM »
my spouse broke my heart last night!  told me I just want people to feel sorry for me...wow!  so I guess I am in the same boat as some of you.

Chickpea

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Re: Relationships and Ilnesses...
« Reply #18 on: September 22, 2009, 08:17:01 AM »
Oh Deb, that must have hurt.  I'm sorry that he said something so cruel to you. 

To be honest, if you just wanted people to feel sorry for you, you could have chosen something much less complicated and easier to diagnose than Sjogrens.  And easier to pronounce! 

Thinking of you - Chickpea

Gail - you have such a great attitude.  It's really tough being in limboland without a diagnosis, even with the most supportive friends and family.  We've all been there, some for longer than others.  Things changed for me when I was able to get to the place you are:  'I got what I got' is such a great approach. 

Take care - Chickpea

roetta

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Re: Relationships and Ilnesses...
« Reply #19 on: September 22, 2009, 10:23:27 AM »
Oh Deb, I'm so sorry! That's rough. My teenage daughter once told me I was letting the disease control my life. And my husband has uttered many things he probably wished he could take back later. I often have to remind myself that they are trying to find ways to cope with the changes in their lives too. It's hard for them to understand something they can't see or feel. And I'm sure there are lots of times where they resent having to do more to help out.

SarahLindsay

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Re: Relationships and Ilnesses...
« Reply #20 on: September 22, 2009, 07:33:22 PM »
Gail, I'm so sorry for what you're going through, and I can definitely relate to some parts of your story. Though I know my bf is well-intentioned, and he really comes through for me sometimes, when it comes to the day-to-day stuff, he just doesn't get it. He'll try to comfort me by resorting to humor ("don't cry, you need to save those tears!"), or just brushing things off ("nah, you're fine, could be worse"). Sometimes it does help me put things in perspective, or forget my aches for a moment...but most of the time, it just feels like he's yet another person who doesn't understand. Like others have commented, I think it's good to remember that our loved ones may act this way because they're trying to come to terms with our illnesses too, and don't like seeing us feeling so poorly...but that doesn't make it any easier for us. That's why I'm so thankful we have this forum - a whole "world" of people who know exactly what we're going through! I don't know what I'd do without it. 

stillsguy

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Re: Relationships and Ilnesses...
« Reply #21 on: September 22, 2009, 08:39:48 PM »
hey deb

u need to find some real decent study results and quotes from decent researchers books which describe both the difficuly AI diseases r to nail down sometimes and also how patients may look normal, and i do not mean any pamphlet from the arthritis situation; the documents must b cogent, and with no b.s.ing about the potential problems.... let him read an 'objective' report or two and then keep a straight face....

wish u well

Bernice

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Re: Relationships and Ilnesses...
« Reply #22 on: September 22, 2009, 08:58:43 PM »
Stillguy,
That is a great idea, but where do you find them? Most of them (pamphlets) merely skim the surface. There are some good books out there, but most people are not going to take the time to sit and read a long drawn out book! Shoot I don't even want to and I love to read, but don't want to be too bothered with these books. I have some, but have only glance through them from time to time.

Are there any suggestions for thorough pamphlet size materials?

Take Care!
Bernice

KYMOM

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Re: Relationships and Ilnesses...
« Reply #23 on: September 23, 2009, 07:42:41 PM »
We take the good with the not so good.  My husband will massage my hands and feet any night I need this.  But he also wants to cure me with just about every new supplement or quick fix he can find.  Told me several weeks ago that maybe I didn't have Sjogren's but Mercury poisoning.  I just roll my eyes and try and see that he is only trying to help.  (I HATE fish).

Roxanne

BOWERSKB

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Re: Relationships and Ilnesses...
« Reply #24 on: September 23, 2009, 08:03:15 PM »
My husband has major back issues so my problems and pain aren't anything like his.   :-\  He often says, so what is wrong with you (talking about my illness)???  Like it's not a big deal at all.  But honestly I have been blessed with not too many issues at the moment and I just deal with it each day and keep my mouth shut.  I feel better when I am eating healthy and exercising but that hasn't been a priority lately due to time on my part so I've been feeling worse than normal with the joint pain and numbness in my arms/hands.  For the most part, he is a good and loving husband but I completely understand your issues.  I have always had an issue with vaginal dryness so to make things short, my husband has been awesome at understanding those struggles especially when we were first starting out and becoming newlyweds.  Imagine dealing with that and then 10 years later finding out what the cause actually is after the entire city has seen your stuff and treated you with every kind of cream/meds that they can give you for that. lol 

Just believe in yourself and know that if they aren't stepping up to the plate now then they aren't good enough for you ever!  You shouldn't have to make someone else love and support you, it comes natural with the right person, even through the rough patches.

Bernice

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Re: Relationships and Ilnesses...
« Reply #25 on: September 23, 2009, 08:24:36 PM »
Bower,
Welcome!

LOL!L LOL! You cracked me up!!!!! ;D ;D ;D ;D

Girl didn't ya know, a glob of good ole Vaseline would've done the trick for ya???? ;D ;D ;D ;D ;D ;D ;D ;D LOL!

Bernice


stillsguy

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Re: Relationships and Ilnesses...
« Reply #26 on: September 23, 2009, 08:50:31 PM »
bernice

the pamphlets r sorta the Coles Notes... no the Medicine for Dummies pages, what sorta serious medical document could they represent? The idea is to present, in a bone fide format, exactly what the studies, the researchers, the thinkers have discovered, and r publishing their findings on. Its the creme de la creme of thinking in these matters... so one's significant other, in my opinion, had better start reading or shut h3ll up about something they know nothing about and r unwilling to try to understand something about one's maladies...,.

if someone's spouse or significant other has difficulty with comprehending that their loved one is in trouble, then present them with the reason why they r having these difficulties. Here is the information, start reading! (And read something of quality....) If they cannot understand these papers, then it should b pointed out to them, "If u can't understand what the best minds have to say about my predicament, who r u then to say anything negative about me while I suffer?" or more plainly, "Stuff it, bub!"

The issue with the pamphlets lies in their superficiality, their clumsy jargon, their even clumsier attempt to make everything 'be all right', their brevity. Y shouldn't everyone learn a tuff term or two, b a little confused, maybe think about things just recently read...? A little knowledge will set u free....

Bernicde, I used to prowl the hospital's and university's library's for years. Fotocopied mountains of studies of books... I was such a frequent visitor in one hospital's library, one time I was asked by a resident as we left together a question concerning the use of a drip or bolus method to fight a certain bacterial infection. "Hmn," I pondered as I scratched my non-existent goatee. "Bolus," I answered. She smiled happily, it was her decision too apparently. (I only hoped her question was rhetorical and some poor snook wasn't waiting somewhere for my opinion on his treatment...)

Nowadays, u can, by virtue of obstinance and googling, obtain some pretty savvy studies and the likes on line, just have to ask the right questions, and know when ur wasting ur time...

"just have to ask the right questions, and know when ur wasting ur time...." hey, just like the topic at hand... how to pick a mate hehe

Bernice

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Re: Relationships and Ilnesses...
« Reply #27 on: September 23, 2009, 09:41:57 PM »
Still,
I agree most are just repeating the same humdrum basic things! I would love to find one that went more into detail in a short amount of space! We had a thread about SJS awareness, well I have given this alot of thought since and have wanted to do my small part by at least making the people in my small circle aware, but I know I can not just present them with a book! If I wanted to take a small portion of time in an health awareness seminar at my church, I can't give them a book to read as we discuss SJS in a short amount of time!

Let's say there was at least one that actually falls in my category, they have SJS, BUT don't have much of the dryness?? They would leave still without a clue because all pamphlet mostly focus on dry eyes and dry mouth and not enough of the many other common symptoms, that can easily be associated with a great number of other things.

I do search the Internet for good short pamphlets, but come up with the same. Everybody seems to wants to write a book!!

Still, I recall when you first introduced yourself I suggested that you possibly write a medical journal, well maybe we don't need a journal after all, but just a short well informed pamphlet. Will you at least consider this????

Bernice

Chickpea

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Re: Relationships and Ilnesses...
« Reply #28 on: September 24, 2009, 06:33:11 AM »
Sorry Bernice but 'a gob of good ole Vaseline' would NOT do the trick.  Lots of people react badly to petroleum jelly, especially on delicate skin.  And what could be more delicate or in need of extra special care than your vagina?

Hi Bowerskb - good to meet you!  LOL @ the image that 'the entire city has seen your stuff'.  I hope you find the information and support you need here at SjS World.  It sounds as though you have a great attitude already and I know you'll fit right in with your new Sjoggie family.

Take care - Chickpea

BOWERSKB

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Re: Relationships and Ilnesses...
« Reply #29 on: September 24, 2009, 06:33:24 AM »
Bernice - You are crazy!!!  lol  Sorry to say that vaseline didn't work either for me.  Not enough to have dryness but to be highly sensitive to approx 95% of the other products available as well.  What a mood killer when you get ready to apply the product and then have to go sit in a cold bathtub to put the fire out.  We have our ups and downs but to have a man that is that patient with that is beyond words...lol  That was a long 4-5 yrs!!!  

Since we are on a girly subject - I have also had 5 miscarriages in between my two beautiful babies and I now think that it had something to do with SJS.  My daughter was born with a slight heart issue which is very common in SJS patients.  7 years later, my health history is all starting to make sense and all of the blanks are starting to be filled in.  Not exactly the news that I want to hear but at least I have an answer to all the crazy issues that I have had this entire time.  I actually stumbled across this illness by mistake and a good doctor that did the right labwork.  

I'm really glad that I stumbled across this website!  Thanks for being additional support for me!

Kathi