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  #311 (permalink)  
Old 09-07-2002, 06:10 AM
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Morning

Janet, I checked out that site and then sent it on to my hubby, daughter and son. Told them it was a brief statement about what my daily life was like. After my hubby read it, he gave me a massage. Usually I have to beg him to rub my back or my hands or my neck because he doesn't like lotion on his hands. I'd bought this bottle of Neutrogena body oil that is fragrance free (a light sesame formula) and he said it wasn't as bad as lotion. I think it lasts longer than lotions but maybe he was just feeling like helping me more. I had taken a hot bath before the massage and then took a muscle relaxant after and I slept until 8 am this morn. WOW Unfortunately after sleeping that long I had difficulty getting up. LOL But I could stand a good nights rest more often. Wouldn't it be nice if we could make that a Friday night ritual so I'd get 1 good nights sleep a week? Usually by Friday night after working 40 hours a week I hurt so bad I just want someone to shoot me and put me out of my misery. It's really hard to force myself to fix supper that night, too. Maybe we could just grab a pizza or sandwitches that night and make it even easier on me. I think I'm getting a plan going here. Thank you, Janet.......

Val, I can't say that I've ever had that happen to me. And yes, it does make it difficult to talk to your Dr. if your hubby works with him. Hmmm Hopefully one of the other ladies on here has had a similiar experience and can offer some suggestions. Between my hubby and myself things have slowed way down in that department. We do more snuggling and kissing and holding hands than sex now a days. Not that we've stopped sex altogether, it just doesn't happen as often because hubby has more difficulty now a days. Don't get me wrong, I enjoy having sex with my hubby, but I really like the affectionate way we treat each other now. Maybe you should try to talk to your hubby first and see if somehow you might rearrange the way you make love to each other so that it isn't so stressful on your body. I know it won't be easy because most men don't want to hear anything negative about that. Oh, I'm no help. Please, does somebody else out there have an idea?

Will be seeing my granddaughter sometime before lunch today. Oh, I hope I don't cry and scare her. I'm trying real hard to get myself ready for this. I think I will be ok. Maybe I'll grab an onion when I hear them pull up and start peeling it. ;-)

Well, I'm off to have a fun day with the grandkids. Here's a gentle hug for everyone. Take care.
  #312 (permalink)  
Old 09-11-2002, 07:06 PM
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How is everyone?

First thing, how is everyone doing? I hope we are all having a pain free, stress free, day.

I have been getting some great sleep lately. I almost hate to say that because I don't want to jinx it. lol

My question is: Do you sign up for events at school, work, church, etc??I hate too because I never know if it is going to be a good day or not. Then if I have to cancel, I feel so bad. How do you handle this?

janet
  #313 (permalink)  
Old 09-12-2002, 05:43 AM
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Hi Janet!

First of all (shhhh!) don't jynx yourself, but good for you (Shhh) Zzzzzz....


I have had this issue about volunteerism too. I have two young girls, 7 and 12 and the PTA and the Scouts are always approaching me. I have a bit of an "edge" because with my bad back going out time to time I have been seen hobbling around...but for the most part fibromyalgia is an invisable ailment.

So when people ask me to chair a committee or lead a troop, and I don't feel I can do it, ...I make direct eye contact, and try to make physical contact, (like touching their arm)..and without any defensiveness or hostility I say:

" I am happy to do *whatever* I can, but because of a chronic illness, I *can't * make the commitment to take a leadership position. I would *hate* for my illness to compromise the effectiveness of the {cause, committee,group,activity,etc.} So *please* put me down as a {helper, assistant, associate, supporter, etc.} and I will do whatever I am able to do."

I give them a warm smile, and direct eye contact . This is usually taken at face value with genuine acceptance. Some will ask what my illness is, and sometimes I will explain, sometimes I will just say it is a "chronic pain and fatigue condition for which there is no cure".

My little speech has opened up so many doors. So much so, that even though I have said I can't take a leadership role, with support and accomodation from people, I have been able to do just that.

I have been a troop leader in scouts. But I have insisted on parent involvement up-front. and have explained to them that if there is not enough suppport, that the troop will be diabanded.

I have chaired many committees in many different community and school organizations, and have even served in the capacity as Executive Director of a non-profit volunteer community 501c-3 corporation for a 2 year term.

But the people I have worked with knew about my health and have supported my needs for flexability of meeting times, and work loads, etc. I have always appointed co-coordinators to work with, and never been a "glory-hog" on any project or committee.

If you have a good base of support and the people around you know about your condition up front, and are willing to work around your fatigue and pain, and work with you to a common goal...you can do any and everything you want. You can be a leader in any area of the community despite your diagnosis.

Anyway, I really do use that "speech" I wrote out in quotes. And although I 'm going on and on in this post, I also think it's important to get involved in things despite being disabled with the fibro. I think more people need to see us, need to know about fibro, and need to see us living with it every day, and how it does limit us, and how we cope. I know I have educated people in my community about Fibromyalgia, just by them seeing me live with it.

Val
  #314 (permalink)  
Old 09-12-2002, 02:55 PM
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Wow Val

You are a truly amazing woman. The more I learn about you and from you the more amazed I am. Wow. I always just excused myself for fear of not being able to see a project through. You are so smart. I'm just gonna close now and sit here and be bowled over because I never thought of doing what you have done. ;-)
  #315 (permalink)  
Old 09-12-2002, 08:25 PM
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Yes, Val I agree with Ladyinmaille...you are an amazing woman!

I just hate to discuss medical problems with everyone, such gossips they can be. When I was working in the medical field we were always told to "buck it up" and do it.

Glad I am out of there. They constantly wanted you to make a choice between them and your family. We were expected to work sick, afterall it is the medical field.

janet
  #316 (permalink)  
Old 09-13-2002, 04:40 AM
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blushing Aw, shucks..

Well, thanks for the complements. I'm not sure I deserve them. I just feel so much better about myself when I'm involved, and see myself as a leader, despite my disabilities. I do it for my ego really, so I'm embarrased by your praises.

By laying things on the line up-front, I don't feel guilty and irresponsible when the fibro keeps me from completing something, or prevents me from showing up somewhere, because I already warned them it might happen. (And I already have a Co-coordinator working along with me). And besides, I like having a partner relationship. So the whole set-up really works out for me.

I like to say, if Necessity is the mother of invention, then Fibromyalgia is the mother of compromise.

And Janet, they can't "gossip" if you are the one doing the talking!
Why don't you share with your congregation one Sunday about this "Invisable Disease". Talk to them about what you yourself suffer with, and raise funds for reasearch? (That would shut them up.) There is a non-profit Fibro association that would love the funds I could find that web-site for you.

But I do know what you mean about working in the health care field when you are sick. They're the worst employers!

I used to pull the ambulance over to the curb, (lights and sirens on) jump out, be sick to my stomach, get back in , and continue on the way... nobody wanted to hear how bad I felt. I couldn't get relieved of duty. And if I just took the rig out of service without authorization and someone died waiting for an ambulance because of that?? I'd never be able to survive the guilt. I sometimes had to make patients WALK to the ambulance because I was too sore to carry them, or I'd ask the family, or a neighbor to carry the stretcher. Now how pittiful is that? When I would finally get to the ER, the docs would send me home ... but that was a long and painful process just getting there. It was awful.

I'm glad I'm out of that arena, and doing life on my own terms now. I just hope SSDI comes through for me, So I can get my family off the financial edge. That's the major stress in my life these days, even more than my health.

You'd think I was trying to rob the king of Persia... Oh well

Thanks again for the sweet words. You brightened my day.





Val
  #317 (permalink)  
Old 09-13-2002, 05:15 PM
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Medical Field

Ok, that is bad. Expecting people in the medical field to come to work even if they are sick. That doesn't sound good to me. I'd rather have to postpone an appointment then go into a emergency room or a Dr's office and know that someone there, ie, Dr., nurse, receptionist, is sicker than me. EEEEEEKKKKKKK I'm sure I don't want to catch what they have and add that on to my own illness. I have a niece that works in a nursing home and they get real nasty with her when she is sick. I'm glad you ladies don't have to work in the medical profession anymore. I also hope disability will come through for you, Val.

At the office I work at the rule is if you have a fever or are vomiting, do NOT come into work. If you do and I find out, I'll send you home........

We also have the rule that your family comes first. And I do mean first. We have very flexible hours and let the girls make up the time after hours or on weekends if they like.

I'm not saying that the other girls don't grumble if they have to work a little harder because someone is off because of illness or family needs but I then remind them that they are afforded the same treatment when they need the time off.

That is a cool saying, Val. I'm gonna have to try to remember that. Sounds like something I should stick on the wall above my desk.

Janet, glad to hear you've been getting some sleep lately. Since the Dr. increased my medication, I am sleeping a little better, too. We had something going around the office so all of us gals have had our share of dizziness, nausea, headaches, bodyaches, etc. In fact the gals have been feeling like we feel everyday of our lives.

Well, its 8pm and time to take my meds and get settled down for the night. Take care everyone. Here's a gentle hug from a little ol' lady in chainmaille.
  #318 (permalink)  
Old 09-13-2002, 06:29 PM
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Ladyinmaille,

Glad you are getting more sleep...amazing to see how sleep will solve alot of problems! I think more and more people are finally talking about feeling like crap more now. It is either that or everyone is going thru menopause at the same time! lol My FMS is more acute during my monthly cycle....so hormones have to play a part too....so will I not have pain when I no longer have a cycle???? Sounds wonderful to me!

It is great you have a job that is more flexible with the workers and family obligations. My fellow workers grumbled all the time...such negative people and since our job deals with people they were such jerks at times. Our boss was a poor manager...she would have her favorites and you know how easily that can be taken advantage of. Everyone should be treated the same but since we didn't have a Union they could do whatever they wanted.

As they say, that is water under the bridge and life is much better for me now, we are not rich, but we are paying our bills. Thank the Good Lord for that!


Ladyinmaille, what type of work do you do?

janet
  #319 (permalink)  
Old 09-14-2002, 07:01 AM
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Title Insurance

I work in an office that sells Title Insurance. When people buy or sell real property (land), they get title insurance. We do a 60 year search at the Courthouse and locate all the easements, right of ways, judgments, taxes, ownership of the property. Then we give them a final policy that proves they own the property and if they are taken to court for whatever reason, our attorneys defend their ownership. Unlike other types of insurance where you have to pay yearly premiums, this is a 1 time charge for the length of time you own the property. Before title insurance they used abstracts of title. Big thick books that gave you copies of all the documents relating to your property from the beginning of time. I love reading the abstracts, they are history, and history was one of my favorite subjects in school. Maybe that's why I'm so attracted to Ren Faires, they are a part of our history.

I started out there August 16, 1988, part time, organizing the office. The office opened its doors in June 1988. There was 1 other lady working there, the manager, and a part time man that divided his time between our office and another office. He and I are still there. He is a vice president and I manage the office. Since the blowup between the vice president and myself over stupid stuff, I have backed off on my managing duties and delegated them to other ladies there. Now if my son and son in law can get hired full time, the jobs they have right now are temporary positions that can work into full time positions, I hope to retire in a year from now. If my health will permit me to work that long and if I don't have any more confrontations with the vp. This winter when I start riding back and forth with my hubby, in the summertime he takes the aspencade to work, I will work from 6 am to 3:30 pm 4 days a week. You only have to work 32 hours a week to be considered full time there. That will give me 36 hours a week and a 3 day weekend.

Looking back over this post I got rather wordy with my reply.

The very thing I was talking about, family coming first was what the vp and I blew up about. I had 4 girls with very good reasons for needing the same day off, that left 4 girls to man the office, he threw a fit because one of those 4 wanted off at noon and he gave her permission to leave which meant he had to come in on Saturday and make up for the letting the 5th girl go. Somehow, that equated to me doing something wrong. See, stupid stuff. But as long as I have any authority in the office, we will hold true to "the family comes first", and he can just knawl on me as much as he wants. I may be short and old and sickly, but I am a fiesty old broad. (Imagine a little old broad with her little fists held in front of her here) I get the wind knocked out of me but when I stand back up again, look out. I'm like the tazmania devil.

Anyway, that's me, that's my job but thank goodness it is no longer my entire life.
  #320 (permalink)  
Old 09-14-2002, 01:19 PM
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Interesting work, we had an abstract for our 100 yr old farm house...then when we purchased this home...we received title insurance. Strange...I like the abstract better but I guess due to the size of the document, it is easier to give you Title insurance.
Also we had to pay to get our property surveyed...strange in IN. the sellers pay for that!

Are there very many cases that have to go to court? I know when we pay our taxes here it is up to use to make sure we are paying taxes on the right property. With the descriptions of our property, it is so lenghty and I sure hope I am paying taxes on the right place. lol

I hope your health holds till you can change rolls and be at home. You will be amazed how great you will feel...

Now since our weather changed again, cold and damp...my shoulder is killing me...but heck at least it is only one shoulder!lol;-)

Take Care and have a good work week!

janet
 
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