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Coping With the Incurable-ness of It All
@brendad53 had some troubles posting and asked me to post this for her.
I must say, almost 17 years later, I continue to have days when I struggle with these feelings. They don’t come as often, but I also think having a diagnosis and starting a treatment that will offer some relief plays a part in this.
Since my diagnosis, the amount of research and advancement that I’ve also witnessed positively impacts my mental health. My hope comes from others here and within the community, as well as from my family. Reminding myself where I started and my worst days that I survived and kept on going offers hope, too.
But yes, I, too, have days when I need to “pull up my big girl undies” – you’re not alone. This should get some interesting feedback.
Brenda writes:
I’m not diagnosed (yet) with PH, but it seems there’s a pretty reasonable chance that I will be before too long. One month to go until I meet with an alleged PH specialist. So we shall see. Meantime, as I contemplate the possibility/likelihood of getting this diagnosis, I find myself getting really sad and feeling kinda hopeless. I got inflammatory breast cancer in 2009. It’s a rare and aggressive form of breast cancer, with a poor 5-year survival rate. But it did *have* a survival rate, however poor, and I was determined to be among those who survived — without cancer — much longer than 5 years. Today, I’m 12.5 years out from diagnosis. When I contemplate having PH, however, I don’t have that same” fight until I win” feeling. It feels sad and hopeless…. The best I can hope to do is manage symptoms. I’ve been fighting/living with these symptoms, in their slow escalation, since at least 2011 or 2012. Cancer stole my feeling of health from me…and I’ve never gotten it back. PH seems primed to make sure that I never get it back. I just find myself incredibly sad about this. Can anyone here relate to the sadness? How long after your PH diagnosis did it take you to put on your big girl / big boy undies and just deal with it without feeling sad and overwhelmed? -
7 Replies
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I know just how you feel. I have had Rheumatoid Arthritis for nearly 30 years now. I am 77 now.
Inexorably, the RA became Lupus, and the Lupus became Interstitial Lung disease, and that seems now become PH.
Maximum 5 years to go. I seem to be coming to terms with dying, but the thought of suffocating tp death is what I find daunting. Silly isn’t it.
My husband was healthy until he had a thalamic stroke 18 months ago. I cannot say I want to change places with him. Nerve pain is another bag of misery.
PS Just joined this group yesterday: I feel a leetle bit better already. Thank you all for being out there, for me.
NB: I do yoga almost every day. It does help.
Indira
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@agenbyte I’m sorry you have reason to be here but we are so glad you found us. This is a safe space where you can vent, ask questions, share updates and lift us up with news about good things happening in your life.
I have RA and have been tested for Lupus many times but I’m always told I don’t have enough markers for it. I’m also a caregiver to my son. He was diagnosed with PH when he was 8 and received a heart and double-lung transplant 7 years ago.
Thank you for sharing a bit about yourself and I hope you will continue to join in the conversations.
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Hi @agenbyte, it sounds like, between your health concerns and your husband’s, you have a ton on your plate. How are you balancing this all?
I love that you mention yoga. Before my COVID bout, I did yoga several times per week. Of course, I adapted certain poses as needed. But it did help me mentally and physically. I’ve been meaning to get back in gear but dragging my feet.
The fear of suffocating to death is not silly at all. We all know how horrible it feels when we aren’t sure we will get another breath in some days, so this makes sense. You’re not alone, and I think I will start a new post about this. I will tag you in the post.
I’m grateful to hear that you’re already feeling some better with the support here. That’s why we are here.
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The fear of suffocating to death is not silly. I’ll tell you what’s silly. It’s silly that it never occurred to me that I would suffocate to death. I guess I just thought I would fade away from lack of energy. For the past three years, I spent my time being determined to make the most of everyday I had left. When I was given a drug that was only 5 years on the market, we hoped it might give me some extra time. That drug was not available at all when my dear childhood friend died of a “rare lung disease,” no one knew about. So far the worst part of this disease was waiting for the diagnosis. Once you get the dx, the treatment starts. While my life is not the same as it was before, the treatment has given me a new lease on life. One piece of advice. Don’t try to burn the candle at both ends. When we start to feel better we try to do more. If we don’t plan out our days we can end up exhausted. Rest and listen to your body. Once you are on the road, enjoy the things you can do. Live for now death will take care of itself. We are all here for you. There’s strength in our numbers.
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@mainegal very wise advice you have shared! May I ask what drug was it that was available for you that wasn’t for your friend? For my son it was IV Flolan. Is it known now what your friend had? That must have been so hard on you to lose a childhood friend. I’m so sorry you experienced that kind of loss.
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You guys in the forums are a good pick me up. Just knowing that you feel what I feel is kinda cosy.
Thank you.
For nearly 20 years I have lived in India where opening up is not acceptable. One keeps one’s bag of troubles to oneself. It’s one of the most attractive things about America where support groups are a way of life!
Having lived in Europe for 25 years which has its own virtues, I can sit back in my “wheelchair” and weigh all three.
India gave me yoga – which is the single greatest support and strength for my condition.
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Hi Indira and Colleen, Actually this seems like a good time to tell you I have a lot to tell you. First, I tell you about my friends. In the 1950s, when I was 10 my family moved to Long Island, NY. I lived in a small town called Wantagh. Today I realize, that at the time the community we lived in was like what you would call a gated community.It was called Forest City. But it had no gate. For some strange reason, the children in our community did not go to school in Wantagh. District lines put us pretty far away into the famous Levittown school district. Because we were bussed a great distance we were sort of outsiders in Levittown. Because we had a pretty long bus ride we spent more time with each other than the kids we went to school with. Because of this we were a pretty insular group. Girls and boys played together from the time we met. We continued on together through high school. Although we expanded our friendships with others, for some reason we continued to have a special bond with each other. In my group of special friends we had four girls and 4 or 5 boys. the boy I knew the longest was Ira. In High School Ira was best friends with a Levittown boy named Russ. Russ became my friend too. After high school we scattered. When reunions began to occur the Forest City kids seemed drawn to each other. It got so that we made plans to see each other and spend extended time with each other at every reunion. As we got older, the bond grew even stronger.We corresponded in between and the bond grew stronger. Shortly after our 40th reunion, where we had a fabulous time, we learned that Ira had developed Pulmonary Fibrosis. As he became more and more home bound we grew even closer. BTW the 4 girls stayed best friends all our lives. One of the girls was ill for many years and finally passed away from all the devastating consequences of Diabetes. Russ lived in Arizona. Suddenly he was gone. Ira, who remained Russ’s best friend only knew that Russ had died very quickly of a rare lung disease for which there was no treatment. We were all puzzled. Eventually, Ira’s Pulmonary Fibrous got worse and worse and eventually around 2015/16 he also passed away. In 2018 I was diagnosed with PAH. The more I learned about the disease, the more I realized that Russ must have had it also. In the few years between his passing and my diagnosis, research had blossomed. I was first put on Adcirca and a year later when my pressures had increased I was lucky enough to get put on Uptravi. As many of you know, the titration for Uptravi was brutal. But sheer determination saw me through. A few months later we learned the disease had not only stopped in its tracks, but my pressures dropped by half. Another year has gone by and my pressures stayed the same. Recently I began having some symptoms and echocardiogram results indicated that my PAH remained steady, but it looks like I now have PH as well. I was dumb struck. Both? Had anyone ever heard of that? Dosage increases of the diuretics appear to be helping that. Next week, Feb 8 I am having my third Catherization to find out for sure. We are all surprised, but very calm about it. PH and PAH are no longer the death sentence they once were. Treating both is a little complicated, but so what, its all been complicated. I’m still here and I fully intend to be sticking around. The cure is in sight. Since I am already 80 I may not be around for it but I am so grateful for all of the good things that continue to happen to me. I am repeating the words many of you already know, but this is for the newbies. You will learn to love this forum and its members. I have made wonderful friends. I am grateful.
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