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    • #25834
      Jen C
      Keymaster

      Hi members, I received a message from @traceyaustralianmigration-co-za with an update. She needs our positive thoughts, prayers, and support. She went for her clinic visit and now in ICU. She is in South Africa and recently joined us. Let’s show her our support.

      When I arrived in jhb yesterday for my appointments I was pretty sick and had oxygen sats at 76. I was immediately admitted to ICU in RHF. My pulmonologist tells me that this is going to be a prolonged admission because he needs to stabilise me and we need to finally come up with a way forward. Once I am stable, and I’m told this will take about 2 weeks, I’ll be transferred to a transplant center in jhb where I will have another right heart catheterization. This will be done by a cardiologist specializing in PH and a transplant specialist. My growing team will then assess whether or not a mitral valve repair is feasible and if so if that would then get me on the transplant list. There was also a lot of talk about getting me onto prostacyclin. I’m told that there is only 1 available in SA and my research tends to suggest Flolan the doctor wasn’t sure of the trade name. I’m told it’s only available IV so Im not sure how that is going to work in a tiny village that doesnt even have a general practitioner. Also need a blood transfusion because haemaglobin is very low. Probably contributing to my exhaustion. I’ll update if I get any news.. Cheers
      Tracey


      @traceyaustralianmigration-co-za
      . you are in my thoughts and prayers. I am hopeful that they can stabilize you and get you some much-needed relief. We will be waiting for an update when you feel up to it.

    • #25839
      V.R. Peterson
      Participant

      Tracey, I’m glad you found our helpful forums but sad you need us. You’re in my thoughts and prayers.

    • #25885
      Colleen Steele
      Keymaster

      @traceyaustralianmigration-co-za I have been thinking about you and hoping things are going ok. Remember that my son had a transplant so if you have any questions or concerns about it I would be happy to respond.

    • #26062
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, just wanted to pop in and see if you had updated us. I am thinking of you and hoping that you were able to have the angiogram done to see if that offers you some relief. We are here when you are up to update. I am sending you hugs and prayers.

    • #26074
      Colleen Steele
      Keymaster

      I am thinking of you too @traceyaustralianmigration-co-za. If you feel up to it, update us when you can.

    • #26076
      Dawn
      Participant

      Been thinking of you too, @traceyaustralianmigration-co-za. Hope you are feeling much better and that the doctors are getting things figured out some for you. Take care.

    • #26109
      Marcia D Jones
      Participant

      Hello Tracy, I will add you to my prayer. I will hope and pray everything will go well, however, you must have faith in your higher power. Be blessed.

    • #26117
      Tracey
      Participant

      Hi everyone,

      Thanks for the positive thoughts and prayers. It has been so helpful knowing that there are people out there who understand what I’m going through.

      I had a balloon inserted via angiogram on Wednesday to open up my mitral valve and thankfully that seems to have worked for my heart. Fortunately the Professor doing the procedure decided to anesthetize me because it turned out to take over 4 hours to complete the procedure.

      It seems that it has worked great for my heart with the pressure coming down to just 5 (🤗) and the pressure in my lungs has come down to the low 60s. I must say that I’m a bit disappointed that my lung pressure didn’t drop down lower and I could tell that the Professor was a bit disappointed that practically I haven’t reacted as bouyantly as he would have expected. But I’m still recovering from the anesthetic and my blood pressure is now very low so I’m sure when I’ve had a chance to properly recover I’ll feel better.

      I have been discharged because the hospital is so full of COVID they wanted to get me out of there. They wanted to send me to ICU after the procedure but all 11 ICUs had COVID patients in them.

      It has been a very good move for me to move to a top class hospital because it means I have also now had access to top class medical professionals. I have seen a rheumatologist who is also a professor and he has said that I have been misdiagnosed with lupus for 14 years. I in fact have dermatomyositis which is earmarked by the deterioration of muscles and interstatial lung disease, and requires different medication to that which I have been treated with. I wonder if I had been treated correctly whether I would be in this position with my heart and lungs now?

      The pulmonologist is the strangest man doing his rounds at 3am which is hardly conducive to normal discussion, but is a gifted doctor. He says my scans and lung function tests are so far from normal he needs time to work on a diagnosis so we will have a tele consult probably during the week. But the good news is I dont have sleep apnea – I’ve always been terrified I’d have to sleep with a CPAP so that was good news.

      The best news of course is that I am home with my fur babies so I’m very happy!!

    • #26132
      Colleen Steele
      Keymaster

      @traceyaustralianmigration-co-za I really needed to hear some good news today and you supplied it! I know things are far from perfect but at least there has been improvement and most important, you trust your new doctor’s. I feel so relieved for you! Yeah to be home with your fur babies! I’m sure they make you feel better than any medicine can!

    • #26205
      Tracey
      Participant

      Hi Everyone,

      Sorry I’ve been a bit scarce, I’ve been having a really hard time recovering. I seem to just sleep all day. I’ve got a huge problem with retained fluid to the point that it is actually hindering my movement, and my blood pressure is extremely low. I’ve been trying to have a Zoom meeting with my pulmonologist but he has missed the last 2 scheduled appointments so I’m feeling a bit distressed because I still don’t have any feedback from him as to what he thinks the problem with my lungs is. I guess I’m just going to have to keep hanging in there.

    • #26234
      Colleen Steele
      Keymaster

      Oh no @traceyaustralianmigration-co-za I am so sorry to hear about the fluid retention. That can be both scary and so uncomfortable. I feel aggravated for you that your doctor hasn’t properly responded to this concern. I assume you are on diuretics and when you finally hear from him maybe he will increase the dosages or place you on more that one kind?

      Are you still alone? Is there anyone able to risk venturing out to visit with you?

      Thank you for taking the time to update us. We think of you often and keep hoping for improved recovery.

    • #26236
      Tracey
      Participant

      Thank you @colleensteele, I am exceptionally frustrated- I left 4 messages today and still no word. As I said to my sister it’s all very fine and well having the best doctor in the country, but if he cant communicate with me his knowledge means nothing.i am on Lasix and told the cardiologist last week that the fluid is not shifting but he seems unconcerned. I’m particularly upset that I’ve been taken off my PH meds but haven’t been given any other treatment. I have no official diagnosis from the pulmonologist so dont even know what I’m dealing with. But I’m still experiencing the same severity of symptoms and dont feel that ive gained any relief from the heart procedure.

      I’m not able to be alone at all so the community has really jumped in to help, but everyone has to follow safety protocols when coming in the house. I do feel exposed but I really need the help. I keep thinking about @jenc’s article about the three hardest words. I’m terrible at asking for help so having someone here 24/7 has been really difficult.

      A friend suggested that she drive me back to johannesburg to confront the doctor but honestly, I dont think I would survive the trip at this stage.

    • #27355
      Jen Cueva
      Keymaster

      Hey @traceyaustralianmigration-co-za, it has been some time since you have posted. I wanted to see how things are going for you now. I know that after the loss of your fur baby, you were not doing well mentally. I hope that you are staying busy with the event that you were working on.

      How are you doing? Please update us when you can.

    • #27370
      Colleen Steele
      Keymaster

      I’m thinking about you too @traceyaustralianmigration-co-za. Would love to hear from you when you have the time.

    • #27373
      Tracey
      Participant

      Hi @jenc and @colleensteele, thank you so much for the concern. I’ve been wanting to post for over a week now, but have been weighing up my words because I’ve been struggling to identify how I’m feeling.

      Meg’s lose has been a massive blow for me. The most distressing part is that this stupid disease kept me away from her when she was in need, and it kept me from spending real time with her in the last 11 months. I wasn’t able to go with her to the vet, and its the first time that I’ve had to euthanize a fur baby without being there to hold them. My vet is amazing and the most caring person so I know he looked after her, but I wasn’t there for her because I didn’t have the physical strength to make a 2 hour round trip. She was the most amazing dog, and even though she was rescued from the most dire situation where she was being bred as a hunting dog, she was the most loving and affectionate soul. She was my guardian and made me feel safe, I know she would never have let someone harm me, and I guess you have to understand that in the South African context.

      We don’t particularly live in the safest country and house robberies and assault are pretty much something that happens on a regular basis. As individuals we all have to make sure that we are optimising our safety in our homes and while I’ve got two Boston Terriers who think they are the biggest, most aggressive Dobermans known to man, they don’t really pose much of a deterrent. This is where I need to weigh words, because Meg was first and foremost my baby, and secondly a good guard dog and I’m feeling pressurised to get another big dog for security. I keep looking at other rescue dogs but just can’t bring myself to make a commitment because I feel like I let Meg down, and I don’t want to do that to another dog. I’m frustrated that my condition is stopping me from being able to fully engage in play and training, and it takes a lot of work to have good dogs. My sister seems to be under the impression that I can just rescue a dog and he/she will fit straight into the pack and we’ll all live happily ever after. It just doesn’t work that way and I don’t want to put a dog in a situation where I bring them into a new environment and then I keep having to leave to go to hospital, or worse that I don’t make it and I’ve got 3 dogs needing a new owner who will care for them the same way I do.

      I guess this all feeds into my underlying feeling of uncertainty. I’m heading into 7 weeks without a hospitalisation which is the longest I’ve gone at home for the last 11 months. I monitor myself constantly and am just so scared of things getting out of control, I don’t think I can handle having to go to hospital again for a very long time. Having said this I have made an agreement with myself that I will live every day as happily and to the best of my ability as I can, and I have been having some really good days. But I’m constantly aware of how tenuous my situation is. I was in Johannesburg last week to see my cardiologist and pulmonologist and they are both happy that I seem to have stabilised for now, but no one is able to tell me where to from here, or how long I can expect this to last. I discussed the various medications that I see people on Facebook support groups using, and they are just not available in South Africa because there isn’t a high enough demand, and coupled with this the health insurance is unlikely to pay to specially import meds. So I feel like I’m not receiving the optimum treatment and that leaves me wondering if I now fall into the category of only having 3 – 5 years of life with untreated PH?

      I’m a troubleshooter and a problem solver, it forms part of my job to be able to find solutions and answers for people but I can’t find the solutions for myself. If you have a problem, I’m a good person to talk to because I can logically see what your solutions are and give you a plan to solve the problem. Heck even my therapist asks me for advice sometimes (I love her to bits and we’ve have been seeing each other for 8 years). Yet I’m not able to get answers to my own questions, and the answers that I do have are simply not an option. But I’m not the kind of person who gives up easily so I’ll keep on trying to kick PH’s butt!!!!!!


      @jenc
      , yes we did have our dance challenge, and it was so much fun! But I had to laugh, a friend who I haven’t seen for very long time saw the video of the dance and wanted to know why I wasn’t participating. I have explained to her before what my condition is, but gently reminded her that jumping around in the air and doing fancy dance moves is a little bit beyond me at the moment. Bending over to pick up dog bowls is a challenge, so I would have needed an emergency hospital helicopter on standby had I been doing the groove.

      This morning is the first time that I have been on my own since I came home. I love the people in my community so much for making sure that I’m ok, but I have to be honest I’m so glad to have my home to myself for a couple of hours. I’m going to savour this morning, and I may even walk around naked for while 😁

      Thanks again for the concern, it really does help to know that I can talk to people who really understand.

    • #27381
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, I am happy that you updated us. But, my heart aches as I read this because I can feel the love that you had with Meg. You connected and felt secure with her there with you. I am so sorry that you are feeling so emotional.

      Please offer yourself a bit of grace. You have been through so much these last few months. You are learning your body after your PH diagnosis. That in itself is challenging. It sounds like you are having guilt that you were unable to be with her. Don’t beat yourself up. I am sure that Meg felt the love from you from afar.

      Often, we have to step back to figure out our thoughts. This sounds like what you are experimenting with. Overwhelming, at times, I am sure. PH is unpredictable and not being in control and coming to terms with this is a work in progress, even after 15 years.

      I am happy that the dance challenge was something to occupy your mind. It sounds like it went well. It often hurts when friends have no clue about our situation. You are not alone, Tracey. Please know that myself and the forum members are here to support you.

      I can certainly understand how you may struggle with getting a new fur baby. Training takes time and energy, and it sounds like you need to focus on your health first. My prayers are with you as you continue to grieve the loss of Meg. That is a big punch in the gut. I”m sorry for your loss.

      Thinking of you and hoping that you are safe. It sounds like you have a supportive community. That helps so much!

      I love that you are keeping your sense of humor :D.

    • #27385
      Colleen Steele
      Keymaster

      @traceyaustralianmigration-co-za I can understand why you feel like you failed Meg. Give yourself time to grieve and while you do, reflect on the happy home that you gave her. It’s sad that you were separated during her decline but think about all the love and protection you provided her over the years. What happened is sad but not your fault. You didn’t let Meg down.

      And the time that you were away wasn’t wasted. It sounds like you are physically in a better place now and I’m so happy to hear that! I hope you can keep breaking your record for time spent out of the hospital!

      Thank you for updating us. It’s good to hear from you and like Jen, I appreciate how you have maintained your sense of humor!

      We are here for you any time you need to vent and want support.

    • #27405
      Carol Volckmann
      Participant

      Hello Tracy, I just came across your story. My heart and soul are with you. You have been and still are struggling through so many health issues and on top of that the loss of your fur child, Meg. From your discription of Meg, who was so loyal, always there to protect you and be by your side – I think she still is and her beautiful soul is still giving you the strength to move forward, hanging in there and not loosing your wonderful sense of humor. You are an incrediable woman.

      Has your Pulmonologist and/or Cardiologist suggested meds that are available in SA?

      Keeping you in my thoughts and prayers and sending gentle hugs from WA.
      Carol

    • #27930
      Tracey
      Participant

      Hi All,

      Ok update on my life. I’m now 2 months and 12 days out of hospital, and despite having had bronchitis for the last 2 weeks I’m doing ok. I was pretty convinced I had Covid but thankfully tbat test came back negative.

      I’m struggling a lot still with fluid retention despite being on a massive dose of Lasix and Spiractin, and its a daily task to try and keep things under control. For the first time in my life I’ve been obsessed with the number on the scale and its amazing how badly my mood is affected when that number goes up. For the past few days I’ve been up and my mood is consumed with thoughts on how I can manage this and stay out of hospital. I’m trying to not have a lot of Sodium in my diet which is surprisingly easy in Dullstroom because we have no fast-food restaurants so I cook fresh veggies and chicken breasts most days. My doctors keep going on about my weight so I’m battling with that too, and despite my best efforts I’m not shifting any weight. I know that my chances of getting on the transplant list are diminished because I’m over weight, but honestly I don’t known what else to do. It all just becomes a bit much and depressing.

      My last set of labs showed that my Pro-BNP has gone up since my last hospital stay. It was high when I came home but it has gone up so maybe thats why I’m having a problem with fluid. Carol I’m only on Tadalafil. There has been mention of IV medication and I think its Flolan, but the docs are not forthcoming with info and when I asked at my last doc visit about a month ago, I was told there are no meds available in South Africa.

      On the very bright side though, I received a phone call a few weeks ago from a local animal shelter that I supported when I was healthy asking me if I could take a 12 week old puppy. It seemed to be karma at work because just a few nights before I’d been watching the movie The Art of Racing in the Rain and the dog in that movie was Enzo. The puppy at the shelter had been named Lorenzo. So the universe did her job and now little Enzo is firmly ensconced in our home. He is a very busy, vocal little boy with a huge personality.

      I’m planning a memorial garden for all my little souls who have passed, and my mom (whose ashes have been sitting in my cupboard for 3 years- sorry Mom) with a huge space for Meg. I did have a laugh, one of the youngsters who helps me out with shopping etc told me that the first time she came into my house and saw all the urns (discretely stored on a shelf in the store room) she thought shame, this lady has lost so many people.

      I guess that’s me for now. I sure wish I could take the dogs for a walk, but maybe one day again.

    • #27932
      Carol Volckmann
      Participant

      Hi Tracey, so glad to hear from you and have your update. Very happy to hear you are out of the hospital and delighted Enzo has come into your life. It is a gift for you both! You really have been and still are struggling so much. My heart aches for you. Please keep reaching out to your doctors, remember the squeaky wheel gets the grease! Here in the States if you need financial assistance for medications there are grants you can apply for. Is there anything like that in SA? You said you are really struggling with your weight, would your doctor recommend a dietitian you could consult with? In a previous update you gave you mentioned that you are a problem solver for others. Maybe try and have a conversation with yourself or a good friend and turn the table around and listen to that problem solving self. I am not saying you can fix everything but you may be able to come up with ways to spend your energy in a positive way and use that wonderful sense of humor you have. I am sending you positive energy and prayers your coming weeks will be better. Hug that little fur child. Warm hugs.
      Carol

    • #27948
      Colleen Steele
      Keymaster

      @traceyaustralianmigration-co-za trying to lose weight when struggling with fluid retention is extremely challenging. It upsets me when doctors don’t acknowledge that! When my son was battling rejection post-transplant he was placed on a very high dose of prednisone. He looked so heavy and his doctor was constantly after him about losing weight. Guess what? Once he tapered down on the prednisone, losing weight became much easier.

      Same with weight gain from PH fluid retention. I know a girl who struggled to lose weight. When she received her transplant quickly went down 2 or 3 dress sizes. Most of her weight had been fluid.

      I’m not saying you shouldn’t make a great effort to lose weight but try not to be too hard on yourself when the scale fluctuates. Your fluid retention I’m sure is fighting your effort.

      My son was on IV Flolan for almost 6 years. He did very well on it. There is a lot to learn but it quickly become routine. If you do go on Flolan let me know if you have any questions.

      Congratulations on the new puppy! Can’t wait to hear more about your new fur baby!

    • #27954
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, I am so happy to hear from you. Although, I am sorry to hear about your struggles with fluid retention. Based on your labs, I would suggest they add another type of diuretic if that is available. I am on 3 different ones, and dosages may need to be increased just to help you through this and then they can cut it back some.

      I can certainly understand your frustrations with communication from the doctors. @colleensteele and @cdvol3gmail-com both offer some helpful tips and support. Try not to stress out too much on this, but be mindful of fluids that you eat and drink, like soups, etc as well as sodium.

      Do you have case managers there that can help you work through this and possibly have a better connection for you to your medical team?

      It does like like Enzo is coming just as you need him. I am excited to hear more about him. I know he will be rotten in no time.

      Thanks for updating and know that we are here to support you. I am sending love, hugs, and positive vibes to SA from Texas.

    • #28647
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, I wanted to check in on you and see how you are doing. I am thinking of you. Please update us when you can.

    • #28932
      Jen Cueva
      Keymaster

      Thanks, @colleensteele, you must have read my mind. I had @traceyaustralianmigration-co-za on my mind yesterday. I forgot to reach out to her. I hope and pray that she is doing OK and staying busy. But it has been a while; an update would be great. We are here for you.

    • #28951
      Tracey
      Participant

      Hi @colleensteele and @jenc, I’m so sorry I have been scarce of later. I’ve been dealing with a lot of things on a lot of different levels. Inherently I’m not a complainer and don’t like to worry people with my stuff, but I realize that going quiet on the very people who have the most genuine concern for me is not the way to do things. For this I apologise.

      I guess you’ve figured out by now that my best coping mechanism is to make things into a joke, but I’m finding it difficult to find the jokes at the moment. I’ve had a number of autoimmune issues over the last few months and several hospitalizations with central lines for meds and ICU to ensure that the added fluids for treatment don’t crash my heart.  I heard someone on TV the other day saying that counseling services need to be provided to covid patients to help them cope with the trauma of ICU and for the first time I acknowledged to myself that I have been traumatized repeatedly over the last 14 months. I had one good week in December and thought the tide might be turning but not so much.

      I am struggling with such extreme fatigue that I am so, so limited in what I can get done in a day. And the brain fog is so unreal that focusing for more than 5 minutes is impossible. Everyday I set myself the task of showering and 3 other tasks. As you know showers can be super exhausting so some days that’s all I achieve and some days I don’t even achieve that. I’m also in a remarkable amount of pain (not sure if that’s the PH or autoimmune) but its relentless and debilitating and the pain meds are doing nada – its weird because I’ve got a really high pain threshold (I walked on a broken foot for a week before seeing a doctor) so its an adjustment for me to deal with 24/7 pain. And then there’s the severe dizziness that threatens to drop me most of the time that I’m upright, whats the deal with that my BP is fine.

      A big issue is also my sister moving in to my house. She lost her job due to covid so had no choice, but she tells anyone who’ll listen that she’s looking after me. We have a pretty checkered past and I have no illusions when she finds something better or no longer gets the sympathy for being the caregiver she will bolt this joint. She really doesn’t help me with the things that I need help with, and then tries to take over the things that I can do. She’s always talking about what she’s going to do to make things better for me but then doesn’t take action.  I have never heard one person complain so consistently about being in some sort of pain, be it toe ache or headache and feeling like she’s coming down with something. And every night without fail she says “gosh I don’t know why I’m so exhausted tonight”  and flits off to bed early leaving me to get the dogs to bed and the house closed up. It actually got to the point that I thought there must be something going on here so sent her for a full panel of blood and for an ecg and echo..I was worried she had something going on like me, but she got a clean bill of health. I’m not saying she isn’t entitled to these feelings but I don’t really want to hear about them. I don’t bang on to her about how shitty I feel. Bottom line that I’ve know all my life – she’s a drama queen, I’m not. We’ll see how this pans out.

      My business partner is also being a jerk and demanding on my time. I understand that there are things I have to be involved in, but I have clearly set out to him what my condition is and that I have serious limitations at this stage.  I’ve known him for 30 years and I know how he operates – if its not happening to him, he can’t be bothered to try and understand or find out about what someone else is dealing with. His mentality is that if I’m not in hospital then I should be able to work full time. Its frustrating having to keep explain to him that I’m in heart failure, I have PH and neither are going away or getting better.

      I guess I’m feeling frustrated at the moment. Frustrated that I don’t get heard, frustrated that I’m not being acknowledged- I don’t want pity but it would help to know that my limitations and issues have been taken on board by others – and frustration that my life has been so seriously curtailed.

      Sorry for the vent but I feel comfortable to do it here. And thank you both for caring.

    • #28952
      Colleen Steele
      Keymaster

      @traceyaustralianmigration-co-za I hope you didn’t feel pressured to post. It’s just that when we don’t hear from active members for a while we get concerned. I followed your posts on FB, I think it was in December and then you went quiet there too. Not that I’m stalking you…it’s just that I noticed and got worried. Left you alone for a while because I understand that sometimes people just need time to themselves.

      You are always welcome to vent here. We might not always have solid advice but there is no limit to our understanding and compassion.

      I do believe that patients who have experienced the type of things you mentioned do experience PTSD. Except I read an article somewhere that PTSD isn’t really the correct term because when you are living with a life-threatening illness there isn’t anything post about the trauma. It doesn’t go away and that makes it so much worse.

      A sense of humor can be the best medicine but more harmful than helpful if it’s used to cover up other emotions that really need to come out. I’m so sorry that you aren’t up to joking around these days but the fact that you are acknowledging just how hard things are for you, I think shows just how strong you are too.

      It takes strength face physical and emotional challenges and it sounds to me like you are managing. You manage to set realistic goals for yourself every day and not push yourself beyond your capabilities. You recognize the differences between yourself and your sister and as frustrating as it is, you don’t waste your precious breath arguing with her. It sounds like maybe you are doing more caregiving for her than she is for you. Do you at least enjoy her company? Can you watch TV together or maybe play cards or something?

      With what little energy you have at the end of the day you are still a responsible person who takes care of her pets and the safety of everyone under your roof by locking up the house. You might not be able to work full-time but the fact that you manage to work at all is amazing to me.

      Yes, you do have limitations but from my perspective you are still a strong person who contributes a lot to this world. We appreciate you here, that’s for certain. We noticed you weren’t posting because when you do it is always informative, compassionate and yes, sometimes funny. We missed you.

    • #28958
      Jen Cueva
      Keymaster

      Hi @traceyaustralianmigration-co-za, I am so happy to see your post. We miss you when you disappear for some time and of course, then we worry.

      You are welcome to vent here anytime; that is what we are here for. We support each other.

      I am sorry for your trauma and stress. Being in the hospital ICU with COVID is still a nightmare in my head. I am still recovering as I deal with SOB, and easily fatigued. Like you, I often have to rest in the afternoons.

      I am sorry that your sister is not helping as much as she says. Like Colleen mentions, you sound like you are helping her. I hope that she is appreciative.

      You are strong and funny, too. I know when you are not joking, something is up.

      It sounds like your business partner’s lack of knowledge is not helping. Even though you say he is aware of your medical issues. I hope that you remind yourself each day of all of the little things that you do. This adds up.

      Sadly, I have a few family members who think the same. If I am not in the hospital, I am fine. It is frustrating. I am writing a column for next week that you would probably enjoy.

      I am sending you hugs and prayers from Texas.

    • #29036
      Tracey
      Participant

      @colleensteele I don’t mind if you want to stalk me….its pretty boring, but you’re welcome to 🤣. It might add to my street cred if I can say I’ve got a stalker!

      @jenc
      I read your article I think the week before last and oh my goodness you’ve been through the wringer with COVID. I’m so glad that you made it through and I pray that you keep on getting better. It is such a cruel illness and must have been terrifying to go through. But you’re one of us and clearly very strong.
      I also saw your article on the ebike…oh my word I want one. I can just see myself tearing up the streets of my little village with the dogs running alongside. What a feeling of freedom and normality that would be.
      Thanks for always being supportive, I often wish I could just pop over for a cup of coffee to talk to two warriors who understand what my life is like. @colleensteele I count you as a warrior because I can’t imagine having to go through what you’ve been through with Cullen.  One though mama.
      I’ve started doing some work with a pulmonary rehab physio so hopefully I’m going to get some of my strength back – its a lot of breathing exercises and exercises to strengthen my muscles
      So I find my days are filled with rehab, doggos, sleep and a bit of work. Oh and cooking, I love cooking when I can stand up for long enough.
      I’ll post some pics of Enzo on FB – he was so funny tonight he has been playing hard all day and just collapsed on the couch mid play with toy in mouth.
      Speaking of sleep its time for me to hit the hay.

    • #29044
      Colleen Steele
      Keymaster

      LOL @traceyaustralianmigration-co-za! Ok, I’m officially your stalker, especially if you keep posting adorable pet pictures. Enzo is adorable!

    • #29058
      Jen Cueva
      Keymaster

      Oh, @traceyaustralianmigration-co-za, you are so very kind. Your words mean a ton. I am happy to be getting back one day at a time. As far as my E-bike, I am ready to get back on it, hoping by the end of this month. We shall see. They also have some you can add little baskets on to carry your fur babies, lol.

      BTW, I loved that pic of Enzo; so cute, he was tuckered out!

      I hope that your pulmonary rehab helps. When I went after I was first diagnosed, I would come home and crash after my sessions. My PH team said that was OK, lol.

      I appreciate you so much. I am happy that you updated us. I am not on FB as often as here, lol. I love that Colleen is your official stalker, hehe.

      Big hugs from Texas-

    • #29176
      Tracey
      Participant

      Hi Guys,
      I’m feeling so incredibly frustrated and I know that this frustration is going to boil into anger and an ugly scene if I’m not careful. I have to deal with the situation with my sister and honestly I’m not sure how – she takes offense so easily that I can’t just say to her, this is what’s not working and this is what I need, without her going off pop.
      She just does not take my needs into consideration in the slightest and I really just feel as if she’s using me for free accommodation, a salary and food. She is so not mindfull that I’m struggling to believe that her intentions are anything but selfish.
      I guess I do have to provide the background here, our relationship has never been very good. She is 6 years older than me and from.the age of 12 she has just not been a part of my life in any meaningful way. My father thought the sun shone out of her and bailed her out until the day he died – she could do no wrong in his eyes.
      When my dad died in 2005 my mom fell to pieces and arrived on my doorstep one day aking if she could move in with me. I had barely just got my own life established and had just bought myself an apartment, but I loved my mother so dearly that I could not say no to her. My sister at that stage was living with me (because for the countless time she had lost her job), so she moved out into my mom’s apartment and my mom moved into my apartment. For almost 2 years my mother continued paying the rent and utilities for my sisters apartment until her money ran out. Then my sister moved to the village we now live in. I had just been diagnosed with Lupus when this all happened.
      When my mom had been living with me for 5 years she fell and broke her hip – it was one of the most devastating days of our lives. The doctor who replaced her hip botched it and after 5 months she was not able to walk yet. I took her for second opinions and she had to undergo another surgery to take out the prosthetic and correctly fit another. For months we battled to get her walking and I had a physio come to the house every day to try and get her on her feet. Eventually they told me that her inability to walk was probably psychological but to take her to a neurologist. I’m glad I did because she was diagnosed with Parkinsons which the doc said had probably been pushed into overdrive by the trauma she had suffered. Long and short, my mom was never able to walk again. She became more and more frail and needed 24/7 care, she literally could do nothing without assistance.
      In South Africa we don’t have government assistance nor does health insurance provide carers. I was lucky that I was able to work at home a lot (but the business was just starting and we were so cash strapped) and I looked after her full time in addition to my “real” job. After about 2 years of doing that I just couldn’t carry on, I was too exhausted myself. I had no choice but to employ round the clock caregivers. I begged and borrowed, but I made darn sure my mom was taken care of – it literally drove me to the brink of bankruptcy. There were times that I was so desperate I would phone my sister sobbing asking her to please help me. She didn’t, in fact during all that time I think she visited my mom 3 times. The last year of my mom’s life was horrible for her and I spent more time sleeping next to her than I did in my own bed. I remember phoning my sister and she told me to phone her when I knew for certain my mom was going to die. Huh??? How the heck was i supposed to know that! Well as it turned out I was able to tell her 3 days before my mom passed that she needed to get home. Of course she arrived for the drama (she loves drama) and tried to take over. But my mom had the last word – on 14 November 2017 she decided to wait until she and I were alone and while i was holding her hand her soul moved through me (I literally physically felt it) and she passed on. My mom always said she didn’t want a funeral, that it is just a massive waste of money – so I was grateful that I didn’t have to go through the charade of extended family members showing up when they’d done nothing to help while she was alive, it would have been hypocrisy in the extreme. I knew I couldn’t face these people without showing contempt for them, my mom was so confused about why her daughter, neices and nephews, and sisters-in-law never visited and I would have just been rude.
      The day my mom died was the saddest day of my life, but at the same time I was so grateful to her for giving me the privilege of having the amazing experience of feeling her soul. I’ve never really believed in religion but I sure believe in spirituality now. I miss her desperately most of the time, but I know her soul is with me – I feel her often when I’m in the kitchen cooking.
      I didn’t want to carry on living in the apartment so called an estate agent and turns out, I had bought in a sort of popular area at a dip in the property market and now the areas was considered one of the best places to live and the market was on a high. I decided to sell and made 10x my investment so then I really started reassessing things and realized that I didn’t want to live in Johannesburg anymore surrounded by self indulgent, entitled people. I also realized that its just me and my sister now, so made the decision to try and repair our relationship.. By May 2018 I had moved lock, stock and barrel to beautiful Dullstroom. I was warned by my therapist and many a friend that I was making a mistake thinking I could ever have a close relationship with my sister. I ignored them all. In April 2019 I was able to buy my dream home and I was able to adopt my beautiful Meg girl. I didn’t see my sister more than once a month and she did nothing to help me integrate into Dullstroom, but that’s OK I managed fine on my own, and I have loved every minute of living here.
      Then came 18 October 2019 when I was making an overnight trip to Johannesburg for IV treatment for my Lupus and things went pear-shaped. I went into respitory distress and heart failure and my overnight trip turned into 13 days in hospital and a tentative diagnosis of PH. The doc did a RHC in November to confirm and of course my sister was front and center because she could be there for something dramatic and show off to doctors. Funny that every other time I was in hospital after that it was my very good friend Greg who was with me. He talked to doctors and found out information that I was just too sick to even take in. He has been a real gem. During that time my sister would accuse me of not trying hard enough to get better and would demand that I give her timelines as to how I was going to progress so that she could plan. She basically wants me to provide her with an expiration date. We had some pretty humdinger arguments.
      Then I think my sister realized that I’d made money on my apartment and the disability insurance I had, and my business through my wonderful team is doing really well.
      It then became very evident that she was about to lose her job again, and she told me that her boyfriend person (she calls him her husband though they’re not married and see each other sporadically) had said she couldn’t move to his farm. Then she started to ingratiate herself to me and convinced herself that I need help and she would be the best person to provide that help by moving into my house, but made it clear she couldn’t pay rent or afford food etc. I was doing just fine with the support system I had in place with people who care, but she’s my sister so she moved in.
      It has really been extremely difficult and frustrating over the last few months. I’ll just give you an idea of this week. Sunday she came home from the farm where she had spent the weekend and Hannan and Marco took care of me and the dogs. All day Monday she told me that we have to make a plan to get someone to care for me when the kids go back to university, because she does have a husband she needs to spend time with and she needs a break at least every weekend, from what I’m not sure since i cook, and have a cleaning lady, and all she does is play with the dogs. Tuesday she insists on being present during physio sessions so that she can tell the physio that she’s making sure I’m doing my exercise. She is not, she keeps telling me she doesn’t think the physio should be pushing and that I should take it easy on the exercises. Later that evening we had the animal behaviorist who is trying to get her to understand how to deal with dogs (she’s never had one, i only got after.she moved out of my parents home) so I’m spending all this money on trying to make her more.comfy with the dogs. But she doesn’t take any of the advice or put into practice any of the tips given and just confuses the dogs. So Wednesday the dogs jumped up on her and she went on about how badly behaved my dogs are, so I said I’m trying but she doesn’t want to cooperate and be part of the solution. She flew off the handle and screamed at.me that she doesn’t need to live like this and she’s got better things to do, then stormed off in my car and only came back after I’d gone to bed. This meant feeding dogs on my own which I have told her repeatedly is difficult for me because it involves repeated bending over.
      Thursday night she went out for drinks and again I was left to feed dogs and get them inside. Friday night we were watching a program called First Date which basically is  show of people going to a restaurant for a first date. There was a woman on there who,.when her date went to the bathroom, told the camera she has bone cancer and she doesn’t know how to tell her date – she doesn’t want pity but he should know. She said that the inability to plan and the not knowing are the worst part – she’d been told 3 to 5 years and it’s difficult to know your time is so limited. It made me very emotional because I really felt for her and when she was telling her date I was crying at her courage. My sister told me not to be ridiculous I’m not in the same position. Roll on a peaceful Saturday. Today she said she was going out at lunch time and she’d be back to feed the dogs, well at 6pm she sent me a message to say she and her sort of partner were going to get pizza. Feeding time 7 and no sign of them so it was up to me again. Then when they arrived back I called the dogs im before they opened the gates. Enzo managed to get a sliding door open and I had just managed to get them back on the patio when idiot partner started honking horn with the gate open so the dogs bolted again right out into the wetland. I have said repeatedly that they must please not use the horn it just over excites the babies. Then he comes into my house and doesn’t even greet me, turns on my kettle, uses my coffee and starts calling my dogs imbeciles and a variety of expletives. I wanted to punch him. And my sister stands by. Then just like that they disappeared into my sisters room leaving me to get dogs in and lockup. If she would just tell me that she’s not committed I can make sure I ask other people.to help beforehand.
      I have told.her often this week that the dizziness and lightheadedness is getting worse.and there have been a number of times this week I’ve been sure I was going to pass out. Today I had to grab onto the fridge to stop from falling and then my arms started twitching and violently jerking so it became a bit difficult to hang on.
      I know that something is not right, and I know that its not a good idea to be alone but I’m feeling out of options here. I know that if I bring up any of this with her there will be an explosion of note. She likes me being sick so she can get the sympathy vote, but it must be done on her terms.
      I know how hard it is to be a caregiver.and trust me I don’t expect her not to have a life but honestly this village is so small – the pub they went to this afternoon  literally diagonally across from me and the pizza place 2 minutes away. Could she not have just popped in to feed the dogs when going from one to the other, but that idea would never occur to her. She never preempts what I need and I’m tired of asking for the same things over and over again.
      I feel disloyal and even a bit bitchy talking like this but I need it to change because I’m struggling physically and I need to know I’ve got committed help.
      Wow, you made it to this point, can’t believe you read all that. But thanks.

      • #29177
        Colleen Steele
        Keymaster

        @traceyaustralianmigration-co-za I’m in no place to tell you what to do but I will share my thoughts/suggestions based on what you shared. To put it mildly, your sister sounds toxic. I get the feeling she actually needs you more than you need her. If that is the case than I suggest setting ground rules that she has no choice but to follow, or else get out. 1) She needs to make better effort with your dogs. 2) Hold on to your car keys and provide them with expectations and rules. 3) You know your body better than she does. If she can’t provide the help you need with the respect you deserve than tell her you don’t want it. 4) If you don’t want her help then tell her in that case she isn’t providing any service and needs to start contributing to the finances. 5) I don’t think her “husband” should be welcomed in your home or even beyond your gate since he can’t follow instructions. I found that situation really concerning.

        Tracey, I know she is family and you have such a kind heart but sweetie, you need to make yourself the priority. It’s literally a matter of life or death for you. If your sister is costing you money and not helping in return then maybe you would be better off hiring a caregiver. If it’s important to you, allow your sister to stay but with ground rules and expectations. If you hire a caregiver than tell her she now has time to go out and look for a job and you expect her to do that.

        I’m sure all of this is easier said than done. If anything I offer you my sympathy and concern. I will keep the situation in my prayers. I’m so sorry you have been placed in this position on top of your health problems.

      • #29181
        Jen Cueva
        Keymaster

        Oh no, @traceyaustralianmigration-co-za, my heart aches for and with you. If you had a chance to read my column a few weeks back, I had to stop communicating with my toxic sisters and energy vampires. I allowed them to treat me in all ways until this last hospitalization. My therapist offered, like @colleensteele, that it is OK, many biological families do not get along, and that was OK. It is still ongoing progress for me.

        But, that so-called “husband” I would not allow in my home. I think that you either tell her to go elsewhere or set boundaries and stick with them.

        Your top priority is your health, and this is included physical and emotional health.

        Whatever you do, remember we are here to support you along the way. I am sending big love, hugs, and prayers your way, Tracey.

    • #29179
      Carol Volckmann
      Participant

      Hello Tracy, You are in a state that is emotionally and physically not just unhealthy but you are putting yourself in danger.
      I absolutely agree with all of Colleen’s points.

      I believe you know what you need to do and I believe you are strong enough to move ahead. Look what you have accomplished – took care of your mother, worked full time running your own business, sold and bought your homes, make arrangements to have support and the list goes on.

      Tracy you do know what you need to do and you can do it. It is NOT easy, but you have and still do cope and deal with what isn’t easy.

      I am sending you all positive energy and love. You are in my prayers and thoughts wishing you a very positive outcome. ❤

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