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    • #16222
      Brittany Foster

      One of the hardest emotions for me to manage and to express is “anger”. Lately, I have been having a lot of this. My anxiety is getting the best of me as I am waiting for a phone call for a surgery date for my open heart surgery coming up. I know it takes a lot of planning and coordinating, but waiting even a week feels like a MONTH when I’m waiting for big news like this. Lately I have been angry with my pain, with my body, and with people not getting back to me in the time frame that I imagined.

      It has always been hard for me to allow others to see me in pain, angry, and upset. Usually this leads to me seeming hostile towards someone that I really care about and can often lead to me isolating myself in order to not cause others worry. I “hide away” because I know I am a ticking bomb when anger and frustration become too overwhelming and I don’t want to lash out at those I love the most.

      My anger is usually expressed in the form of me hiding or isolating, and it also leads to a lot of tears and crying instead of talking about how angry I am and why. I have had a lot of breakdowns recently, and I know I’m not alone with managing my frustrations this way. How do you express your anger? When you are feeling overly upset and frustrated, how do you manage it and what helps you through this?

    • #16224
      Robin Frankel

      Like you, Brittany, I tend to hide away to avoid displacing my frustration or pain onto others. It comes out as hostility and I end up apologizing a lot. Sometimes I give loved ones a warning that my Irish mother taught me: “today I’m not fit for pigs nor humans”! Which lets them know I am feeling raggedy. Humour seems to work as well, especially dark humour. I have a friend with cancer that I vent to. We call ourselves the “spinning the drain club” and tease each other about who has the worse symptoms that day, or more doctor appointments. Finding someone who is also struggling to cope helps a lot!

      • #16227
        Brittany Foster

        Hey Robin,
        I love talking to my friends who truly “get it” too. A lot of my friends use dark humor too which I am a huge fan of ! There are honestly just so many days where I just don’t feel like talking much or when I am having a physically difficult day I know that my anger and frustration may come across the wrong way. It’s good to give people some type of warning. Those who “know me” by now do know that I get like this and have been trying their best to keep me as distracted and included as possible without pushing me and also know that to not take offense when I’m being hostile for reasons that are beyond my control.

    • #16232
      Dori Herrick


      First, I want to tell you I can only imagine how much the thought of heart surgery must have you feeling fearful. I won’t tell you not to be afraid, but I will say that there are people here who have been in your position who will support you. I will definitely send you positive energy/prayers/vibes.

      Like you, I get very frustrated when my health leads to issues which I am unable to control. I used to lash out at loved ones; then struggle with the guilt afterward. Then, I began completely “disappearing inside myself”, which only resulted in more depression, anxiety, and feeling helplessly alone.

      The key is finding balance. Whenever I get overwhelmed, I allow myself to be alone and cry, but only for one day. Then, I gather myself together and funnel that energy into something proactive. Suggestions: communicate with someone who has been through a similar experience or redirect the energy into a positive outlet like reading or art.

      Also, don’t be afraid of being a pest. You are very important! When I have concerns regarding medical issues, I don’t dismiss them as unimportant. I make a list of questions, then call my Pulmonary Nurse. Even if I leave her a voicemail, she always gets back to me within 24 hours with answers. You must have somebody on your team like that. If not, most American insurance companies will provide a patient advocate nurse upon request.

      • #16235
        Brittany Foster

        Hey Dori,
        Your support with all of this and your encouragement is so helpful! I love groups like this because it allows me to vent my feelings in a safe space and I know I am surrounded by those who get it. A lot of times it is easier for me to talk about or express how I’m feeling in writing because when I go to talk about it I easily cry and go into shut down mode or get very defensive which I try not to do. Having it written down or just writing in general when I’m feeling overwhelmed and scared is very helpful and therapeutic. Sometimes I share my writing with those I trust like my family members and therapist. I enjoy reading and would love to bring out my artst side more so maybe I’ll go this weekend to the craft store and get some crafts that I can do at home or even things I could do while in the hospital too to keep me busy and still keep me motivated. Do you have favorite crafts or art projects that you enjoy?

    • #16294

      Well I have a two fold issue, maybe three fold. First I was battling obesity and depression. This was cause, more in part by my sedentary lifestyle. Which rose to prominence with my unknown PAH/CTEPH symptoms since 2009. Now without knowing I had PAH/CTEPH and that I could barely walk 20 steps. This made me basically just do nothing for almost the better half of a decade. My family thought I was just being lazy. I kept saying something is wrong but I don’t know what. In 2012 I lost my job to being absent too much. Funny thing is my symptoms got so bad I was basically narcoleptic. My work never gave me enough days to find out what was wrong with me.
      Fast forward 3 years. I haven’t worked in 3 years because I can’t seem to stop falling asleep and I am tired all the time. I go back to College and finish my Degree at ASU and eventually want to start a new path in my career. This never happens because my symptoms get worse. Then in 2017 everything falls apart as I am hospitalized for the first time in my life. 11 days in I am diagnosed with PAH. Then as the year progresses I am diagnosed with CTEPH after a health scare two months later. Now things are better health wise and I am making headway but my family do not understand what I am going through at all. They expected me with the help and meds to be healed or something. This has grown into anger for me and I can’t get my family to understand how I feel or why I feel the way I do. I feel like a burden more now than ever. I am trying my best to live well and do what my Dr.’s say. Yet, it seems like my family have no space in their lives for me and my struggles. They want me to put on a brave face and bare it on my back and and just move on. Now don’t get me wrong my family love me very much, it just seems like I have no respite from my illness, my emotions, my family nor my internal self.

      • #16296
        Brittany Foster

        I’m so sorry you have so much going on with your health and also family too. I know it can be so hard for others to understand what many of us go through and it is easy for people to put labels on us which is so unfair. I can understand how struggling with weight too and obesity would just add to the judgments and it’s unfortunate that happens because what you are experiencing every day just ISN’T normal. If you are able to write something to your family members or have your doctors even write out what it is that pulmonary hypertension does and how it impacts your health do you think they would be open to at least reading what you write and have to say? For some people, especially those that love us and care about us, it is hard to digest that there is a serious illness in the family. This leads to their own denial and often times we are the ones thinking that we have a “problem” or that we are a “burden” because they have the difficulty in accepting things for what they are. Education can be extremely helpful when advocating for yourself and letting people know what your limits are and how this disease makes you feel. You could even direct them to reputable websites for more information and ask your doctors for something to physically give your family to explain things. Even having a family member possibly go along to an appointment with you might help. It’s so important to at least have some support through all of this. Do you have friends that are helpful that you can talk to who understand or can sympathize? Know that you always have this online forum community for support and we are with you every step of the way (virtually) ! Thinking of you!

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