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    • #17636
      Colleen Steele
      Keymaster

      As the calendar flipped to June what did you see on your medical schedule that has you feeling anxious? Do you have any tests or procedures coming up this month? We are all here to give support and to listen to one another. Let us know what is going on with you in June.

    • #17645
      Brittany Foster
      Keymaster

      Hey Colleen!
      Can’t believe we are already almost done with the first week of June. I have a lot of outpatient and follow up appointments coming up. Especially post op. Next week I will make the few hour drive again to Boston children’s hospital and I’m meeting with a vascular surgeon on the 11th to repair a large A/V fistula in my arm that they discovered while I was in the hospital for my surgery. Another surgery on the horizon unfortunately. The day after that I make the drive again for post op esophogram to make sure things are moving in the right direction then meet with the surgeon to discuss post op things after that! Going to be a busy week for me but June has been starting out on the right foot already thankfully.

    • #17650
      Colleen Steele
      Keymaster

      Brittany, I know! I meant to post this topic sooner then I look and oops, it’s the 5th already! I feel tired just reading all that you are dealing with this month. It’s a lot to take on but at least it’s steps in a positive direction. I’m so glad that you have an amazing team. It sounds like it was a true blessing that you had that surgery, especially since more than expected was accomplished and discovered through it. Let us know how everything goes this month!

      • #17656
        Brittany Foster
        Keymaster

        I definitely will be sure to keep everyone posted. With the A/V connection and fistula in my arm, it puts more stress on the heart so I am pretty sure it will need a surgical fix an my cardiologist already gave me the low down on what to expect with it. It is nowhere near as invasive as my last one, but surgery is surgery and I always stay cautious with any procedure that involved being put to sleep. They are a good team though and I’m glad they will be staying on top of things and keeping a close eye on my progress.

    • #17663
      Robin Webster
      Participant

      Well, June 10 is my huge annual work event, so it’s my time of year to try to manage heavy stress on top of illnesses. I started a new yoga class last night to help me keep “self care” at the top of my list. Because the universe apparently thought having PH and breast cancer and a G.I. bleed and acute pre-renal kidney failure and a pacemaker and diabetes wasn’t enough (insert sarcastic eye roll and head shake with light laughter to be sure you don’t think I’m bitter) I now have been diagnosed with yet another incurable chronic illness. Anybody heard of PBC? I hadn’t. And it sounds so “cute,” right? Sort of like a PBJ sandwich. It isn’t cute. Primary Biliary Cholangitis. I’d been having some G.I. issues for 11 months and sought a new gastroenterologist who might be more aggressive at getting to the bottom of it. He ordered a slew of bloodwork, etc., and mentioned the test for PBC by saying, “I don’t think you have this, but let’s just rule it out.” So, yeah, THAT came back positive, even though it is totally unrelated to the issues I was having. I had a rough three days wrapping my head around this new diagnosis and then decided the pity party needed to be over. I just focused back on my work event and plowed on through. I’ve been dreading the test where they put something down your esophagus to look for varices, because I’ve had some serious issues with medical equipment in my throat … and I thought that was happening in June. Turns out they couldn’t get me scheduled until August, so I guess I get to dread that ALL SUMMER LONG. (Excuse me if I am sounding like a Debbie Downer this evening, but I think my anxiety has hit a peak.) Glad this is a group of folks who understand that and won’t judge.

      • #17669
        Colleen Steele
        Keymaster

        Whoa Robin! You really won the jackpot of health issues! Your sense of humor though surpasses all that! I am inspired by your positive approach to your health and combined work ethic. Some people when they are dealing with a serious illness need to slow down or things get worse. I tend to be that way and my son who had PH and transplant also finds that he needs to limit his activity in order to get through serious health challenges. Then there are people like you who seem to battle through the challenges better by being active. You’re even fitting in yoga to help manage your stress! Wow, good for you!

        That being said, you are dealing with an awful lot of health issues so it will be understandable if you have days that your pace is slower than others. It is understandable that you are feeling anxious about having to wait until August for an important test. You are not a Debbie Downer!

        No, I never heard of PBC but I think that and some of your other co-existing conditions will make important future topics for our “PH and Co-Existing Forum”. Let’s see if we can find others battling similar conditions as you to add to your support here.

      • #17681
        Brittany Foster
        Keymaster

        Wow Robin,
        You certainly are going through so much AND more right now. It’s like we ask the world “what else can you throw at me” and sometimes it brutally does throw us other things to deal with. I can’t believe all that you are juggling with your health yet you are still trying to make time for self care. This self care will especially be important as you wait out these next few months of summer in anticipation for all that’s to come. Are you able to plan things to look forward to this summer? That’s always something that helps me when I am really nervous about an upcoming test or surgery. Having positive things to think about helps my mind so much !

    • #17687
      Robin Webster
      Participant

      Brittany,
      I’m constantly planning things to look forward to. It’s the only way I know how to live with all the gloom and doom and still be a person who is predominantly joyful and fun-seeking. Last summer we discovered pontoon boat rental at a nearby lake, and I now fancy myself a boat captain. So there will be some trips there. It’s relaxing. We always have a Shark Week party. This summer I’m planning a McRib BBQ dinner party. I met the former CEO of McDonald’s at a work function and when I shook his hand and thanked him that the McRib exists, he emailed me the original recipe that was developed when it was created. I’m a foodie and a McRib lover (guilty pleasure!) so I just HAVE to have a bash centered on that! We do a Fourth of July party (much smaller than in years gone by, but still a celebration.) I keep a Christmas tree up all year long and have a set of decorations for it for every holiday (real or imagined!) I even decorate it with lobsters one week when I plan a lobster dinner! lol! The sign above my keyboard says “Don’t postpone joy!” and that’s pretty accurate for how I choose to live. But that alone is not enough. I think it’s very important not to wait for joyful things to happen but to schedule celebrations and bring joy into your life. Yeah, I’ve had to scale a lot of things back. I never can get the house as cleaned up as I wish I could. And sometimes I have to just make the key dishes and buy the less important side dishes to lighten my workload. But I will never, ever stop scheduling FUN! I know everyone has his or her own physical limitations, and it’s important to recognize and honor those. But fun — on whatever scale you can manage it — is what makes it so worth it to fight through everything and do what it takes to stay on the planet.

      • #17694
        Brittany Foster
        Keymaster

        Robin,
        I love your attitude ! I know your spirit and enthusiasm for life must keep you strong every single day. I am jealous of all your great themed parties you’re having. The Mcrib sounds absolutely amazing. I have to admit that I’ve never had one of those before but people rave about them. I wish I lived closer to you so I could get the invite lol. You have a lot to look forward to coming up and I’m glad you allow yourself to enjoy these moments.

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