Stress is taking its toll.

[Abbygirl2]

Well, I had written a long pitiful story, but just before posting I changed my mind. I'll simply ask, how are you all dealing with the stress and the many different emotions of this disease as well as the 'normal' everday challenges? I am worn out, tired and losing my grasp on my situation.

I already keep a journal, use relaxation techniques, all that jazz... and am on 100mg of Zoloft.
I also mentioned to my husband the other night that I would like to see a therapist that teaches coping skills when living with a life threatening condition, and he said, "Why, you don't have a life threatening condition."
I forgive him for his ignorance and know that the important thing is that "I" know the truth. I told him to come to the HCMA and learn a thing a two.

Anyhow, short from sitting in a drunken stupor all day, what are some of your tricks for beating the blues and calming the nerves?

Take care everyone,

Pam

[Burton Borrok]

Re: Stress is taking its toll.

Dear Abbygirl Pam,
I just went through an overload situation, and am walking a thin line between being hospitalized with CHF on the one hand and kidney failure on the other. On January 11th I will have some outpatient surgery on my arm to prepare it for dialysis. I am also having a tough time with my degenerative arthritis, and although I hate it, I find myself relying on Lortab more and more. When I find some time I will have to go to an orthopedist and learn some pain management skills. I am up to 250 units of insulin a day and expect I will need another 50 units to achieve good control. I am also taking three different types of lipid control medications. My lipids are not under good control, but there is no other medication I can add or switch to for better control, so it’s as good as it can get.

One of the biggest differences between us, I think, is that I take my Shirley with me to all my doctor’s appointments, and I go to hers, - while your husband is in deep denial. I’ll bet he is not even aware that his position is hurting rather then helping you. He has a major problem in dealing with the situation, and probably needs help more then you do. I’m a layman with no formal training in this, other than the lessons one learns in seventy two years of living, but I think your best course of action is to get your husband to agree to go with you to some counseling sessions. It would not be an easy thing to do, but if you could get him to go with you, it just might help him face the truth and support you from here on.

Right now I’d bet that if you printed off the information at the front of this site, detailing what HCM is all about, you would not be able to get him to read it. It is a difficult situation which is affecting both of you equally, and I truly hope you can get this problem resolved. Everything else will fall into place if you can ever get over this hurdle – at least in my opinion.

With all my medical problems – I now have 16 diagnoses – I am still grateful for every day I get, and look forward eagerly to tomorrow. My wife, who became an epileptic at the age of forty-five and at best has only partial control, and I both still have problems coping from time to time, but we are supporting each other as best we can – and it makes a world of difference. By the way, venting is a very good coping skill – I think you should have posted that “long pitiful story.” I think we all would have understood. Actually, it’s one of the things we are here for.

Good luck Pam. I wish you the joy of another tomorrow, and a much brighter future. Best wishes for this holiday season and for the years to come.
Burt

[sueb]

Re: Stress is taking its toll.

Pam---I have to agree with Bert. I felt very stressed by my condition when my husband didn't understand what was going on. When he heard with me from my cardiologist that I was a candidate for sudden death, his attitude changed. It's so much easier if a couple can share the burden of a life-threatening disease.

Sue

[Abbygirl2]

Re: Stress is taking its toll.

Burt, you always have such great advice, and I really appreciate your input. Sue, thanks for your reply as well, its comforting to know there are some who do understand what life is like on a day to day basis.
So I would like to bend your ear once again.

The first cardiologist that I ever saw told me that I would probably live to be 80 and sent me on my way. My husband has never forgotten that one comment and reminds me of it when I get worried or stressed.
The cardiologist I have been seeing for the past 5 years(different than the one that diagnosed me) is very relaxed about my situation and says because I have such a slight enlargement, and no family history, I am at very little risk for SCD. I have told my husband that this isn't entirely true but he says the cardiologists know more than I do and I should trust them.

He has attended nearly every appointment and test with me, and read the HCM book when I brought it home, and will be going to Toronto with me when I get my appointment with Dr Wigle. He knows all about HCM but..."the Dr's say you will probably live to be 80, so RELAX!!"

But I am the one that feels like I have somebody in my chest playing basketball with my heart. There are also other maladies that I have to manage, whereas he is fit as a fiddle(do people still say that?). Not to mention worrying about the kids, and feeling like a burden etc.

Anyhow, it comes down to him believing what the cardiologists say, and me being the 'second-guessing suzie' that I am, well it leaves us butting heads. Where is the common ground?
He has agreed to join me in some counseling, we just have to find someone who deals with this kind of stuff in our area.

Burt, you and Shirley sound so wonderful, I wish I knew you both. How long have you two been married?

Many thanks, and best wishes to all of you throughout the holidays and years to come.

Pam

[Burton Borrok]

Re: Stress is taking its toll.

Dear Pam,
My wife Shirley and I will be married 48 years on the 23rd of this month. I tell everybody that we’ve been saving for a divorce for over forty-seven years, but every time we get a few dollars together something always happens that we need the money for – and the kids just will not pitch in and help. I used to say that the kids kept us together – neither of us wanted them! I also say that in all our years of marriage we have only had one argument - - it started as we were coming back down the isle. Finally, when I introduce her to somebody when I am disturbed with her I introduce her as my first wife – which is absolutely true. Of course she still is my first wife, but I just don’t mention that part. She does have to put up with a lot from me – but then the reverse is also true. We both happen to get more out of the union then we put into it, and that works well for the both of us.

But on to your story. I think you both going to see Dr. Wigle will do wonders for the situation. Let him describe the effects of HCM you are experiencing, so your husband could understand that it is more then a longevity issue – it’s day to day living too.

On the other hand, how many of the risk factors do you really have regarding SCD. Is it possible that your symptoms are causing you to over react with an unsubstantiated fear? I’m 72 and have had a few run-ins with HOCM, plus at the latest count fifteen other conditions – some rather serious, but I’m bound and determined to enjoy every day that the Good Lord grants me. I have learned to laugh at myself and my troubles many years ago, and it has stood me in good stead ever since.

I believe your husband needs a greater understanding of what you face day by day, and you need a true understanding of just how much exposure you have in regard to SCD. “Ye shall know the truth, and the truth shall set you free.” - - - And while you’re free, how about coming to Vegas? We’d love to meet you guys too. (Do you like sky-diving? Me neither.)

I think on my tombstone I think I’ll ask for them to engrave, “This reminds me of a story. . .”

Have faith in the future – it will get here one way or another.
Burt

[cheerchicken05]

Re: Stress is taking its toll.

I didnt read any of the above posts, so forgive me if i repeat stuff they might have said.

I was diagnosed less than a year ago when i was 16 and pulled out of an extremely competitive sport i had been dedicated to for 7 years. People were shocked at how strong i stayed. i didnt let the stress take me over, although at times it was...and is...definatly here. I think the way that i deal is just by looking at it a lot differently than others might.

we have been diagnosed with something treatable, but not curable. something that effects us every day. something that makes us different and often more restricted than the people around us. Theres two ways of looking at it.

One, we can let it take control of us. we can dwell on how much we cant do. we can live our disease.

Two, we can be aware of it but not let it get the best of us. we can be cautioned but not worried. we can take advantage of all the things we CAN do. we can live WITH our disease instead of living OUT our disease.

its all a matter of how we look at things. Of course it gets stressful. of course it sucks sometimes. of course we get upset about it. but its all a matter of letting it control your life or not.

we were talking about this in my psycology class today. Well, we were talking about roll models. My dad has epilepsy, and he broke 15 seizure-free years the summer before i was diagnosed with HCM and has had trouble getting it back under control. In psych i was talking about how he is one of my biggest role models because of the way he deals with his disease. We both have conditions that effect and hinder our every day life. but he has taught me how to press on, and take advantage of everything we CAN do, everything else that doesnt suck. he's taught me how to be aware of my body, but not focus on it. we both have our frustrating days, where the world seems like its crashing on our heads, but we both are learning how to refuse to let our disease take control of our lives.

i know its hard and often seems impossible, but thats when you gotta step back and ask yourself how you want to live your life...stressed about your disease or conquering it?

well, i'll get off my soap box now. haha hope i helped

[Burton Borrok]

Re: Stress is taking its toll.

Well Cheerchicken,
I’ve said it before and I’ll say it again – you are a remarkable young woman, and I am very glad to know you. My grandchildren (twins – boy & girl) are now sixteen and a half, both have tested with considerably above average IQ’s, but I don’t think they hold a candle to you.

There are other similarities between us – my granddaughter is a cheerleader – she was supposed to be a flyer, but she has taken dance lessons for years and is more of an asset on the ground. My grandson is into all kinds of sports – is now over six feet, and can drive a golf ball further and more accurately then his mom. He is also deeply into baseball and basketball, plus a bunch of other things.

Your dad has epilepsy – my wife has epilepsy. Hers is partial complex psychomotor seizures, which came upon her at the age of 45. Until fairly recently she was having six to eight seizures a month, but now has partial control and the seizures are down to about two a month. Of course she hasn’t been able to drive since 1985, and that has put a long standing strain on both of us. She doesn’t like begging or imposing herself on others so almost all her transportation falls on me, and we live very active lives (for old people.)

Anyway, back to you. I am certain that you will make a rather large mark in this world, and will be someone of significance and importance. I am looking forward to the day when we all can sit back and say – “we knew her when . . .” Your dad must also be a remarkable man to be able to teach you so many important lessons of life, and I expect the same is true of your mother.

I have to laugh at your name though. I know you were a cheerleader, but I doubt you were ever a chicken. (Yeah, I know how you mean it, but I still think it’s funny.) Do well in school Dearheart – we need people like you to go out in the world well armed.
Old Grandpa Burt

[cheerchicken05]

Re: Stress is taking its toll.

Haha--- you're awesome "Grandpa Burt"
yeah dad has partials almost every day, and takes xanex for them. I came home from work today and turned the corner to my house and was shocked seeing my parents rolling around on the grass...the first thing i thought was what do they DO what im not home? then i realized that dad had had a seizer and hadn't come to yet and was trying to stand up and mom was trying to hold him down, so i helped her and now hes just frustrated he lost his license again. His last seizure was in the beginning of april.

I hope someday i make a difference...haha. Right now im trying to get an appointment with my principal to try to get him to get a defibrillator system put in my school. one step at a time, one school at a time. the hardest part is gettine people to listen to you when you're 17. but, one step at a time.

well im off for now, tons of psych homework!!!

[Eileen2345]

Re: Stress is taking its toll.

Hi Pam Abbygirl

You are singing my song girlfriend !!

I live with the same stuff everyday. My husband has been with me to cardiologists, and to therapy and he still says, you don't "look" sick. Ahhh!

In fact my therapist says that his denial is the most profound case of heath related denial that she has ever seen in her 25 years as a therapist.

I could be short of breath, exhausted, and pale and he'll say "oh you didn't make it to the store today." Is he nuts?

I used to say nothing, now I speak up and tell him he is going to have to go to the store.
I can only do so much, if I do not pace myself, I wind up with fatigue hangover for a couple of days. Ugh, I hate that, I get so depressed during those days.

Maybe you have read my post about the scooter. It is time for me to get one. But my husband does not want me to be seen throughout the neighborhood riding a scooter that is used by mostly older people or by people with disabilities.

I hear ya.

Please feel free to vent, I understand and I will chime in with you.

Hugs -- Eileen

[shirleymahoney]

Re: Stress is taking its toll.

Pam

Hang in there, it can get stressful but i have been lucky when my husband found out about this disease he came home and found all he could find on the internet about HCM and he has no problem with the fact i could die since i have lost several family members that were diagnosed with the disease, sometimes therapy does help, i would have a hard time with my husband if he didn't believe me now and i wish you all of the luck, and i do hope you live to be 80

Shirley

[Pam Alexson]

Re: Stress is taking its toll.

Pam,

I think you are feeling the pressure that many of us often feel. You are also head on into the holiday crazies and now you know none of us are going to be able to compete with that chaos.

I know exactly how you feel and it is not always easy to keep looking at that glass and saying ," You are not half full you are half empty!" Sometimes you just have to say it and then you are able to move on. Validation brings most of us to reality and down to where we really are at the moment and it really should only be moments of days , not days and weeks that we feel like this. When we get the validation we usually realize that someone does understand and they care enough to tell us they do by empathizing for a bit. What should happen is then we feel less alone and more willing to reach back up for that bottom rung of the ladder and climb back up on our perch. If this is not happening and the doldrums persist then help is what we need.

We are not any of us above it or unaffected by this disease. We have all experienced sincere emotional pain at one time or another. What works for one will not neccessarily work for the other. Take your time give yourself a break and do what you have to to feel better. We are all here to listen and help.

Everyday I hear my elderly parents say how hard it is to be their age and not feel great. Sometimes I have to bring my reality to them and remind them of all the wonderfull years they have had. It has only been the last 4 for my dad of 87 and the last 2 for my mom of 76 that have not been wonderfull. I gently remind them that I am 51 and I have been struggling and having no wonderfull for 11 years. They usually sit up and realize that in spite of everything they have a lot to be thankfull for. This perks everyone up because then they work harder at being more positive. It is very difficult and a tremendous challenge to try and get others to realize how lucky they have been. However , I feel lucky because life really is wonderfull in many many ways.

Janelle had some very great insight to share with us all. We must hold on tight to all the good we have.

Best wishes to you.

[Sarah]

Re: Stress is taking its toll.

Just today, I realized that after all I've been through, I can deal with anything.

My laundry list of traumas is long and matches many of those who post here, and I won't list it again for those of you who know it (the curious can search the board for my posts and keywords like stroke, mom, death, etc).

How do I handle the stress? Support Support Support. The people in my life who could not or would not walk through my life at my speed are just not in my life anymore. When I need to get through a rough spot, I pick up the phone. Some days I have to call pretty far down the list till someone is home, but there is almost always someone to talk to.

I have a couple family members that don't get it, so I don't "hear" their ignorant comments and I do what I know what is best for me, even if it means I don't see them every time they ask me to come over.

My ex-husband was more concerned that people thought he was a good caregiver than actually being one. While I didn't instigate the divorce, it was one of the best things that happened to me. My boyfriend doesn't expect me to wait on him and do things I can't do when I'm beat.

My friends don't ask me to events they know I can't attend (beach parties, smokey bars) and are understanding if I take a raincheck on others. When i lived alone, my best friend called me every day to make sure I was ok.

I know I can get through anything because the HCMA is here for me but also my friends and family would --and have-- moved mountains for me.

I also highly recommend taking a short (10-15 minute) warm (not too hot) bath with a cup of iodine-free salt in it at the end of the day. Soothing and cleansing.

And love yourself.

hugs,

Sarah