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mammakc
Posted Friday, October 30, 2009 3:47 PM


 

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MAYBE ITS JUST MY MOOD LATELY BECAUSE OF THE BAD FLARE UP THAT NEVER SEEMS TO END. BUT I HAVE BEEN SUPER EMOTIONAL AND NOT ABLE TO REALLY PUT ON A FRONT LIKE USUAL. WHICH INTURN HAS MY FAMILY AND FRIENDS DOING WEIRD THINGS BUT BECAUSE OF THE THINGS THEY HAVE BEEN DOING I NOW REALIZE THEY NEVER REALLY UNDERSTOOD OR GOT IT OR CARED TO DO NEITHER AND THE ACTUAL REALIZATION OF THIS HAS REALLY IMPACTED ME. THIS IS ONE OF THE REASONS I SEARCHED OUT THIS SITE.





I HAVE BEEN "SICK" FOR A LONG TIME BUT DID REALLY WELL AT GETTIN BY AND THE FLARE UPS ONLY LASTED MINIMAL TIME BUT THIS LAST YR I HAVE NOT BEEN SO LUCKY. AND I DO BELIEVE OR SURE WANT TO HOLD ON TO HOPE THAT EVENTUALLY I WILL GET ANOTHER MEDICATION SETUP THAT WORKS AND GETS IT UNDER CONTROL. WE (ME AND THE DRS) ARE TRYING.



YESTERDAY A FRIEND I HAVE KNOWN ABOUT 13YRS, DROPPED BY. THE FIRST THING OUT OF HER MOUTH IS "I WANTED TO TALK TO YOU ABOUT SOMETHING I SAW ONLINE TODAY". I WAS LIKE OK AND SHE SAYS "KC HAVE YOU EVER HEARD OF JOINT REPLACMENT?" NOW AFTER I REGAINED MY COMPOSURE I EXPLAINED TO HER THAT YES I HAVE AND AT THIS PARTICULAR TIME ITS NOT AN OPTION AS IT HAS BEEN IN THE PAST BUT I DIDNT WANT TO GO FURTHER .I MADE EXCUSES OF NEEDING TO GET SOMETHING DONE AND SHE LEFT. SO WAS I JUST TO SENSITIVE OR ARE PEOPLE WHO ARENT SICK P REALLY THAT UNAWARE? SHOULD I HAVE THANKED HER FOR THE EFFORT TO COME UP WITH A SOLUTION? AS USUAL I ALWAYS 2ND GUESS MYSELF.





AND I HESITATED TO EVEN POST ANYTHING BECAUSE SO MANY OTHERS HERE HAVE SUCH HEARTACHE AND TRIALS GOING ON BUT I THEN THOUGHT, WAIT THE REASON I SEARCHED OUT THIS GROUP IS BECAUSE I HAVE BEEN FEELING DESPERATE AND HOPELESS SO DO WHAT I CAME TO DO HERE, AND TALK TO THEM



EVEN MY FAMILY CALLS WITH ...HAVE YOU TRIED THIS MED, ARE YOU TAKING YOUR MEDS ,ARE YOU SURE YOU ARE TAKING THEM RIGHT, DID YOU THIS , DID YOU NOT DO THIS? THEN WHY ARE YOU HAVING TO USE A CANE? WHY ARE YOU HYBERNATING IN YOUR ROOM, WHY ARE THE DISHES STACKED UP, MOM YOU HAVE MISSED 3 PTA MEETINGS WHATS WRONG WITH YOU, MOM WHATS WRONG WITH YOUR HAIR? KC WHY HAVENT YOU BEEN TO CHURCH ARE YALL ALRIGHT? WHEN WE WENT TO A DINNER FOR MY FATHER IN LAW I WAS LIMPING USING A CANE--KC WHAT HAPPENED TO YOU, THESE PEOPLE HAVE KNOWN ME FOR 15YRS DID THEY HAVE ABNESIA ABOUT MY RA,........ IT GOES ON AND ON





IM WONDERING DID I MASK SO WELL AND NEVER ASK FOR HELP AND NOW THATS WHY NO BODY WANTS TO HELP OR CAN GET A CLUE OR THEY JUST DONT CARE ? HAVE I BEEN THE ONE IN THE CLOUDS AND JUST DIDNT REALIZE WHEN MY FAMILY STOPPED CARING?



ONE DAY MY 21 YROLD DAUGHTER , WHO HAS MOVED BACK AFTER COLLEGE UINTIL SHE FINDS A PLACE , CAME IN THE ROOM ONE MORNING BEFORE SHE LEFT WORK TO TELL ME SOMETHING AND I WAS CRYING, IT HURT SO BAD TO DRESS, SHE CONTINUED TO TELL ME WHAT SHE NEEDED TO TELL ME AND TURNED AROUND AND LEFT! NEVER SAID ARE YOU OK SQUAT. NOW I WNT TO THINK SHE WAS FREAKED OUT BY ME CRYING BUT SERIOSLY? HAVE I CREATED UNFEELING BEASTS?????



OK THIS WAS MOSTLY A RANT , I GUESS TO RELIEVE MY SHOULDERS. NO ONE NEEDS TO FEEL COMPELLED TO COMMENT! MAYBE JUST GETTIN IT OUT THERE WILL HELP



THIS SITE IS TREMENDOUS!




*STOP THE WORLD NOW, IM READY TO GET OFF!*
Post #4251773
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Polly Sue
Posted Friday, October 30, 2009 3:56 PM


 

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ITS THE ONE REASON WE ARE HERE! VENT AWAY! I AM SURE THAT THEY DON'T MEAN TO BE CRUEL, PERHAPS THEY JUST DON'T KNOW WHAT TO DO OR SAY!

LOOK AT THE SPOONS POST, MAYBE THAT WILL HELP.

HAVE A RESTFUL WEEKEND & I HOPE YOU COME BACK STRONG ON MONDAY!

GO STEELERS!

SUSAN (POLLYSUE)
Post #4251777
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Gramma
Posted Friday, October 30, 2009 5:12 PM


 

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Oh dear Mamma! I feel your pain.

If after 21 years your family is still clueless, then you have been doing a superhuman job of hiding your pain. You can't keep that up! It's too destructive for your own health. You need to reach out to the whole clan and tell them that after all this time you are not doing so well, and could use all the help you can get. Explain to them that RA is INCURABLE, in case they haven't got the idea yet, and that flares come and go, and here lately you are in a BIG one! Explain that this is not arthritis, but an auto-immune disease where your body is attacking the lining of your joints, and when the lining is gone, it's gone for good. Then the cartilage wears away. You use a cane because your hips and ankles have no cartilage left and you can't get around without it.

Tell them that you and your rheumatologist are working together to get you feeling more like yourself, but it will take time.

Then take a day off! Be lazy, stay in bed and drink coffee (or Merlot) and watch old movies. Tell the family that you need the day to yourself and they will have to manage without you. If they ask why, tell them Gramma Ellie said so!

You'll be in my thoughts and prayers.

Hugs,
Gramma Ellie
Post #4251802
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MaryFran
Posted Friday, October 30, 2009 6:27 PM


 

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Mamma - I'd like to take a baseball bat to them! Like Gramma said, you must have been doing a superior job of hiding your suffering all these years. Well, it's time to get up on the stage and shout out what's going on for you. Polly Sue suggested the Spoon Theory and I totally agree. Print it out and make enough copies for every family member and friend and give them each one with a request that they each go to a quiet place and read it three times. I also want you to do the same with the "Letter to people without chronic pain" which is posted at the top of our forum posts. It is marvelous and explains what I went through last year in my opening flare with RA. Wish I had known it then! I hope and pray they will get it after studying those. Keep posting here - it's a great group!

Mary H.



Plaquenil, Medrol, soon to be Orencia, Folic Acid, Vit. D, B12, Calcium, + others unrelated to RA
Post #4251829
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Grandpavan
Posted Friday, October 30, 2009 7:23 PM


 

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I think most people know of "arthritis" as an old person's disease that comes from wear and tear, and everyone has it if they live long enough. Osteoarthritis is so common that everyone is at least vaguely familiar with it. When I was first diagnosed I was told I had inflammatory arthritis and it was an autoimmune disease. Hearing "autoimmune" I thought that must be like AIDS but I've done nothing that might be a cause of AIDS. This is an indication of how little people know about RA and how way out their ideas can be. I think it would be a lot better if it were called "inflammatory joint disease" to get away from both Arthritis and Autoimmune. Anyway your friends and relatives are probably trying to be helpful and they just don't realize how clueless they really are.

It is frustrating to explain the same thing over and over, but please try to react to their intent rather than to their insensitivity. God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
Post #4251856
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Jay in Sarasota
Posted Friday, October 30, 2009 7:25 PM


 

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Have you tried gin raisins? It worked great for me. JUST KIDDING!!!! We all know where you're coming from and are happy to be here for you to lay it out. You're not alone and I'm putting two links below about the insensitive comments we've suffered. I hope it helps to hear other peoples stories. The first link was a year ago and one more recently but you'll at least know you're not alone. Wow the thread from a year ago seems to have been the first opportunity to tell these stories and the response was rather amazing. Let's hope for some better days. I mentioned something about giving spoons to a woman tonight who was going to have to work until after midnight and after I couldn't quickly explain the spoon theory I said I'd print it out and she said she couldn't wait. There's hope out there but we have to go through a lot.
Jay

http://community.arthritis.org/forums/Topic4170971-1831-1.aspx

http://community.arthritis.org/forums/Topic4243066-1831-1.aspx
Post #4251858
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Staylor875
Posted Friday, October 30, 2009 7:32 PM


 

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Insensitive is when your mother asks you what is wrong with you (in her normal nasty tone) and you tell her you are in a lot of pain from the RA and she always tells you the same thing. "I thought they gave you medicine for that sh_t". I have tried to explain to her that there is no cure and just because they have given me medicine I will still have pain and flares but it goes in one ear and out the other. Now that is insensitive.

Sandy
Post #4251860
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Tommy4
Posted Friday, October 30, 2009 8:44 PM


 

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Vent away after 17 years I still get questions from certain family members and friends they think RA is osteoarthritis and you only have it in one finger and only hurts once a month and everyone always knows something that will help they always mean well but I know what you are saying want to scream.

Tommy
Post #4251886
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Bekah M
Posted Friday, October 30, 2009 8:47 PM


 

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KC I wish I knew how to fix that for you, because I would! That sounds terrible to put up with all this time. I am fortunate that my husband see's my pain and is empathic to it. My mom has a similar set of diseases and my dad knows from years of dealing with my mom how it affects someone. My best friend understands my pain quite well. I have been extremely fortunate family wise. However, people I used to work with or some of the folks at church who are all well meaning, still don't understand that this does not go away. It's so frustrating when someone see's you without the cane they think you're healed up. They don't understand that we flare or have good and bad days, but it never goes away.!

You are more than entitled to complain and rant because it does make you feel so much better to know so many people understand you now..We know what you live through. If I can make a suggestion? I wrote my own letter to my family at the first part of diagnosis and after educating myself online about the autoimmune diseases. I felt more compelled to have things in my own words and it helped me a lot. I emailed aunts, uncles, parents, etc...I got really sweet replies from everyone and many condolences on my illness, but also a lot of great prayers and love came from it. If you are so inclined, try writing to them yourself and make it something that is very personal. It's just a suggestion. Not everyone likes to write...But one thing that should be totally emphasized is if the shoe were on the other foot in your immediate family, you would be among the first to try to understand and help out. My family knows me and knows that is how I am...So that was a good way to make them see that they were not being as helpful as I may have needed because of being on a walker with no one to do housework for me ....All of us know that frustration at one point or another with RA..Its not always cooperative with a dirty house and dirty laundry! Just a little help is so appreciated.

Sometimes I can do it all in a few days of breaking it down into increments of work....Other times I am flaring so much I have to ask my friend Kay to help or my granddaughter Jess to help out. I hate to ask them, but they are always ready to help me...

I will say a prayer that your family comes to see that you need them now more than ever! God bless you Sweet KC!.


Plaquenil 600mg., Metoprolol 200mg.,, Hydrocodone 10/500, Elavil 100mg, Lisinopril 20mg,Ativan, Omega Complex, Milk Thistle
Primary Lupus and SecondaryRA, Fibromyalgia/CFS, Raynauds, Sjogrens...
Post #4251887
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Grandpavan
Posted Friday, October 30, 2009 9:43 PM


 

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Jay in Sarasota (10/30/2009)
Have you tried gin raisins? It worked great for me. JUST KIDDING!!!!

Maybe it'll work if you eat enough raisins and drink enough gin to be feeling no pain. (I also don't recommend it.) God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.
Post #4251906
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Barbara Schwefel
Posted Friday, October 30, 2009 9:44 PM


 

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KC,
Great rant good for you!!!you definately need to do this more.As Bekah said I have a pretty knowledgable family as my mom and aunt had RA.My dad for 81 gets it as much as he can God bless him.As far as my husband he is my rock as well as the love of my life.He goes to every rheumy visit with me and we laugh on the way home on the good appts. and cry together on the not so good.As far as everyone else whether they get it or not doesn't matter.Usually I try to let the stupid comments go through one ear and out the other.I'll explain it a couple of times and if they don't get it oh well...You know you always have us through the good the bad and the ugly and we do not judge here because we've all been through the same thing.It's good that you got all that off your chest.I admire you for it!!!!!!

A SMILE IS THE LIGHT IN THE WINDOW OF YOUR FACE...IT LETS PEOPLE KNOW YOU'RE HOME.

Author unknown



Diagnosed 08/09 Am currently on Methotrexate,Folic Acid,Nebumetone,And Hydrocodone for pain.
Post #4251907
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Bodak
Posted Saturday, October 31, 2009 1:00 AM


 

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I know how you are feeling.
For me at times I find it easier to just hide away rather than have to try and explain it all again.
To be fair tho, no one knows unless they have experienced this disease or some other life altering situation.

I find with my mate that I just have to end up being a little rude.
"I said NO Tom" for which he gets upset because he just cannot understand...

For those that have not had a read then take a look at something I wrote regarding this disease and that word Arthritis.
Read

----------------------------------------
Peace be with you always.
Stephen

Severe RA since October 06
Web Site - Photography
Post #4252029
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Pam 14
Posted Saturday, October 31, 2009 1:27 AM


 

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KC - This is the one place you should never feel uncomfortable - or that you can't rant or pour out your heart. That's why we're all here for one another. Because we do understand and many of us have experienced the same things and same reactions. It does sound like you've really protected your family for years from the pain you carry within you. Sounds like it's time to sit down and have a good talk. You know, they can't begin to understand if we don't tell them what it's like to live inside our bodies. And they can't help us if we don't tell them what we need. I have found for years that a lot of people - in particular those who care about me the most - are always looking for a way to "fix" me. They want to make sure I've read the latest article or tried the newest herb or whatever they've either read or seen on tv. I've had to learn to know it's just their way of trying to care. It's all in how I accept it or react to it. But - there are days, when the flare is bad and the pain is harder to conceal - and then it's harder to handle.

Just know that because of this wonderful forum you no longer need to hide your pain - not from us anyway. I was having a hard time falling asleep tonight, KC, so I got on-line to catch up. I'm so glad I did. I hope you can get some needed rest from the pain you carry within you - and that you know we'll be praying for you to have a better day tomorrow. Pam
Post #4252033
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SassySyl
Posted Saturday, October 31, 2009 11:57 AM


 

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KC,
I know how bad it can be with family members, and I've been dealing with these diseases since I was a baby. Its never easy.

I believe they love us so much that its so hard for them to wrap their brain around the concept that the one person they love and count on, is flawed...sick to the point that she may not be able to share the great moments in their lives. They are scared just as much as we are. And this leads to not knowing what to say and do. Some even have shown their frustration towards me by yelling in my face to "snap out of it." I have learned to do what I know I can, and let those people deal with their own lives. It isn't easy but it must be done at times. We aren't to blame. We can't control these diseases nor did we pick them. They picked us and so the battle was taken up, and we have been fighting ever since.

You are so good at venting. Keep up the good work! I know it helps me to vent and cry or even scream. If I didn't, I'd of gone bonkers a long time ago.
Hang in there and keeping posting. You will see that you will be feeling better each time you do.

Warm Thoughts,
Sylv

JRA, OA, PA, and Fibromyalgia

Medication Mix:
Humira 80mg; MTX 30mg; Prednisone 2.5 to 5 mg; Xanax 1 mg; Tylenol extra strength (when needed on very bad days); Darvocet 100mg


A smile is worth a thousand words and a kind word is worth more than a thousand smiles
Post #4252178
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doxie lover
Posted Saturday, October 31, 2009 8:01 PM


 

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KC, most people do not have a clue about the difference between RA and osteoarthritis . As others have said people think of arthritis as what happens to your joints as you get older. They know nothing of it as an autoimmune disease and think taking some Advil or Tylenol for arthritis will fix it. So rant away, people will people and sometimes they say ALL the wrong things.

Listen to Gramma Ellie's advice, You go Girl! That is the best advice I have heard in a long time. In fact I took 2 days off this week just to rest my aching joints. I did not drink coffee all day but did make a couple of runs to Starbucks for their Chai Lattes! Julie
Post #4252419
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mammakc
Posted Monday, November 02, 2009 12:25 PM


 

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I THINK THIS GROUP MIGHT BE MY BEST IDEA YET! SERIOUSLY GUYS , YOU CANT EVEN KNOW WHAT A HELP YALL HAVE BEEN! I HAD FOR THE FIRST TIME IN MY LIFE FELT SO HOPELESS UNTIL I REACHED OUT HERE. THANK YOU! SINCERELY THANK YOU SO MUCH.

I AM A LITTLE EMBARRASSED THAT I DID SHARE SO MUCH BUT I AM SO GRATEFUL FOR THE OUTPOOR OF SUPPORT BY ALL OF YOU. I INTEND TO READ IT SEVERAL TIMES AND TAKE EVERYONES SUGGESTIONS IN AND THINK ABOUT THEM.




*STOP THE WORLD NOW, IM READY TO GET OFF!*
Post #4253702
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Barbara Schwefel
Posted Monday, November 02, 2009 2:30 PM


 

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KC please don't ever be embarassed by what you posted we all understand.I for one am glad you did.I've learned here that venting is as important as taking your meds.It makes you feel good and that my friend is the point to all this.Have a great day!!!
A smile is the light in the window of your face that lets people know you're home.

A SMILE IS THE LIGHT IN THE WINDOW OF YOUR FACE...IT LETS PEOPLE KNOW YOU'RE HOME.

Author unknown



Diagnosed 08/09 Am currently on Methotrexate,Folic Acid,Nebumetone,And Hydrocodone for pain.
Post #4253820
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