I'm out of patience, persistence and acceptance!

[Carolina]

Dearest Sjogren's Angels,

Is anyone else tired of knowing about so many medical conditions, medications, and ways to cope with our conditions?

I'm already tired of it all.  And new things still pop up (and fortunately one scary thing has exited 'stage left' at least for now) even after all these years.

That tells me that I think I've already had my share, thank you!   So why is something new showing up?

That's because, of course, my Immune System is has been and always WILL BE disordered.  The major part of the disorder results in senseless attacks on my organs/systems.  Why do I think it will end?

1) I've run out of patience with the disabilities.

2) I've run out of patience with the medications and 'treatments'. The nasal sprays, the eye mist, the creams and lotions, the IVIG every four weeks, now watching what I eat because I have IBS (yes that's new).

3) I've run out of patience with 'breaking in' new doctors.

4) I've run out of patience with BOTH Sympathy and lack of sympathy from family and friends.   Yes even 'sympathy'  bothers me = ('how ARE you?'  'Here let me take your arm" (this from a 120 lb. person who will go down with me if I fall, and they'll be lucky if I don't fall on them, crushing them.")  HINT:  let the disabled person hold on TO YOU. 

5) I've run out of patience with pain of all kinds, with anxiety (new for me!), with waking up at 4 am, with my inability to really meditate or achieve any kind of acceptance.

Somewhere inside I know I'm still basically an optimist. 

I'm running out of patience waiting for my patience to return.

It will won't it?

Hugs,  Elaine

[Scottietottie]

Hi 

I hear you. I understand the running out of patience. We dont have a hec of a lot of choice though do we? Somehow going on is the only choice there is.

(((((Elaine)))))

Scottie

[SjoGirl]

Oh been there and more than once. Even during some of my best times I sometimes pull out my pill box and say to my husband, how did I become this person who needs this box to survive? That box doesn't include the eye drops and salves or the sun lotion or the special cream for the pupura on my arms that break out on occasion (usually when I have to present in public, I look like a leper or person with cancer).

I posted that my PCP now has an AI, I wan't very sympathetic as she told me about her three year journey to a diagnosis. I listened and just say uh uh over and over as she complained about docs not listening, docs saying she wasn't exercising enough or properly or people made fun of her pain (yep, even made fun of a doc in a doctor's office). I reminded her that it took me much longer to be diagnosed (thanks to her persistence in sending me to multiple docs) and nine years to get on the right meds.

Hang in there, the tided goes out but does come back in.

[Joe S.]

I understand the "What's next" thought. A change in insurance provider at 64 necessitates a change in heath care provider. A trip to get a mandatory photo ID left me with a PTSD flare of pain. A sliver of green butter a 1/4 inch by 3/4 inch by 1/32 inch covered by a 1/4 inch of cheese on a Ritz cracker and 3 hours later the PTSD released me. Green butter has a bad taste. The Hemp oil (CBD) helps with pain and it is an over the counter.

Going through my over the counter supplements, I remember how well Valerian root worked so many years ago but left me with the drugged hangover feeling.

Starting over. More patience. Will the VA doctors accept that I have sero-negative Sjogren's, Type 3 diabetes, PTSD, and everything else.

(((Elaine))) I hope at least you are not starting over.

[ellieas]

 I definitely know what you mean! Some days I don't want to talk to or see anyone. I hate not being able to do what I want.I am still trying to figure out the new normal.
We will still have more happy times but some days that seems like a joke.

Thinking of you

Lesley

[Carebear]

Dearest Elaine,

Yes - You are an optimist!
Yes - Your patience will return!
Yes - I'm so sick of being sick too!  I only wish I could step out of this stupid body of mine and enjoy a life without chronic illness.

It's almost like you've been inside my head, Elaine (empty up there, isn't it?).  This last year has been my worst ever, health-wise.  It is exhausting just trying to keep up with all the medications, supplements, treatments, and appointments.  And don't get me started about my spouse who isn't "handling my illness very well".  Bummer.  Must be so hard for you (jerk!).  Sorry, Elaine.  I didn't mean to say that one out loud. 

Tomorrow is another day, Elaine.  We have to keep believing that there is hope.  I don't know who I'm trying to convince, really.  You or me...

Thanks for making it safe to unload a bit.

[susanep]

Dear Elaine,

Another day will eventually look brighter to you again.
I had this type of day today. I had an appointment to my local clinic for my always ongoing kidney problems, and I had an emotional day that my husband seen too. I cried and didn't go, and said I needed to go when I wanted to on my terms to feel some control in my life. Everything will work out, but it was one of those kind of days where I was feeling enough is enough.

I am on my fifth week I think of my methotrexate and folic acid so I wonder about my blood work how it will be.

All these drugs etc. what we can do and can't do really takes a toll on our mental health, but as another said, what choice do we have.

Strange thing is after I got out some of my emotions and frustrations and tears to my husband today, the rest of the day went better. I still burn when I go often to the bathroom, and have  my usual diarrhea, but something felt better.

You are in my prayers for a lightening of our spirits as we continue our unwanted fight.

Hugs,
susanep

[Carolina]

A big HUG to Sjogren's Syndrome Foundation for the support for our wonderful forum.  Without this platform, most of us would be completely isolated in our 'disease'.

I so loved the tears and support I got from each and every one of you today.

Hugs,  Elaine

[Sharon]

I completely understand where you're coming from Elaine.
This illness really takes a toll on us in so many ways it's difficult to comprehend
at times, not to mention try to control all (or even some) of our many symptoms.
You have really been through the ringer and have kept on fighting the good fight for so
many years now, I have no doubt you'll continue to find ways to control any symtoms that
come your way!
From my long journey with IBS I can tell you the symptoms can come and go and over the years
I have had periods of immense improvement.
Sending positive thoughts your way....

-Sharon

[Kathy57]

Elaine,

I think maybe most of us can really sympathize with you!  We are all "sick and tired of being sick and tired!"  😞

So many times it seems hard to just get up and get going in the morning, but then something happens to make the day look brighter. 

I agree that without this forum, we would all be terribly isolated.  I thank God for the advice and comraderie that we find here on any day of the year, and at any time of the day.  Someone is always here!👌😊

Hoping that your mood and fighting spirit will rise.

Kathy

[lorigacc]

Hang in there Elaine. So many of us really do understand the feelings you're having.  Wish I could say something that would comfort you somehow, as you have been there for the rest of us so many times, but I am not good with words.  When I am feeling down, I try to find something for me that takes me to a comforting place. Being around my 2 year old great grandson helps these days. He doesnt see the sick me....just sees his grama.  I will keep you in my prayers.

[Deb 27]

I believe it can mostly be described as frustration with a chronic disease Caroline.  You are usually very optimistic and help lift others here up. It will return! Perhaps the lack of sleep is contributing to how you are feeling??

This forum is a real blessing for all of us. Nobody else understands! I rarely talk about this to friends. I don't want sympathy or the well meaning comments. Unless you have dealt with this or something similar, you have no idea. Certainly the doctors don't understand-:(

Many thoughts and prayers for the happiness to return! And much gratitude to everyone here and those who started this forum.

[Nymph]

I only read the first post, but it will, Elaine! If you didn't get fed up with all of this, you wouldn't be human. But you won't be this annoyed forever. You've got mad skills!

hugs,

Nicole

[Carolina]

Lol, Nymph!  Mad skills....I'm going with that.

Hugs, Elaine

[irish]

Good little saying. Maybe we could all join together with our mad skills and start a business.....Like maybe find the cure to all this junk. HeHe. Just a thought. We do waste a little energy with our mad skills from time to time. Irish