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    • #28512
      Jen Cueva
      Keymaster

      2020 was such a unique year for most of us. Now that we are through the holidays, we want to check in and see how your mental health is. Often already, those with chronic illness feel left out, or maybe you can’t make it to a certain event that you usually do.

      Are you dealing with anxiety at this time? If not, what about the last few weeks? Think back and see any patterns that could have led to anxiety and/or depression.

      I am struggling a bit because my recovery is slower than I hoped for. I keep reminding myself that I am making improvements, even if it is baby steps. I had anxiety before, and that continues.

      What are y’all feeling, and how can we help?

    • #28518
      Colleen Steele
      Keymaster

      @jenc I know you haven’t started the year where you wanted to be health wise, but when you think about what you have been through you have made great strides. Don’t be hard on yourself. Those baby steps add up and before you know it you will notice yourself reaching milestones.

      Personally I’m stressed about the Covid vaccine. I’ve always been pro-vaccination but I admit that I’m nervous about this one. I more worried about Cullen and making the decision what is best for him. I’m really 50-50 on this right now. So, that’s the stress I’ve carried into 2021. Anyone else?

    • #28527
      Jen Cueva
      Keymaster

      @colleensteele, I am grateful for your continued support. I am learning to offer myself grace; it has been a struggle. But, mentally, I am doing better on most days with the extra limitations, most days. You are right, and the baby steps lead to the milestones. I am about to share one on weekly wins.

      You are not alone, Colleen, in regards to the vaccination. I am pretty much 50/50 with you. There are so many uncertainties that come with it, still. I know it must be difficult as Cullen will make his own opinion. Would he share his thoughts yet on the vaccine? I am sending you big hugs.

    • #28540
      Robin Webster
      Participant

      My mental health? A bit shaky. I lost my job 3 days before Christmas. Actually, my mother, my daughter and I ALL lost our jobs at the same moment. They are shutting down the non-profit organization where we worked. I’d been the director there 14 years. It was sudden and without notice or discussion. It was also handled very disrespectfully by the president of our board of directors. He refused to answer any questions, said “You know the golden rule. He who has the gold makes the rules,” got in his car and drove away, leaving us standing in my driveway in our masks in the freezing cold not knowing what our future holds. So, I have applied for unemployment but am now facing the reality of whether or not I’d better try to get disability. It seems overwhelming to think about, let alone do, and everyone just makes comments that make it sound nearly impossible. Also, on New Year’s Day I diagnosed my husband with a DVT and sent him to the ER (even though I’ve avoided any medical in-person contact myself — other than a bloodwork a few times — due to fear of Covid exposure in a hospital.) I was right, so now he’s on blood thinner. But thank goodness I caught it. I can handle whatever is happening with me, but I can’t handle anything happening to him. I just took a week of prednisone for a horrible gout attack. I don’t like the way prednisone makes me feel, so I’m glad that’s over. I just started antibiotic drops for an eye infection. I now have stage 3b kidney disease on top of pulmonary hypertension and primary biliary cholangitis (etc., etc., etc.) All my docs have urged me to stay away from everyone and everything since March, but now my heart doc wants me to have an echo on Monday. I’m nauseated just thinking of walking into a hospital. Whew. Sorry. Guess I had a lot more to vent about than I thought. I have been thinking of everyone in this group and hoping everyone is ok. I’m sorry but I tend to drift in and out of being here, depending on whether or not I’m holding myself together.

      • #28543
        Colleen Steele
        Keymaster

        @robin-webster oh no! I am so, so sorry to hear that you, your mother and daughter have lost your jobs! I know how much that job meant to you. The president of the board sounds colder than the weather. I can’t believe he said what he did!

        You have a lot on your shoulders right now so I’m glad you decided to share so that we can support you. Thank God you caught the DVT. That is a strong example of the importance of going with our gut and accumulated knowledge. How is your husband doing?

        I don’t have experience with unemployment or disability to provide advice. You do have a lot going on with your health so I guess the question to reflect on is, “Do you feel up to looking for a job and going back to work,” or, “Is it time to rest?” I don’t know what your financial situation is but of course that is something to consider as well. What pays better, disability or unemployment. My heart goes out to you. This is not a nice way to start the new year, but who knows, maybe this will turn out to be for the best. I always cringe when my dad says, “Everything happens for a reason,” but you know, it seems like sometimes it does.

        • #28563
          Robin Webster
          Participant

          Colleen,
          Yes, valid points. The past year has taught me it is “time to rest.” But as you mention, that often is a financial issue, and of course it is for me. I like to eat, buy my medicine, pay my co-pay for video doctor visits, and have a roof over my head and a warm, dry place to sleep, so … it begs the question can I “afford” to respect the fact that I am this ill? I guess I can’t.

      • #28553
        Jen Cueva
        Keymaster

        Hi @robin-webster, I am sorry to hear about you and your family losing your jobs at once. I know how much you enjoyed it and had been there for years. This must have been a shocker.

        Then your hubby with the DVT. I am so happy that you caught it fast. How is he doing now?

        Yes, you often pop in and out, but we enjoy you when you do pop in. I am happy that you decided to share so we can offer you support. Please do not hesitate to reach out to us; that is why we are here.

        As far as disability, I was approved the first time. I made a journal with my symptoms, which helped them see how my health issues affected my life and created limitations. I am sharing a link to a post that you may find helpful.

        I am sending you big hugs from Texas.

    • #28547
      Liz Reyes
      Participant

      Prayers to all. My mental health is frayed . Newly diagnosed , found hypothyroidism also . I have a double cath thursday . In middle of divorce .Trying for disability ( again was on it for my back till $dispute with Fed ). Severe chronic pain for 21 yrs worsening recently ..car trouble .. Filthy house . uuuhhhggg.

      • #28549
        Colleen Steele
        Keymaster

        @la66reyes I am so sorry to hear all that you are going through. My humble suggestion is if anyone offers to help you through any of this, accept. That includes helping you get your house in order. I know this from experience. Health needs to be your priority, both physical and mental, so set pride aside and let others help however they can. Do you have anyone who has offered assistance or anyone you can ask to help? I’m also so sorry to hear that you are going through a divorce. The stress of that I’m sure is reeking havoc on your health. Has your doctor offered to help you deal with this in any way, refer you to a therapist or anxiety medication? Feel free to vent here any time. We are here for you.

      • #28554
        Jen Cueva
        Keymaster

        Hi @la66reyes, first, my apologies as I keep thinking your cath was yesterday. So, sending you big hugs and love as well as prayers for good news. I am sorry to hear that you have so much on your table. I cannot begin to imagine dealing with divorce while also just been overwhelmed with health issues.

        As Colleen mentions, please do ask and accept help. I know from experience this is easier said than done.

        I also have chronic pain and know that anything affecting my body, including stress, will increase my pain.

        Just know the house can be a mess, and the car dirty. It’s difficult for me even to write that part because I have struggled with this during my recovery, hehe.

        I agree with Colleen. Therapy may help or anxiety or depression meds. Please do come here when you need extra support. Take care of yourself.

    • #28571
      Colleen Steele
      Keymaster

      @robin-webster I completely understand and can relate to your financial concerns. It is so hard when your heart is telling you one thing but your wallet is telling you another. Can you think of any job you can do from home that you would enjoy? A lot of people are probably looking for those these days so it might be slim pickings, but it’s worth a shot.

    • #28579
      Liz Reyes
      Participant

      Hi @colleensteele , @jencueva …You guy are so sweet. Thank you for checking on me . The catheterization was done and they tell me I do NOT have PH . They think I have chronic Valley Fever . I will learn more next week. But I really wawant to thank y’all for the love , info aand support on my journey up to here..
      Thank You

      • #28580
        Colleen Steele
        Keymaster

        @la66reyes wow, that is huge news! A heart cath is the best way to diagnose PH so your doctor must feel confident that you do not have PH. I hope whatever it is that you have, Valley Fever or something else, that treatments will help and you will feel a lot better soon. Even though you do not have PH feel free to update us if you feel up to it.

      • #28592
        Jen Cueva
        Keymaster

        WOW, @la66reyes, that is a big relief. I do hope that whatever is going on is something not too serious and can be treated. AS Colleen mention, either way, please keep us updated. Take care of yourself, and don’t stop until you have answers.

    • #28599
      Jen Cueva
      Keymaster

      There are a few members who I have not seen in a while. It could be that I missed them while I was hospitalized. Nonetheless, I want to check on a few. I know this is not all, but a few that keep popping in my mind. Others feel free to chime in if I missed you.


      @dawnt
      , @jim-sparrow, @carol-alexander, @jennifer, @texas2018, @alfredjohn, @

      Just a few, how are y’all doing? I am thinking of y’all and hoping everyone is doing OK If not, let us know how we can support you.

      • #28601
        Colleen Steele
        Keymaster

        A new year and our family is growing! As I always say, I’m sorry that we are all dealing with PH but happy that we found each other through the forums. Welcome new members!

    • #28652
      Dawn
      Participant

      @jenc, so good to see you posting again. You really had quite a battle with covid, I am so glad to hear you’re doing better and giving yourself time to recover. Sorry I haven’t been posting lately, seem to get so easily side-tracked, but I’m doing well overall. The holidays were very odd, but I’m hoping this feeling of appreciating my family so much more stays with me even after covid is under control. I think it will. My brother’s wife decided she didn’t want to be married any longer, and moved out the day after Thanksgiving. Christmas was rough for him, but he’s hanging in there. My sister’s son, my nephew, emailed my sister two days before Christmas Eve and cut off all contact with her. She’s not to contact him, his wife, or the two grandkids. It’s been a tense situation for quite awhile, so she wasn’t totally blind sided, but still exceptionally tough timing on my nephew’s part. He had pretty much cut me off from contacting him last March.

      I feel almost guilty saying I’m doing well, when I know what my brother & sister are going through. We are a tough bunch, though, and I know they’ll come through with time. I’m getting better at appreciating my ‘good’ days with ph, and letting myself rest when it’s not such a good day. I feel like, even though I feel I’ve accepted my medical issues, I keep coming to new levels of acceptance. It seems to make things easier. Accept what I can’t change, keep enjoying my life as much as I can, and take it step by step.

      Wishing everyone a healthy, peaceful, fulfilling 2021!

      • #28653
        Colleen Steele
        Keymaster

        It really is good to have @jenc back, isn’t it? She contributes so much compassion to these forums that we all need.


        @dawnt
        I am so sorry to hear about all the tension happening within your family right now. My heart goes out to them but I don’t think you should feel guilty about being in a good place yourself right now. God knows you have been through a lot and you deserve this moment of inner peace. I have the feeling your family wouldn’t want their problems to bring you down. You can be supportive of them but still enjoy the good days you are having. It’s good to hear the level of positivity that you have reached. It’s a healthy way to start a new year.

    • #28720
      Jen Cueva
      Keymaster

      Thanks, @dawnt. Thanks so much for your heartfelt thoughts. I am sorry to hear about the struggles within your family. I bet they both are thankful for your support through it all. I am happy to hear that despite all of that, you are doing well. It also sounds like you are keeping busy.

      My apologies as I missed this last week. I knew I tagged you, so I went to “hunt you down” today, and here we are. I am still recovering; mostly mental and physical stamina is off. So taking one day at a time.

      Have you been able to see the horses still? Have a great new week, and I hope to hear more from you. I worry when you are gone too long.

    • #28722
      Alfred Gronroos
      Participant

      Hi from sunny AZ. Jen, so glad you survived the covid. And thanks for the caring words for us all. WOW so many have so much happening in their lives. Makes me sad. Here we are in the greatest, richest, country and our medical is not guaranteed for everyone. I am extremely lucky for the VA and TRICARE. I’ve been good altho I have very dry mouth and extreme thirst. I lost twenty pounds through no reason. Probably because my left leg edema went away – no swelling. The thirst is annoying because I end up getting up 2-3 times a nite. I just keep getting older and I believe dementia is on its way. Or it could be the wife is the one. One of us is loosing it. Maybe it is cabin fever? If you need therapy please do so it does help, it is what keeps me alive. Funny how life turned out – not what I expected. Please be careful and be safe. Al

      • #28761
        Jen Cueva
        Keymaster

        Thanks for your kind words, @alfredjohn. It means more than you know.

        It is sad; I discuss that often with others how we should have the best care here. I am thankful that you are doing well. That edema may have impacted the weight loss, but 20 pounds is concerning. Plus the increased thirst. Are you diabetic by chance? Did you let your medical team know?

        I had to crack up about dementia, blaming your wife. I bet she would blame you. I can bet it is a bit of cabin fever, hehe. I am happy that your sense of humor remains intact, despite all going on. Please check in more often, so we don’t worry.

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