This topic contains 28 replies, has 5 voices, and was last updated by  Jen Cueva 4 months, 1 week ago.

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  • #16864
     Randolph Reynolds 
    Participant

    I thought I would just pop in and comment on what I discovered when I told some of my friends about this disease. Even I have been shaken up by the realization that my condition is getting worse. It seems that one doctor has pretty much told me I was headed for the end. I haven’t been able to express myself about this but it certainly has up set the people I told. On the positive side I didn’t realize how many people really cared about me. I am having more difficulty dealing with this that I didn’t have been before. Very tough. May God bless us all.
    Randy

  • #16866
     Brittany Foster 
    Keymaster

    I am so sorry to hear this Randolph. I am sure the doctors are doing what they can for you too! It must be so difficult to present the reality of your illness and mortality to your friends and family. I have an upcoming surgery that is high risk for me and a major surgery and have had to think about my mortality and discuss the possibilities and risks of surgery with my family and friends and it is not an easy discussion. It certainly does open your eyes up to the impact that you can make on people and the care that people have. I have learned that people either rally around you in support or they leave and turn away. The ones that leave always seem to cut the deepest but the ones that stick around are the ones worth keeping. Cherish those friends and family members and the times you have with one another.

  • #16892
     Jen Cueva 
    Participant

    Hi Randolph,
    I am sorry to hear this. I think Brittany offered some great advice and comfort as it’s very difficult to even think of our own mortality and even harder for our loved ones to process. I think the ones that leave just can’t deal either and we just have to enjoy the time we do have and the ones that are around us. For some, it may not be much, but remember we are always here as well and understand.

    • #16903
       Brittany Foster 
      Keymaster

      So true, Jen. For many of our members this forum and our online community is a good place for support and to receive feedback from people who understand. I really like getting caregiver perspective on topics too. Someome who could also help you and your family to process this is a social worker. I have a great one that I have been going to for over 8 years now and she knows me well. She also had helped me explain difficult things (not necessarily PH related) to my family members and has had some family members in therapy sessions with me to help guide the conversation and help fill in the gaps. Sometimes something like this and a third ear to listen and help facilitate difficult discussions is really helpful.

      • #16912
         Jen Cueva 
        Participant

        Brittany,
        I agree, the perspectives of the caregivers are helpful . I also enjoy reading from the Male perspective as I’ve read several topics and find both interesting and helpful!

        I never thought about the Social Worker but that’s a great resource! I’ve only seen them when I’ve been in the hospital and usually tell them I’m good. Thanks for that suggestion ! I know many see Therapists , so I just bypassed the Social Worker.

      • #16917
         Brittany Foster 
        Keymaster

        Jen,
        Mine is a “therapist” I guess but her title is LICSW which stands for Licensed independent clinical social worker. But it is a talk therapy based approach. But mine does help a lot with medical things. Even asking your hospital you go to for referrals to social workers that are affiliated with the hospital or PH clinic you go to. Sometimes they have their own social workers that work with them or in similar departments that may see patients there or outside the hospital in a practice.

      • #16922
         Jen Cueva 
        Participant

        Thanks for the information, Brittany!
        I don’t know why it never occurred to me to look for a Social Worker outside the hospital. I have a friend who I used to work with and she’s a LCSW, she works in a variety of settings . Great tip and reminder ! I’m assuming your insurance covers these visits as well, correct ? I know our insurance does have some coverage but I haven’t really looked too much into it. I may now.

      • #16931
         Brittany Foster 
        Keymaster

        Yes, my insurance does cover it. Although I know she always needs to send updated forms and I need to renew the authorization forms every year when the insurance renews. It’s a pain in the butt especially if you end up needing visits weekly or more than once a week (lately I have been trying to go a couple times a week especially with everything that has been going on). But it is worth looking into. I know that once they see you or you are seen by a psychiatrist first and have some type of “diagnosis” documented, like for me it is PTSD and anxiety disorder then the insurance should be able to cover it. I think they need some type of diagnosis code though.

  • #16938
     Jen Cueva 
    Participant

    Thanks for the information, Brittany!

    I’m sure with all you’ve been dealing with lately , the extra visits are needed and productive. You have a lot on your plate at once snd I applaud you for getting the extra help when you need it ,

    I definitely want to check on this. I, too , have Generalized Anxiety , so I think they should cover it.i will be looking more into it. This is where you go in office correct, not online or the phone?

    • #16941
       Brittany Foster 
      Keymaster

      Correct, I go see her in the office. Sometimes we set up phone calls for when I can’t see her in person like when I’m in the hospital or something. But I really do prefer actually seeing her in person. I think face to face is so much more effective. But I can understand why some people would prefer phone calls or even a new service they have now where you “text” to a therapist. I text mine sometimes but usually just when I’m panicked or have to text her something so I remember to talk about it in the next visit.

  • #16944
     Jen Cueva 
    Participant

    Thanks so much Brittany!
    I’ve looked up a few and I’m going to call and see exactly what my insurance will cover before I try and make an appointment .

    I think I would do better in person as well, but I have seen the commercials fir the Therapy Apps , etc.. I think it’s just that mental health is much more talked about lately. This is a good thing, but I know there’s still work to be dine as far as recognizing and getting people more comfortable discussing mental health. You are a huge part of this on the forums here as well as in your Blog posts!

    • #16953
       Brittany Foster 
      Keymaster

      Thank you, Jen.
      I definitely try to be honest with many of my mental health struggles because I know others can relate and many just aren’t sure how to express it. It is hard when it is still such a stigmatized topic of conversation. Especially when talking about prescription medications that people have to take for various things. I know that natural remedies are a great supplement but for someone with serious medical conditions, that just can’t be the ONLY treatment option for us. I wish there wasn’t as much “pill shaming” in the world for any kind of medications people have to take, especially when it comes to medications for our mental well being.

      • #16971
         Jen Cueva 
        Participant

        So true, Brittany!
        Just as people are “shamed “ for their bodies, they are shamed fir taking these prescription meds. I never took any of these meds until the last few years. The medical issues are what cause my anxiety, hence the reason I need meds. I tried meditation as well as other natural remedies first . I agree, often meds are needed and we shouldn’t have to feel embarrassed or be shamed for taking these meds.

        I do think we are talking more about mental health now but still feel like there is so much education and awareness needed on this. Self care and mental wellness are just as important as physical wellness, if not more so.

      • #16977
         Brittany Foster 
        Keymaster

        I agree, Jen.
        Especially in the chronic illness community, this is such an important topic to discuss and be open about. I truly feel like a large majority of my anxiety stems from medical conditions too. My coping mechanisms of “numbing myself” or “disassociating” myself from trauma situations is definitely part of my PTSD from hospitals and surgeries. It’s also one of my “coping strategies” that works for me so it’s like a symptom of PTSD but also works FOR me too. Do you know what I mean? Almost like how anxiety can help give people energy. Without my anxiety I feel like I’d be a slug hahaha.

  • #16983
     Jen Cueva 
    Participant

    Wow, crazy you mention the numbing part and disassociation for you!

    But, I think we tend to find what works for us and often this CAN be a coping mechanism as well as a part of our anxiety, too! For myself, I think it depends on the day and what’s going on mentally and physically at that moment as to where I classify this . Does this make any sense at all to you?

    • #16996
       Brittany Foster 
      Keymaster

      Jen,
      Yes that makes total sense. Sometimes I recognize it as a form of PTSD (like when I forget every single word a doctor said to me or can’t respond to questions when I’m in this state. With the disassociation sometimes it helps me get through procedures or getting something done that is uncomfortable and I need to manage the pain, this works as a good coping mechanism for me in this situation.

  • #17008
     Jen Cueva 
    Participant

    Thanks Brittany!
    I know at times we think that we are the only ones dealing with these struggles, but honestly so many others are as well. This is why it’s so helpful for the forums as we can relate to others and know , we are not alone and also offer some hope.

  • #17012
     Randolph Reynolds 
    Participant

    Brittany and Jen.
    You both reinforced what I have encountered. My approach to social interactions continues to be as normal as I can make it. The person who is having to weather this business of my mortality the most is my wife. I attend a very supportive church but most people, including friends, just look at me as if I were the same Randy as before except I have to drag oxygen with me. So far I keep myself functioning but it is a challenge.
    Brittany I pray that your surgery will be successful and it will give you hope. Right now enduring the emotional and physical aggravations must be very hard. I appreciate you running these dialogue sessions. God bless you both.

    Randy

    • #17026
       Jen Cueva 
      Participant

      Thanks for your kind words, Randolph! I think that’s good as I try and make this as normal as I can as well. Often, as you well know, we make even more adjustments. I tend to stay home and not have others visit if I’m feeling bad , so when I’m out I try hard to look good. Like yourself, my hubby is the one who sees me at my best and my worst. Often I apologize to him for things I can’t do or plans we cancel due to my illnesses. He always is supportive and tells me not to apologize but I still feel bad. It sounds like your church offers support and I’m sure that helps your wife as well.

      Yes, trying to act “ normal “ and functioning daily can often be challenging. It takes continuous work. Blessings to you and your wife as well.

      • #17033
         Brittany Foster 
        Keymaster

        Jen,
        It seems like, from all your posts, that you have a very supportive relationship with your husband. My boyfriend has been through all of this with me from the beginning so it isn’t something I ever had to awkwardly bring up while dating someone or getting into a relationship with someone. I think going through it all together has made that part of the relationship and the understanding easier.

      • #17045
         Jen Cueva 
        Participant

        Thanks Brittany, he is very supportive! I am glad your boyfriend is so supportive too. I do agree that if I would have met my husband prior and he hadn’t gone through this with me, it would have even been tougher. I do know that these struggles can be rough on any relationship but I feel it’s made our relationship even stronger.

        I couldn’t imagine being in the dating spectrum , but I have heard from many PHriends that are and have and some have good experiences and others not so good.

      • #17052
         Brittany Foster 
        Keymaster

        I guess for the ones that have had “bad experiences” with dating, it certainly weens out the ones that they don’t need in their life and the ones that wouldn’t have lasted long in a relationship anyways ! Now I feel like, who wants to waste their time with someone who isn’t going to love you at your best AND your worst anyways? At least they can see our worst from the beginning and if THEY choose to leave, that’s on them! It took me awhile to realize that if someone leaves my life, that is not a fault of my own.

      • #17057
         Jen Cueva 
        Participant

        So true Brittany! I definitely would not just want someone around to support me at my best, they need to love me on my worst days , too! AsMarilyn Monroe always says, “ I’m selfish, impatient, and a little insecure. I’m out of control and at times hard to handle.But if you can’t handle me at my worst, then you sure as [email protected]@dontdeserve me at my best “.

        Yes, those that do have issues dating, I do think it helps weed the bad ones out. I feel the same thing with so called friends who once I got sick left, they weren’t true friends to begin with too. It took awhile and I still remind myself constantly that ors nit my fault! You are such a smart young lady !

    • #17032
       Brittany Foster 
      Keymaster

      Thank you so much Randy,
      It’s great to have the support of everyone here on this forum. I know that church can be a great support for many of our members too. I always love when my friend group still treats me the same with or without the oxygen. The more I’m with my friends, the more they are able to see how I manage my condition and how I use a lot of humor and sarcasm to get by. They pick up on how I react to my illness and mimic my actions and reactions to things. It helps a lot when I’m treated as “myself” and not some type of anomaly.

  • #17111
     Jimi Mcintosh 
    Participant

    Being terminally ill is worse than having Mumps, Measles, Chicken-Pox.
    Family and friends, try to avoid you
    And talking about it. Doctors will
    Avoid talking about your morality and
    Provide you their best “guess-to-mate”.
    Keep your spirits high and live each day to its fullest, I was given 6 months, and I refuse to give up. I was told that I had to many issues to be considered for a transplant. I appreciated the doctor honesty, and it caused me to look for other options.

    Advocate for yourself, read factual information, treat your illness on a need to know basis, your true friends and family will be there. This forum is a great place to talk about your fears, cause we are all on the same highway in life. I truly believe that like with Lupus, a life substaining change is just around the corner

  • #17118
     Randolph Reynolds 
    Participant

    Jimi,
    I grieve for you yet what you say is brutally correct. The doctor I see reacts the same way. Although I have been given no definitive date I try to treat living as an experience as best I can. My support group tells me they are glad to see me when I arrive, oxygen tank in trail. It is terribly hard on my wife who has her own physical issues. I meet once a week with a friend who has experience with people with terminal diseases. My response to your post is to identify with it and include you in my prayers. I have long ago quit asking ‘why’ but now trying to surrender my fears to God. Bless you and thank you for your thoughts.

    Randy

    • #17127
       Colleen Steele 
      Keymaster

      Hearing difficult news from your doctor is hard enough but then you have the emotional challenge of explaining what you have been told to family and friends. My son had pediatric PH so it fell on my shoulders as caregiver to be his voice. We have been fortunate to have amazing support but there have been a few painful and shocking experiences of people we never expected to turn away, do just that. In the long run what we ended up with was a solid, loving, supportive group of people who we never have had to watch our words or fear expressing our feelings around. That’s when the healing from losing others takes place.

      Randy, Jimi and Brittany especially, it sounds like you have a lot you are dealing with emotionally and physically right now but what stands out them most is your perseverance! What I have learned from my son is that his strength has always been supported by someone and often that person was me, his mother. Randy, I’m sure your wife worries a great deal about you but as it is with me and my son, there are emotions between us stronger than the worry and that is love! My thoughts are with you both.

    • #17137
       Jen Cueva 
      Participant

      JImi, Randy, Brittany and Colleen, you all have some tough roads ahead and definitely already been through some. I, too find that those who have stayed in my life are supportive, loving, and caring. At this point in my life, that’s what I need as I’m sure y’all agree, it doesn’t mean it doesn’t hurt that others I would have never thought left but I know it’s best and I can’t dwell on that.

      I was told in 2005, that I was giving a “ death sentence “ and would be gone in 3-5 years, thankfully there are doctors now that know so much more and research for all diseases continue to improve daily . It’s not easy when your doctors give you a poor prognosis but we can’t always control that, we can control how we react to that . I tend to often hibernate fir a bit, then I like to keep busy. I think when I’m focused more on others and trying to help them, I do t have time to dwell on the negatives. Don’t get me wrong, I have my bad days and little pity parties but I feel it, then I move on.

      Also, a great support system is a lifesaver! So shout out to all of you like Colleen who is such a loving and caring caregiver!

  • #17130
     Randolph Reynolds 
    Participant

    Thank you Colleen. Change and ending of relationships is exacerbated by the change in this place where I live. Sometimes I realize I have out lived my era. It goes with the complete change in this once small town we moved to twenty years ago. We all stand as tall as we can for as long as we can.

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