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How long before you excepted your sick?

Jan 20, 2016 8:19 AM

Hello everyone, I'm wondering how long it told you all to except that you're sick and life is just going to be different now. I was diagnosed with RA just over 3 yrs ago , and since then it seems as though its been a whirlwind of medical problems....JUST LIKE I HAD A SWITCH FLIPPED! I went from a tough 90 MPH gal who was never sicknever stopped, to a SLUG! Since I have multiple diagnosis's. Fibro, sjΓΆgrens, small fiber neuropathy, cervical spinal stenosis, bulging disks in neck, osteoarthritis, just to name a few!!! I have fought it tooth and nail every step of the way. Ive been angry, denied, cried, you name it! I woke up this morning feeling different. Finally, i think i might be able to move forward, gently of course....for some reason, since my appts yesterday, I feel a bit like I can except my "new life" as it is now.....for the moment at least, lol. I honestly feel maybe it's because I had to get straight with my neurologist who has treated me like an idiot. Before I saw him, I talked with the nurse of how awful he was to me when n I was there before. Another nurse came to me and said she was going to make a note of it....He was actually better about explaining things to me this time! He started out with his cocky attitude and my mother, who is 76, leaned towards him and told him.....in a sturn but collect voice, that I'm needing to understand how and why I have all this horrible nerve pain everywhere and that he needs to see the video of my trying to pull out of a paralyzed state that lasted for almost two hours!! I have those spells on the avg if one to two a month!!! It scares the crap out if me! So, he started listening to me after he saw the video. Now, he's changing meds, and ordered new tests. He explained my small fiber neuropathy a "little" better and said most of what I'm dealing with stems from my RA. Anyhow, I saw my family physician next and he talked to me for at least half an hour too. They are thinking of sending me to Barns Institute in St.Louis for a more in depth look at my neuro issues if this new med doesn't help.

Jan 20, 2016 9:40 AM

Pretty quick for me. Psoriactic arthritis bad. Had it my whole life with swollen joints n other symptoms so we n I knew something was just not sure what. So when finally diagnosed in 2010 after knee scoping it was relief to know it had a name n a reason. Then reality really hit when I had double hip surgery. That's how bad it had gotten. 6 months later had a knee done. Now I do things differently, people r even nicer when they see me n ask if I need help. One day step at a time my dear. I do things on days when I can, then the others I rest more.

Jan 20, 2016 9:41 AM

Found out my stuff at mayo clinic so go where u think will be beneficial to u.

Jan 20, 2016 8:50 PM

Sleepingbeauty, like you I went from a very active, feast paced working girl to a screeching halt in 2010, when I had a mass in my pelvis removed. It turned into 5 in 1 surgeries, and new problems and dx have continued to jump on board my runaway health train. I fought it mentally and tried to fight physically until 2014. My doctors finally confirmed what I was afraid to admit, that I'll never return to work. Last year I was dx with Sjogrens, hypothyroidism, tremors, osteopenia, and dementia, among other things. And it just keeps coming. But this isn't about me. I want you to know I understand, and yes I went through all those grieving emotions, and still do from time to time. But having this community of support helps a lot.

Go to the barns institute, or Mayo or wherever, if it will give you answers and possible help. Just knowing may give you peace. You'll be in my thoughts and prayers! Hugs!! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 20, 2016 10:04 PM

Same here I'm starting to get a handle on it.

Jan 20, 2016 11:26 PM

3xsthefun, it sounds like you really got slammed with some really major surgeries! Bless your heart! I hate that for you. I'm happy to know that you're getting some much needed compassion and respect for what you've been through. It's really sad to know that many times, we feel that we have to prove our illness's? It's messed up. I resent that about invisable illness. Until our peers see outer physical damage, they think we're just out for attention.
And Flappyslady, I need yours as well as anyone else's story. Sharing is caring! And I may have to use your "runaway health train" term the next time I go to the Dr., lol. That really puts what happens with so many of us, it seems.

Jan 21, 2016 6:06 AM

Hi sleepingbeautu, so pleased that although life has dealt you a doozy you are managing to accept some of the new life given to you . I wish I was as strong. I was training to be a nurse and working as a carer in anursung home when I first got poorly this was 1997. After the usual sack loads of tests scan etc etc I was diagnosed with m.e, fibromyalgia, hypothyroidism, hypertension, diabetes and osteoarthritis in my knees. I went from active to like yourself slug mode but always managed to keep happy and fairly positive. In 2000 I was diagnosed with schuerrmans disease of the thoracic spine, again coped with that and was actually glad to have a name for this thin that had given me pain since I was 12. In the next few years that followed I've been diagnosed with anti phospholipid syndrome, arthritis in my spine, shoulders, neck , then degenerative disc disease of the lumber spine , two bulging discs one at t9 and one at l3 , last year I've was diagnosed with Sacroilitis and rotator cuff tears. Up until last year I coped even though life had changed. Its these last two years that has taken my mobility and left me battling pain that's a 8-10 most days. I have now turned into a woman that needs help for everyday tasks . I'm sorry to say I haven't managed to accept the new stuff yet, I get annoyed that I can't do the things I want, the little things like wash my own hair or go out for a walk when I choose. I hate living my life to some in else's routine, but I'm grateful for any help I get too. I wish I could accept this life which has left me childless ,dependant on others, career less and financially in poop. I was always a fighter in life for most things wouldn't give up or give in but at present I seem to be losing. I've had docs tell me the usual'its in your head or your depessed' ....lol no sh*t Einstein. Been made to feel like a druggie when pain meds haven't worked and been told nothing else to be done so gottra live with it now on. Still hoping for the happier life once I guess the grieving for a life I'd hoped for is over. You have given me faith that that move is possible one day. Sending gentle hugs and hoping for less painful days to you all. Xxxxx 🌹

Jan 21, 2016 6:42 AM

Cnan, thank you for talking to me. You have had a rough life for a very long time. YOU are an inspiration to ME! God bless you friend. I try to keep all of our shared friends here in my prayers. Sometimes my prayers are more specific when I am touched by a life story such as yours.
I am going to say a specific prayer for you to have peace with what life has dealt you. God must know how incredibly strong you are. My brother (who is also a very sick man) refers to those days where we feel down, frustrated or defeated, as the "Mully-grubs", lol. I like that term because it makes me kind of chuckle at such a silly name for being down in the dumps.
Try to focus on the knowledge that you aren't alone and that someone, somewhere is praying for you.
As for me, I'm sure I'll still have lot's of Mully-Grub moments too. But I feel I'm finally realizing that I don't have to prove anything to anyone anymore. Not even my doctors. If I don't get answers or feel they are working just as hard as I am to help me understand what and why my body is doing what it is, I will find one that does.
I think I have been letting these disease issues own me for too long. It's time I own the diseases!! I want to call the shots!
Don't know if I'm making any sense or not.
Love and prayers xoxo~

Jan 21, 2016 6:57 AM

Aww sleeping beauty I'm no inspiration hun, you are. Thankyou for such a lovely message back and it is very kind of you to say a prayer for me. I love mully-grubs such a fab name for those times I agree you can't say it without a smile appearing across your face So thankyou for the smile I'm now sat with 😁 . You go ahead and own those diseases lovey, it sounds like they already have a battle with you and your kicking their butts which is fantastic news as it sounds like you sure deserve to , your such a kind person as to offer a prayer to a stranger.and it is greatly appreciated I will hold you too in my thoughts for continued butt kicking mode to far outweigh the mully-grubs moments. Hopefully one day soon I will also call the shots on my own health issues just like you.
Your amazing lovey never forget that. πŸ˜˜πŸ’ wishing you many happy, less painful days ahead. Gentle hugs xx

Jan 21, 2016 12:03 PM

Lol Sleepingbeauty! I'm having a Mully-grub day! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 21, 2016 9:55 PM

I was shocked at first, but then it made my whole life of pain and stickiness make sense...missing at least 20 days per semester from a cold or flu that became an even worse sinus infection, awful periods that could knock me out for days, teeth all behind schedule so I'm still teething (premolars) at 15.

Jan 21, 2016 10:08 PM

Awww....cnan, You are so kind. πŸ˜™

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