Bummed

[piglet]

Hi guys,
Just needed a hug and I think this is the only place I'm likely to get one. I'm recovering well from the OHS back in April but now Karma has decided that I haven't suffered enough, what for I'm not sure. I also have Rhuematoid Arthritis, for those who don't know it is a autoimmune desease that attacks yur joints, anyway it's decided to have a huge pity party inside me and it hurts like a son of a B. Must be a good party cause every (and I mean every) joint is involved lately. I'm assuming it's the west coast low pressure. The thing that hurts the most though is that all my friends and even my family to a degree are just ignoring me. Not one of my friends has called me in at least a month, except one and she talked to my husband cause she needed him for something. I'm soo disappointed in them that all I seem able to do is cry. I know I'm no fun to be around when I'm sick and in pain but they could at least call or come over for tea or a game of cards. To give you an example, I posted on facebook that I was starting my self-injections and to wish me luck, and one of my friends replied, are you coming to my party? Is it me or is that a little insensitive? My Friends use to call all the time but since the endocarditis and OHS they are just ignoring me. It feels like they've written me off as "she's no fun/use anymore" and it hurts soo much. When any of them had been ill or in the hospital before I was there for them. Whatever I guess I just get new ones. Sorry for the rant , but you guys are all I have now it seems.

 

[debster913]

Piglet,

I am so sorry to hear of your new medical issues. I, too, have dealt with other medical problems post-op; the latest is that I might have asthma. My lung function has never been the same since my valve repair five years ago.

It seems that many times our friends and family seem to "bail" when the going gets a little rough; but perhaps your friends and family don't know how to deal, and their "best" reaction is nothing at all. I don't know your friends, so obviously I can't pinpoint what exactly is going on with them; however, why don't you try asking them. Say, "Hey, I noticed we haven't been spending much time together. I'd really like to see you. Can you come over/talk (fill in the blank)?" Then you can best gauge their reaction.

I hope a HUG from a member who hasn't been on VR much lately (me) will help, and fel free to PM me any time.

Best,
Debi (debster913)

 

[escargome]

Hi little piglet, rant away. Here is that HUGE HUG (((((((((()))))))))) that I hope lets you know that you are NOT!! alone. Even though I can't physically see you I can still send you a ton of positive vibrations. People are funny, many don't know what to say or how to cope with a friend who on the outside seems fairly normal (after all you don't have a huge hump on your back or one eye in the center of your head) So in order to allow their little brains to deal, they don't say anything and just leave you without any kind of moral support. As I said people are funny (ha ha). Anyway, whenever that pain gets you down and you are ready to rip out your hair, just come on here and someone will be around after all we are a 24/7 kind of family. Hope that stupid low pressure moves it's butt alone cause even though I don't have Arthritis I am going nuts with sinus pressure (small stuff compared to you). Hang in there little piglet from this little cow.

 

[Jkm7]

Hi Piglet,
I'm so sorry to hear the rough road you've been traveling. Hopefully, things will get better for you....... very soon.

It's so sad to read your friends have been absent but I have theory about this kind of behavior. You are not the only one to whom this has happened when serious illness arose not that it feels any better knowing others have been through it. I think people are frightened by serious surgeries and illnesses. It's as though they are afraid it's contagious and they don't know how to cope so they don't. It is painful and selfish and cruel but they are running in fear that something so serious could happen to them.

Who knows if I am right.... I don't know your friends. But I've seen this happen more than once from people one would expect more.

We're here to lend an ear and send cyber hugs whenever the time is right for you.
Take good care and know you are not alone.

 

[JUST-WAITING]

Hang in there- I had my second OHS in seven months- I am now at week three from my last saw job. This surgery left me with a right hand that will not function right (pinched nerve) to add to my arthritis- but I am getting stronger and better every day - I am sending you prayers and hugs - wishing relief from pain and stress. Hang in there.

 

[Bina]

Piglet, those friends just don't understand what we go through or maybe they just don't know what to say and how to
approach the mysterious issues that we can have. Thankfully there are some great support sites and even when I
play games on FaceBook I have found fellow heart patients and others taking Coumadin. We have a little bit more in
common that strikes up a kinship.
Chin up.

 

[njean]

I concur with the previous posts and can relate to your feelings of abandonment by those you hold dear.

I've always been the first one to take the pot of soup or run an errand for any family members and/or friend when they are down and out. But when it comes to me, I'm lucky if I get a call. In my mind I guess they figure that I have been through so much crap in my life that virtually NOTHING can bring me down! If they only knew.......

And that's just it, dear Piglet, they don't know. They can't grasp nor comprehend the pain, the ordeal, the drama that we have been through and continue to deal with on a daily basis. But we can....and we're here to give you a group hug and to tell you "we love you, we hear you and we understand!"

Hang in there!

 

[piglet]

Thanks soo much for all of your kind words and hugs, they mean so much to me you have no idea. I know my friends reaction is common but I guess I gave them more credit. My RA came befor the OHS, in fact it was the meds to control (Ha, that's a laugh) that allowed the bacteria to attack my valve in the first place. I think many of my friends think that it's 'just' arthritis so what's the big deal. "My dad had arthritis and a by-pass and he's not whining." If they bothered to look it up maybe they'd get it. As for me I'm just tired of explaining it. AAh well, that's life I guess, I'm just having a perticularly painful week, and having trouble sleeping, so it's adding to the fatigue that already comes with this wonderful desease.
Thanks sooo much again (((HUGS))))) back at ya

Time to go and get more blood drawn and try and find shoes I can afford that don't hurt my feet, wish me luck

 

[Optimus]

Piglet...oh, and by the way Piglet was always my favorite in Winnie the Pooh! I am sorry about your situation. I think I am in a similar boat. People are so busy with their own lives, and really have no idea what it is like to go through something this huge. I know this may sound silly, and I may get some flack from someone for this but....a good friend of mine (professor) suggested that I read Elisabeth Kubler-Ross's "On Death and Dying". A profound lesson for the living." - Life

I picked it up today. I was told that I am going through the process of grief, which includes anger, and sadness. Not that I'm dying...but that I need to understand acceptance. It's about treating patients as human beings. I am looking forward to reading it. Full schedule trying to play financial catch-up since I've been out of the game and have to pay bills. I feel very alone many times, one of the reasons I joined. Kids gone, work all the time and a very long difficult year financially and health wise. Chin up, you deserve the best! We really only need a couple close friends, ones we can really trust. <3

Susan.

 

[alesia]

Hey there! I am so sorry you have to go through something else now. You need to talk to someone and let things out, i am here for you! I have an Aunt who has Rhuematoid Arthritis, and shes been trying all sorts ways to help with it. If you need n e thing or to talk...let me know! I am almost 40 now so "partying" is over for me! lol

 

[rubywhistle]

Hey Piglet

This weird friendship exodus happened a bit early for me I am 3 weeks pre op! I guess people dont know what to say and think that they arent important enough to take up this time or somthing.

I went on a weekend trip with my sister ... who cried and sulked nearly the whole time! She kept saying it wasnt fair ect ect then went on about how fat she was....I was a bit fed up with it to be honest I just wanted a weekend at the beach.... so I was like YOUR NOT FAT AND YES IM HAVING OHS! Now can we PLEASE surf? It made me think maybe I am up to visitors but they arent up to me. Haha

It was similar when I had my baby. I ended up calling people and telling them to come and see me they were suprised 'are you up to it?' and 'have all the relitives gone already?' were most peoples responses. So give it a go most people dont know how much you like them until you tell them.

Somtimes we have to remind them we are still here and nearly the same as last time!

 

[CanoeBob]

Hey Piglet

I've got RA too, in my hands mostly, the drug planquil is helping but its slow. Yup most people don't know what having the disease means. Most people think of themselves first, it's work to think of others, to some it comes natural after working on it of course. Hugs too you. I know how you feel.

Bob

 

[AgilityDog]

Hi Piglet.
I work with a gal with RA, about 33 years old. She says if it weren't for the drugs she takes, she' be in a wheelchair. As it is, she's able to run half marathons and bike, and do mini triathalons. Oh, and marry, and work for a living. Some of the drugs gave her lupus, to boot, as if the RA weren't enough.
I see her aching some mornings despite all the drugs, and tired, and it makes me (me!) feel lucky.

You can come here for hugs and cheerleading any time you want!

 

[piglet]

Thanks for everyone for your support, I'm usually not such a whiner, must be the menopause ;/
Bob-I've been taking Paquine for quite a while now along prednisone, methotrexate, sulfasalazine hydrochloroquine and a bunch of others that protect me from the first list. I'm not that happy with the one and only Rheumatologist here in town.
Tomorrow I'm off to Victoria for a symposium on RA, hopefully I'll get some useful information there and mabe some referals to a better Doctor. One that treats the patient not just the lab results.
I was diagnosed a year ago but the more I read about the symptoms the more I think I've had it for years, before this huge flare-up I thought it was just wear and tear from years of figure skating and life in general. 25 years ago when I was pregnant I had a flare that I was told I had bersitus and had a cortosone shot, the pain was better but came and went so I never bothered going to the doctor. I've also had dibilitating headaches for years that seem to relate to imflamation in my neck so it's possible that was RA too. If my Rheumatologist bothered to listen he'd know these things, but all he does when I see him every 3 months is stare at lab results on his computer screen and add more meds. He's never even examined me other than the obvious knuckles, wrist, that are swollen. My feet are the worst and he's never even palpated them, just looks down from his 'throne' and says ya they are still quite swollen. He always seems to be in quite a hurry, I've never spoke to him longer than 5 minutes.

Thanks again for all your words of encouragement, I'm feeling much less defeated today. :angel:
Wish me luck tomorrow

Hey alesia!
The last race at Woodward is Sept 24-25 I think we are going to this one, if you come up, ask the guy at the gate to page or radio for Peggy we can compare zippers LOL

 

[Duff Man]

I don't know what it's like to be post op, but I feel your pain on the lack of empathy from the entire healthy world.

 

[alesia]

Hey Peggy, I use to bring a cooler and sit and watch the races all the time! I always wanted to do the wheel to wheel! I had the fast cars and drove everyone crazy in town, when i was younger and should have let it out there! It sounds like you do feel better and i am so glad! This Warfarin is not for me...my INR was up to 7.7. Well again i DO NOT drink often, but was at 2nd bridge (sprout lake) and had 4 coolers. Yep cranberry ones...WTH? I have an Aunt who deals with doctors for that and i am going to ask her alot of questions and get back to you. From what i know, she did not want to take her medicine for Rhuematoid Arthritis. She was a nurse and didn't like the side affects. But i will get back to you soon. And thought of you to-nite i was just at the Galaxy theatre, wondering how you have been! TTYS!

 

[BCMike]

Hi Piglet!

What happened to the weather? I can't believe how it just turned so fast!

I can tell you that I completely understand the mass exodus. I'm sure there's a slightly different reason for most, but I think it's mainly because people don't know how to behave and it makes them uncomfortable. With all of the things people have going on, it's certaintly understandable that they would put off situations that make them feel awkward - I think it's just human nature.

I really like Debster's idea about reaching out and just simply pointing out that you guys haven't been spending any time together and that you miss them. I know it seems backwards that the person in need has to initiate. I too was hurt by a number of people a few times throughout my life when illness has attacked me.

Maybe it's just human to want to be understood, but I'm not sure anyone can ever truly understand what you're going through. However, people that have been through similar situations do have some kind of special understanding. That is the blessing that is this forum and that's why group therapy can be so therapeutic.

I wonder if there's any kind of support group for people with RA in your area? I know that one of the best things that I ever decided to do was to go to a support group at the MS Society. It took me a few years after diagnosis to finally go, but, wow - what a difference it makes being around a group of people that are going through some of the same things!!! I went from practically going insane over the fact that my friends and family just didn't get it - saying how I look so well, but I was barely up to looking after myself to feeling so incredibly normal and having some great ideas from how people in similar situations have learned to cope! Before I went, It actually made me start doubting whether it was all in my head. Well, I guess technically it is all in my head!!! Now I know I'm not going crazy and that there are thousands going through what I'm going through.

Anyways, I feel your pain! And, yeah - maybe just get some new ones! It's funny how well we think we know people and then something like this happens. Don't write them off yet though, just give it some time. In the meantime, why not look into finding somewhere to meet some people that better understand what you're going through? I know, there's this forum, but there is something more 'real' and fulfilling about being around friends in person.

Good luck, and take care!!

 

[OldManEmu]

I am more pragmatic regarding this issue..
The majority of the population do not suffer chronic or debilitating life long health issues until 70+ years of age and are not interested in dealing with them unless it is a partner or child.

 

[piglet]

Alesia,
Thanks for thinkin of me. That sucks about the coolers at 2nd bridge, how long are they keeping you on the warfarin? I've been off them for ages, in fact I think I was off them after 10 weeks or so.
Maybe next year if the doctors OK me to race I can take you for a run in the ladies wheel to wheel or the team relay at least, it's abit less bumpy. I've run as a passenger in the mens event and it's an absolute ball! As for foregoing the meds for the RA, it's not really a recomended option for me as my feet and hands are already starting to twist. I think I've had it for years and just put up with it untill it became unbearable and went to the doc thinking I'd injured myself, that's when they tested me.

Hey Mike,
Thanks for your encouragement and advice. This weather blows, not much of a summer huh. I have looked into RA suport groups up here and there aren't any. I'll let you know what I find out at the symposium in Victoria. Most of that sort of thing IS in Victoria, I guess cause that's where all the money is, maybe I'll start one.

 

[CynBrooks]

Hello Piglet,
(((((((((((GREAT BIG HUG TO YOU))))))))). Sometimes the ones we love just don't know how to express themselves to us when we are having health issues and are down and out. Hang in there, you stay positive and don't let it get you down. I have a couple family members that are they way you say yours have been. My Dad told me along time ago "kill'em with kindness". I hope you can talk to them and let them know just how you feel about things and hopefully things will become better for you soon. Take Care and PM my anytime. Have a Great Day!