VENTING Just Venting

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
becat
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VENTING Just Venting

Postby becat » Mon Apr 02, 2007 7:18 pm

Ok ya'll I'm going to type this out of my head and then hopefully get over it.
I'm fine but need to SCREAM a bit before I move on. SO no worries and anyone can use this thread to scream if needed.
**************************************************************

I'm tired of explain RLS to other docs that need to understand no matter what this is a number 1 health issue in my life. Yup might be the first time they have dealt with me or RLS, however, listen to me. I know what I'm talking about when I talk about my body.

Since the FIrst of Feb. I have been dealing with 2 handfulls of docs, ERs, and my own GP (hoping he would consolidate all the information and protect me).
My GP is doing a good job, best he can when other docs respond to his calls or request, but some docs don not confer with the important people.
In short they thought my appendix was infected, this is after a Gp visit and 2 ER visits and then a trip to a new OBGYN.

Leaving me with a GI doc to check out my stomach and colon. Well I told them to begin with, my stomach is fine this is in the right area for appendix, but I don't think that is it. This (nice) GI doc decided I needed 2 really strong antibiotics, ok, now my stomach is torn up. I told them this was the wrong thing to do, but here we went. After some 5 days on the 2 meds, I couldn't hold anything in my body, forget taking meds for the raging RLS. After 7-8 days I had to get mean with the "telephone answering girl" (yes I call her that on purpose), I was calm but demanded and threatened to call my GP if this doc could not get his messages. Nope didn't care how it came off, I sign the front of the checks.
I lost 12 pounds in 10 days, tore up my insides and then after the great test GI docs run, no answers.
DUH!!!! :shock: :roll:

I'm no better and worse off RLS wise. It seems that the change in seasons and the way my body has been treated has throw my legs to the wind and added most of my body with it. Why is treatment for one part of the body so hard on RLS? How do we protect ourselves.

Thought of Em most of last week when I had to pull my hair back everyday because if anything touched my face I was sure to injure myself. My back looks like I had a fight with a cat.
I will leave the medical problems for after my son's graduation. I can't risk anything worse before I get to see him and bring him home for 11 days.

BUT when I go back, I will interview at length the new OBGYN and make sure she can handle my whole case not just the normal stuff. I'm done with docs that do not listen, don't care, and just want a check and insurance for all the stupid test they can run. If you don't count me in further than your bank account, I'm counting you out...period.
Just when will these docs understand? Just how hard can someone work with a doc until you slap them and walk out? (not a good idea there then it's assault LOL)
Honestly this shouldn't be that hard.
Its a simply concept, mess with my sleep or my legs and everything goes into a swirl.
Ok, I'm done. Just had to whine a bit.......onto life again.
Hugs to all
Lynne

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Postby ViewsAskew » Mon Apr 02, 2007 10:26 pm

It dam* well shouldn't be that hard. Just shouldn't. It's just plain wrong. Wrong, wrong, wrong. I swear, if I were queen. . .boy, would things be different.

In my Queendom, all doctors would be required to listen empathetically and make nice little cooing sounds of understanding. They would be required to give people in pain appropriate meds. They would be required to do monthly pro=bono work with populations they normally didn't work with, to expand their horizons. If I were queen, we would have a special machine - whenever any doc got a patient and they weren't familiar with the person's problem, they would have to go sit in the machine for ten minutes. It would make them experience all the feelings - physical and emotional - that their patient experienced. If they failed to meet any requirement, they would have to refund the money the patient paid.

I'm sure there are mnny more rules I could think of. . .just give me a few minutes. . .by the time I'm queen, I'm sure to have worked it all out.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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ctravel12
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vent just venting

Postby ctravel12 » Tue Apr 03, 2007 1:39 am

Oh Lynne I was just thiniking about you today and hoped that you are feeling better. Well this certainly answered my thoughts. I am so sorry for what you are going through.

What is really sad about these drs and have to agree with Ann about being a
Queen. If that would work, we all could be Queens for a day, week or whatever it takes to have these drs (or should I say dorks excuse me) listen to you.

Lynne, I am really concerned about you losing that much weight in that short of time. I hope that you are not losing anymore.

Do not apologize for venting as we all do it every now and then. You certainly did not ask for rls nor did any of us. You just need someone to pay attention to what you are saying. No one knows your body any better than yourself.

What can we do to make them listen? I wish I knew the answer to that question. Please get better soon and do not lose anymore weight.

Hang in there my friend and we are here for you always.
Charlene
Taking one day at a time

becat
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Postby becat » Tue Apr 03, 2007 2:58 am

Thank you both.

I'll even take princess for the day right now. LOL Ann the crown is yours, lol, the tiaras mine. :D

Charlene, my stomach is fine after all I put it through. I was like you and didn't like dropping the pounds either. That was a bad way to do it.
However, I'm back on the eating and keeping road so walking will keep everything in balance.

I said don't worry, there is no need. It's most likely (unusual, but likely) scar tissue. And not much to be done about that. No more antibiotics, no more docs for now. I'm good I was just, wellll.........
I was just feeling punk today and needed to whine it out.

Yup, I like the idea of the 10 minute replay box for doctors. I'd make you Queen for a day for that. LOL

Love and Hugs to you both,
Lynne

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ctravel12
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vent just venting

Postby ctravel12 » Tue Apr 03, 2007 5:00 am

Hi Lynne I am glad that you are eating and doing better. Please let me know how you are doing. You know me I worry about everyone. I am like a Mother Hen checking out all of her little chicks.

Have a nice evening.

Love ya and lots of hugs your way
Charlene

Taking one day at a time

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Postby Penguinrocks » Tue Apr 03, 2007 10:20 pm

I love you my Lynne and I know from what you speak...just the non-listening part...i'm sure we all do...

penguin hugs to you my lovey....i sure hope that Graduation is as wonderful as I've heard it can be and enjoy the time you're there...

love you my honey
Beware the Penguin

D4
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Postby D4 » Wed Apr 04, 2007 1:32 am

I'm sorry to hear you've had such a horrible time with so many docs, Lynne.

I think I'll vent a little too. I'm totally exhausted and sleep deprived about 95% of the time. I'm tired of people at work that minimize this and offer their simplistic suggestions of how to get better. Hello??? I'm going to an excellent neurologist who is stumped and he referred me to Mayo Clinic. Before Mayo accepted me as a patient, they reviewed my files to see if there were any tests or different things my neurologist should try because they only want to see the worst cases. I've told my coworkers and others this, so what makes them think they know more than my doctor and the Mayo doctors?

I've got another month before I go there and I'm just trying to get through each day. And somehow 4 days ago, I went from sleeping most of the time (and never feeling rested) to sleeping only a few hours each night. I didn't think I could be even more exhausted than I was, but I sure am. And the comments I get are "Well, you must be getting a lot done at home now that you're not sleeping all the time." Excuse me??? Do they think getting 3-4 hours of crappy sleep leaves me with any energy to do anything???

I'm done whining for now. I just hope I get some sleep tonight. I wish for sleep for all of you, too.
Last edited by D4 on Wed Apr 04, 2007 3:49 am, edited 1 time in total.

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ctravel12
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venting just venting

Postby ctravel12 » Wed Apr 04, 2007 3:20 am

Hey D4 you can whine and vent all you want to. We will be here to listen to you. Your co-workers cannot even know what you are going through or anyone else. Let them walk in your shoes for a minute,a day,week or however long and see how they change their tune.

I certainly understand the 3-4 hrs sleep. That certainly is not a good night's sleep. I woke up this morning and told my hubby I felt like I could of gone right back to bed as I could not wake up.

I hope that you are able to get some good answers and help when you go to Mayo. Please keep us posted as we are concerned on how you are doing.

You know it is either feast or famine. Good luck to you.
Charlene

Taking one day at a time

becat
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Postby becat » Wed Apr 04, 2007 3:55 am

Yeah My Penguin, who knew I needed to whine to see your lovely name around here! :D
I know you understand, all too well. Darn it! I miss you darlin' and I'm so thankful you stepped in for a bit.

D, you have no idea.....I'm ready to explode. My health was fine and what I think happened and what I think I DO KNOW, only one of the docs listens. My GP has been trained for the last 20 yrs, by me and he knows if I say pain or whats up, we better look.
The worst part is that most of these docs are trying to help, but have such a lack of empathy to most of what we deal with.
Your right, making it through a day with little to no sleep, honestly is impossible. I did it for so long that I am sure most people think I'm just stupid. But my poor brain just couldn't function. Forget the body, it just starts to fail on it's own.
WORSE YET, doctors know this and still ignore it like the elephant in the room. uuuuuuuuuuffffffffaaaaaaaaa
D I'm so glad you got the Mayo appt....I would still go armed with information. You know your body, you know your RLS, and don't let them make it something worse or something it's not. I fought that for years.
Sometimes I just wished that we didn't go backwards!

D, walk right in and when you meet that doc, tell him " So, Your going to be my partner in this...Well lets get to it. I'm willing and ready to work. I hope you are too!"

Hugs and good venting and supporting everyone :D

A moon full of love to you all,
Lynne

D4
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Postby D4 » Wed Apr 04, 2007 3:58 am

Thanks for the support Charlene. I will let you know what I find out at Mayo, but I don't go until May. That's still so far away. :cry:

I hope they'll find out something that helps me so I can pass it along here as a thought that might help others. I'm curious as to what tests they'll run. I hope they really dig to find out what else might be wrong with me that is keeping these drugs from helping me.

Diane

D4
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Postby D4 » Wed Apr 04, 2007 4:01 am

becat wrote:D, walk right in and when you meet that doc, tell him " So, Your going to be my partner in this...Well lets get to it. I'm willing and ready to work. I hope you are too!"


This really brought a smile to my face. Yes, that's the attitude I'm going to have when I finally get there!

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Postby stitch » Wed Apr 04, 2007 7:29 am

Lynne I love you and sorry you re going through such a bad time. I can't post now because I am half asleep but just want to let you know I am thinking about you. take care and will talking tomorrow, Jeannie

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Postby Penguinrocks » Wed Apr 04, 2007 5:34 pm

i'm here. don't have much input...just standing in the shadows and listening and watching to make sure y'all are ok...

don't have much to offer anyone anymore.

love you all tho and my Lynne...gurl...got a Boston trip planned yet?

most computer time i get now is at work and being able to write is a luxury ...just take some lunch time and check in...

Give dat boy a hug from me on graduation day...next time the Marines invite me down for a free week, I'm thinking I'm gonna go...

Love you all so much, love you my Lynne...my rock, my kindred spirit...
Beware the Penguin

becat
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Postby becat » Fri Apr 06, 2007 5:00 pm

Penguin my Darling!
You have a world of knowledge, a heart bigger than Texas, and a shoulder stronger than you realize.
If you ever question your worth look at your lovely daughter, she is a product of a wonderful mom. That would be you. You have a ton to offer here, but if you don't feel like it that is cool by me.
To know your still here means the world to me. I miss you too my dear friend.
I love you my dear. I don't know if you know this, sure you don't......but I keep a couple of things near my computer at all times.
Pictures from Long Beach and the family we all created there, that would spread here and keep growing.
A Dorthy and The lion from Miss Ruby.
A picture of Jan and I in Orlando.
And a small pair of Penguins. Yup I do. Little mini floaters for the tub. However, they have never made it that far, as I like my Penguin close.
Yes, I told the hubby the next trip tp Boston I'm going and I have plans. Witch hunts! LOL
it's not on the books yet, but no fear, it will happen for sure. He has to see every store every year, so count on me. I will let you know asap. Yahoo!
A month from today my Marine will wake up in his own bed and home with me. Oh Rah.
You know I will give him a hug from you, I promise.
I'm working with the local Marine Family group here and it's helped a ton.
We're in the process of gathering items to make care boxes for the men and women in the sandbox right now. Feels good to do this job for sure. I understand how easy it would be to just love them all.
You honor me my friend and thank you for the kindred spirit, we'll soar together.
Hugs, huge hugs and all my love in the moon,
Lynne

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SquirmingSusan
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Postby SquirmingSusan » Fri Apr 06, 2007 6:17 pm

Oh, Lynne, I hope you're feeling better. And Ann, can I live in your Queendom?

I'm thinking of embroidering myself (I have an embroidery machine) a t-shirt that says: "Yes, I am drug seeking! I am seeking relief."

Susan


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