Joining with others

Well today I joined this group and I am hoping that as I start on a new journey, beginning today, I will make friends along the way.

From the time I became the sickest and ended up in the hospital 3 years ago I kind of shut myself off from others. Of course in doing that, along comes depression. I had become so discusted for so many years as I went from doctor to doctor only to hear things like, it's all in your head, you have GERD, it is hormonal, your to young to have heart disease, the test aren't showing anything...and so on. Does this sound familiar to anyone?

I knew when I was finally diagnosed with Prinzmetal Variant Angina that women are WAY to often turned away because they do not fit into the form of a man with heart disease. I suffered for 7 years before my disease was found. All it took was a simple test that I had requested several times, a cardiac cath with the injection to see if it would bring on the spasms. Even with this test, I was told that I had a blockage in the left side of my heart and was put on medicine. In 3 weeks I was back in the hospital and had another test done and was told that now I had a blockage in the right side of my heart and was going to be scheduled for surgery to put a stent in. Something didn't feel right about this and thank heaven my family doctor thought so too. In 3 weeks I was back in the hospital and was positively Dx with Prinzmetal.

I was then advised that they were going to be starting a Prinzmetal Variant Angina Study in Cincinnati OH. I had my dearest friend Carol and her family who are like my own who live up there and she invited me to her home and I began the study and am still in it and still taking the experimental drug, L-Arginine. I would recommend anyone with this disease get in touch with this study program put on by Dr. Glueck at the Jewish Hospital.

For some reason, born into a family that never was very close, as I became sicker, family backed away. I do not suffer a disease they can catch by touching or talking to me, I ask of no help from them, I just needed family and friends around me. I am fortunate to have my husband and my son and my dear friend Carol and her family in Cincinnati and so many kind people in my small town. My husband has also suffered a heart attack and is now a diabetic. Just this past weekend friends of ours and our son worked from daylight to dark to put a new roof on our house where it had been torn off from the high hurricain winds. These are the people who keep my heart beating and make me want to pass forward the kindness.

I do believe the depression has come from having to be on so much medicine that makes you feel groggy, sleepy and dizzy. From not being able to work anymore after being used to holding down anywhere from 1 to 3 jobs when my kids were being put through private school. I look at my body changing and aging so quicky and it seems to take so much energy to even put moisturizer on my wrinkles. : )
I also believe my depression comes from my family backing away from me, there are some, including my daughter I have not seen in years. I was going through so many things with this disease and it was almost as though they took it as an insult to them that I was changing but it was not them I was fighting, it was the disease and I was frightened out of my mind.

Many things have helped along my journey so far, acceptance has been the best of these. Accepting I have this disease, accepting that sometimes people "choose" not to be around you sometimes, and accepting that it is time to take a different route on my journey. This is not a bad thing, just different, perhaps more exciting taking a path less traveled and seeing things I would have passed up otherwise.

Won't you join me on the new path? I know there are many of you out there who are sitting up at night, alone during the day or feel lost or depressed also because of what you are trying to handle right now. We do not have to be alone on our journey, we don't have to feel like we are the only one suffering with a disease.

Well, this is my first entry, WOW, I feel like I got a lot out of me. I felt like I was just writing in my journal as I wrote but now realizing that others can read this I almost feel like I should erase it all, but I won't, that is what has kept me alone for so long.

We are not alone.

Dee Marie

By Hise
Posted November 5, 2008 at 5:56 am
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Hi dee marie

No, you are certainly not alone - and finding others with similar stories as ones own helps a lot. And though you write that you pulled away from people for a while, you did actually start a group on Facebook that helped me a lot in the first stages of my heart disease. So I am ever so grateful to you.
The group is still active - I don't know if you know?

Best wishes
Henriette

By goingstrong
Posted November 5, 2008 at 9:33 am
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Welcome to WomenHeart! You have found the place! You have had a long journey and now you are here where there is encouragement, education, and help with becoming the best advocate for yourself you can be!

I would also encourage you to post a note in the forum telling people about who and where (as you did here in your journal) to inquire about the study you are in.

One of the things we can do to help all of we women is to participate in studies that actually use WOMEN as subject (what a unique idea!) so that we can really change the face of treatment for women with heart disease!

Again, welcome. YOU ARE HOME!
Lynn

By gracie62
Posted November 5, 2008 at 10:34 am
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Dee Marie:
Welcome to WomenHeart. You have found a place where people can relate to you in a way no one else can. We share the common thread of heart disease. We have all walked the same path and it is great when a new heartsister joins us.

You will find many, many stories on this site similar to yours. What you have gone through with people back away from you is sad, but even sadder that it is not unusual. When we are diagnosed with this life changing disease, those around us face things they never expected. They are forced to face our mortality - the fact that we can be taken in the blink of an eye - as well as their own. My best friend finally admitted not long ago that being around me makes her realize that it could happen to her. She doesn't mean to not call or visit as much. She just can't relate to me without facing issues she doesn't want to. Her loss. I am still here for her when she needs me.

Isolation and depression are common in people in our situations. I go through cycles. I can be the energizer bunny for days, taking care of this and that and going here and there. Then I have days where I can barely get out of bed. I have learned to accept my emotions as they come instead of fighting them. It is okay to be angry and sad sometimes. Denying those emotions or trying to push them away does nothing but worsen them.

This is a great place to share, vent and laugh. Welcome, again to our community - Take care.

Dianna

By Patybluetx
Posted November 5, 2008 at 10:39 am
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Hi Dee Marie!
Welcome to this wonderful group, you will find a lot of support here. I have only been here a few months and already feel close to many of these wonderful and wise women. I too came in while I was in a deep depression and talking it out, and enrolling in therapy (highly recommend it!) and now I've gotten rid of my panic attacks (yay!) and I attribute that a lot to this group and all the love and support I've gotten here.

"Does this sound familiar to anyone?" Yes, I think all of us have been turned away from lifesaving treatement because we're women and we have hormones, and feelings :- /. It cost me my daughter, and it has made many women independance, and self reliance and that has to change...unfortunately, I'm still working on how we can change that but I'm sure there's got to be a way!

I look forward to getting to know you more :)
Martha

By tonyam
Posted November 5, 2008 at 11:38 am
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Hi Dee Marie,

Welcome to our group! I too have Prinzmetal Angina. You'll find several wonderful women here who also have this disease. I can't express enough how much this forum and these women have helped me through this year.

Me - I was stupid and didn't seek medical attention the day my "cardiac event" (heart attack) happened. Rather, since it stopped, I convinced myself I was fine and suffered with the pain and BP fluctuations for 2 weeks after. Once I went for help, I too had problems with the medical world, told to take Tums or Pepcid after my cath was normal. But after pushing and pushing I finally find the right team.

When I was in the hospital in August for seizures (due to my Hemiplegic Migraines, new disease I have), the doctors first dismissed it as "pseudo".

How easily we are dismissed due to our gender. It's such a shame.

Now though I've learned to hear those trigger words that make me just get up and fire that doctor. It's my body and my life. I decide if I accept what they are telling me. And if No, move on.

It happened to my mother too when her OB/GYN dismissed a lump that was cancer. Too many stories....

Welcome to our group! Post here often. This is a very active site.

Have a great day, Tonya

By MoonFairy13
Posted November 5, 2008 at 12:08 pm
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Oh what a blessing to wake up today and find that friends had already written! Yes, it does cheer up your mood greatly, it does feel to me as though a sister/s have contacted me, checking in to say, "How are you today hun?" And my reply would be, "Oh much better since I have heard from you, thanks!"

Henriette, I had long forgotten about Facebook, I must get back to that, I hadn't heard from anyone when I first got on there and when my computer crashed, I lost all my information to it. Thanks for reminding me hun. I will try to get back to it somehow.

Lynn, Thanks for welcoming me home! I will get all the information put on the forum about the study I am in. You are SO right about the need for women in studies, we ARE made differently inside and have much smaller arteries. Thanks Sis.

Wow Dianna, when I first looked at your little picture I thought, HEY, how did she get my Puppy on there?? I have a chihuahua that looks so much like yours except mine has long hair. She is the love of my life and my best companion. I can relate so much to you saying that you run between the rabbit and turtle. I too am that way, if I push my body cleaning house, running to the grocery, working out in the yard, then I pay for it for sometimes days. I still haven't been able to understand that, just have to accept it and do the best I can. I suppose that is what has been my saving grace, realizing that I had to take a new path and start my new journey. That's what led me here to my sisterhearts.

Martha, I would not wish what I feel on anyone but as with you, I'm sure it helps to know there are others out there who suffer, many times silently. I have found that it is the silence that kills the soul, talking heals.

Oh my, I'm not not alone, I have sisters back in my life and I AM HOME!

Thank you and God bless each of you! Wish you lived closer, I would love to have you over for some pie and coffee. : )

Dee Marie

By MoonFairy13
Posted November 5, 2008 at 12:52 pm
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Hi Tonya,

So pleased to meet you and thank you for taking the time to write. Amazing how each persons story seems to be a part of our own, guess that's what will make those on here so close, there is a bond. I too was having terrible headaches and had one very short seizure and was put on 1000mg of Depakote.

You are SO right about having to take your health into your own hands. I got so very discouraged when I was trying to tell the doctors what was wrong and was sent home with the same as you, Tums or something for my stomach or nerves. I know the hard part is that when you are feeling your sickest and weakest, it is hard to stand up straight and say, "Hey Doc, this is my life and my body you are dismissing" but that is exactly what we must do. A good friend of mine always said, You must be the change you want to see in the world, well I think we must also be the doctor we want to treat us, they will sometimes only be as detailed as we are. Know your body.
So glad you have written Sis, please check back often.
Love Dee Marie

By Rose
Posted November 5, 2008 at 2:23 pm
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Dear Dee Marie,

Welcome and I hope your journey will be easier because you have found us. Many of us have had problems with with friends or family not being as supportive as we wish they would be but we have each other.

I will look forward to hearing more from you.

Warm Regards,

Rose

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