Friends that don't quite "get" it . . .

[MelissaM]

Howdy!

I look forward to participating in the "post-op" section of these forums. . . but until then, I will post here.

While many in my support network wish to be helpful, they think that my need for rest and lack of energy is no different from their day-to-day fluctuations in energy or sleep needs, and don't really understand when I have to cancel plans.

I am wondering how others awaiting surgery handle well-meaning friends and acquaintences who don't quite "get" that there is something real that is draining your energy in a BIG way. ( Some days I wish there was a big, bleeding lump on my head - at least people could see something was wrong! )

Thanks,

Melissa

p.s. It is a relief to be part of a community where people not only understand but may also be confronting similar issues.

 

[J.B.]

Melissa, am unable to advise you on those who do not understand what a person is going through with a Valve that is not working properly.

I can however tell you that when the surgery is over, in a very short time you will be feeling much, much, better. At least that has been the case with me, and I am sure it will be with you. Keep us posted and the best of luck.

Do not waste your energy trying to explain something to someone who will never understand, unless they are there.

 

[Ross]

J.B. said it all in the last line. People who don't have the problem, will never understand the way you feel. Watch out when you do have your surgery and return to life. People seem to think that this is a simple "Appendix" or Tonsil" surgery. They don't grasp the concept that you are not normal for a couple of months afterwards. They expect an immediate return to normal.

 

[martha]

Melissa,

Yes, it's true, those who are our friends don't understand. Before my surgery I got sick and tired of trying to explain to people what this was all about. I think the only thing you can do with those is be blunt and leave it at that. I'm so sorry that you are experiencing this. Going through this is hard enough, with out our friends understanding. martha

 

[Nancy]

Hi Melissa-

What you've expressed is about what many people find. There are only a couple of people outside of this site and the medical field that understand the nature of Joe's problems, our daughters.

Other than that, no matter how many times I have tried to explain, they don't get it. Some can't even remember that he had heart surgery (he's had 3, 4 if you want to include the pacemaker). I just don't pay attention to that anymore. As long as Joe and I understand, and he has doctors that understand, that's all we need.

When he applied for Social Security Disability a long while ago, we were told that he wouldn't qualify because he "looked so good". Ha! Since when does outward appearance have anything to do with what is going on inside someone's body. Well, he qualified, in spades.

But that's what keeps many of us coming back here. You don't have to go into long-winded explanations and then watch someone's eyes glaze over. We really do understand what the deal is.

There is such a broad base of information that there is most probably at least someone else who has experienced something similar.

So come here and enjoy the companionship.

 

[fyrfytr]

Hey Melissa,
And I thought I was the only one with friends like that. Just like everyone else has said there is only a few that understand. Nancy said it best, Welcome and enjoy the companionship.
Dave

Keep your fires small!
________________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies

 

[JimL]

As far as the friends who don't "get" it are concerned:

I think they are more trouble afterwards than before, but maybe that is because my surgery came on so suddenly that I didn't have much before time.

If you have friends who do get it, perhaps they can serve as a buffer zone to protect you from the well-meaning but misguided ones. There is a time after surgery when stress is not easy to deal with; someone suggests that it is several months; I wonder if it isn't several years.

I am still amazed at how many people, even those close friends, can't distinguish between valve replacement and bypass surgery; they are quite different.

 

[ccrawford]

Hi Melissa - Welcome to VR.com.. Six months ago, I was just a guy who felt like he was getting old fast. I had very reduced stamina, and a need to take frequent breaks. I knew very little about the world of heart care. Today, after an aortic valve replacement and single bypass, and many hours at this site as well as other reading, I know a lot more. Of course your friends don't understand - they couldn't possibly. You have come to a site where everybody understands, and everybody who participates tries to be helpful. I encourage you to browse the site a lot, and ask a bunch of questions - that's what we're here for. Chris

 

[MelissaM]

Thanks for your collective wisdom.

I consider myself lucky to have found such a caring group of people who instantly "get it" and are so willing to help and share - WOW!

I will keep you posted on before/after surgery attitudes. Like your husband, Nancy, many friends think that I "look good" and should be up to doing, well, just about everything.

Perhaps after surgery, when I don't "look so good" people will be more understanding, but based on your posts, I am prepared to face a lack of understanding even then. . .

. . .and gain a bunch of understanding here!



Cheers,

Melissa

 

[LoraW30]

Melissa, your post is what helped me decide to register with VR.com. To not have a group of peers to talk with can be very frustrating. Many of my friends and family try to compare their everyday aches and pains with what I have lived with my entire life. It's nice to know there are people out there who are willing to share their own experiences and help each other out.

Thank you,
Lora

 

[ccrawford]

Melissa - My buddy Bonnie normally asks all the "nosy" questions but I guess she's busy. What can you tell us about your condition and prospects for surgery. It's a nosy question, but one that will help us channel some information back to you. Also, how do you feel about surgery and what kind of questions do you have for us to answer. I know that when I first found out I was likely to have surgery, I about hit the wall. All my friends here went way beyond the call of duty, and by the time surgery time rolled around, I was ready, willing and able. Talk about night and day. Let us know how we can help. Lora - welcome to you too, and all the above pertains to you as well. We're getting so many new members that we're gonna run a national candidate for president ! Chris

 

[joy]

Hi Melissa and welcome to our wonderful family! I guess my experience "takes the cake" when we are talking about people who don't understand. Friendwise I was very lucky, and my friends were great! But when I got out of the hospital, I called my employer, and asked when I could possibly go back to work, and that I needed to talk about my hours, and they told me I no longer had a job, that they didn't need to deal with my illness. I just about fell off my couch when she told me that! I guess only people who actually watch you go through it, and people who have been through it would actually understand. We will always be here whenever you need to vent or just need advise or to talk! Just don't let anybody get you down, ok?

 

[Gnusgal]

Joy, was your ex-employer aware that firing you for your health is illegal??? That is so wrong!

 

[nadi]

Welcome!

Welcome!

I just wanted to add my welcome to both of you!

You both have found a great site! As Chris said this is the place for all the questions you can come up with.

When I joined back in March I was scared!!! I did not know I even had a heart problem before then! ALL of the great responses from everyone here and reading all the old posts my eyes and brain could handle turned me into a "fairly" calm patient(he he) by surgery day(5/5)

Again, If you have "any" questions ask away! If one person doesn't have the answer someone will be along shortly that will.

Take care,

 

[joy]

Hi Niki, In washington state, it isn't illegal to fire someone for health issues. I really wish they would change that, it's stupid. I was out for 2 1/2 weeks, and they treated me like dirt when I got out. I also got turned down for SSI, which I am seriously thinking about reapplying for...Looking forward to yet another major surgery...an LAVH. It feels like it never ends How are you doing? I've been worried about you since you hadn't been posting!

 

[nadi]

SSI

SSI

Joy,

Just a thought but you might want to consider hiring a lawyer for your appeal.

We had to with my husbands( severe back injury-car t-boned him)
the lawyer we had told us that the quickest way to win an appeal is to have a lawyer. We did not need money up front they were paid out of the back payments directly from social security.

Take care,

 

[joy]

Hi Nadine, I never appealled it because I didn't want people to think I was lazy trying to get out of work. Now with the additioneal medical problems though, it is sounding more and more like a good idea. Can you work if you are on SSI? I was just wondering if I could get a part time job to get out of the house if I was receiving SSI.

 

[Ross]

Under the current rules, yes you can work. I'd have to look it up to be sure, but I'm thinking your allowed to make up to $600 a month before they remove you from the program. I look for them to change this ruling soon. If you can work, to them it means your capable of substantial and gainful employment, which means you aren't really disabled. Kind of screwy how they have things written up.

You won't be on SSI. It will be SSDI.

 

[nadi]

SSI/SSDI

SSI/SSDI

Joy,

If I remember correctly the SSI maybe given if you have children and fall under the income cutoff.

Also Social Security just send Ron an info packet on a new program "the ticket to work and self sufficiency program. I have not read all of the info yet. I will try to get it read today and get back to you. I will also try to find the paper work they gave us with all the rules/do's/don't.

Take care

 

[Ross]

http://www.ssa.gov/d&s1.htm