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    • #34869
      Jen Cueva
      Keymaster

      There are many different reasons one develops PTSD. Often we neglect to think of medical trauma as PTSD. If you or your loved one has had a traumatic medical event, how do you cope?

      I’ve found talking about it and leaning on others helps me cope.

      Monday, June 27th is PTSD Awareness Day. Let’s share some ways we can cope when dealing with PTSD related to medical trauma.

    • #34917
      ky
      Participant

      Talking is number one but I also find educating myself also helps, and finding others who can relate to what I am going through is also helpful.

      Sometimes I think people forget that we actually grieve the loss of abilities or the life we thought we were going to have. And there is a whole process to grieving before you can really reach acceptance. That means its okay to cry or be angry or bargain with god.. just don’t get stuck on any specific stage, and you will reach acceptance.

      For those of us who cannot avoid our triggers: I find when I am triggered a deep breath is very helpful (5 seconds in 5 seconds out is my go to deep breath rule) counting with the breath helps me focus on my breathing; It can take several breaths before I calm down, and then I try to remind myself of what we can do, that it isn’t the end of the world, etc. lol

      Please remember it is always okay to seek help from professionals!!!! Especially if you feel hopeless/cope less, a good therapist can help you find the coping skills specifically suited to you and your situation. It doesn’t mean your crazy and it can be life changing.

      • #34923
        Jen Cueva
        Keymaster

        Hi, @kygon; thanks for sharing some excellent and helpful tips. You have so much to offer through these examples.

        Yes, education is key to anything related to our health. Mental health is no exception.

        When I worked in hospice, I saw my families and patients go through the stages of grief. I told them that everyone has to do this at their own pace. We all grieve differently, and that’s OK, too.

        I don’t know how many times I’ve yelled and screamed out loud and tried to bargain with God. I’ve also watched many do the same.

        Taking the time to focus on your breathing will help reset and regain focus. I find that also being alone with my feelings is essential. Writing about them in a journal is also therapeutic. I am a bit crazy, a crazy hot mess sometimes. Hehe

        Thank you for reminding us that it’s OK to seek professional help. I always thought I was weak when I started seeing a therapist. Now I recently started seeing a psychiatrist. But I have found that both have been extremely helpful to my overall mental health.

        I hope that you, Bryan, and the boys are doing well. How was his Uptravi titration on Friday? Any plans for the 4th?

    • #34928
      ky
      Participant

      @Jenc, we are all a hot mess these days aren’t we? No corner of earth seems calm hahaha

      Wow hospice.. that would be hard hard job, but rewarding in it’s own way as well. I am so glad your therapist and psychiatrist have been so helpful, many people just think that it wont help, waste of time or that, like you, think it makes them appear weak; This is very very incorrect my friend! Seeking help is never a sign of weakness, sometimes I think it is only the brave that will admit they need help, it’s hard to reach out and admit we can’t do it ourselves!

      Bryan’s 1200 mg 2x daily has been the hardest dose yet, I don’t know how he manages to keep working (although he is really part time lately, and we are blessed his boss is super supportive) I do see him really struggling and I am not sure how much more I can do to help with the discomfort, but I am getting a good routine down: 1 fast massage in mornings, (on days I work from home) I do longer massages before bed and always rub feet and legs when we watch tv.. I keep Tylenol and Omeprazole next to the bed and I got a heated blanket for his side … mleh ( i hate it when it creeps over on my side) hahaha

      We do have plans to go camping this weekend .. but I am WORRIED… its our first campout with this medicine, and this dose is most miserable yet, i am like how will he survive without the massage table, and the bed in the trailer is small and doesn’t incline .. I have a checklist of things, but I can’t really take the hot tub hahaha ..

      Anyway that was a ridiculously long novel; Do you and Manny have plans for your holiday weekend?

      • #34953
        Jen Cueva
        Keymaster

        Hehe, @kygon; good to know many of us are hot messes.

        I’m sorry that Bryan is having difficulty with the 1200 mcg dose of Uptravi. If this continues and he feels better at the 1000 mcg, he may want to let the PH team know. Will he be at that dosage for a week or two to offer time to see if his body can adjust?

        I know you’re doing so much to try and help him get through these challenging titrations. He must be so appreciative.

        But I can relate to keeping to his side of the bed. You sound like Manny when I use my heated blanket.

        I’m sure the camping trip will go fine. Take things slower and day to day. Can you take a few extra pillows to his head as much as possible in the camper? What do you mean you can’t carry that hot tub along? Bummer, you’re superwoman; you got this!

        It sounds like you have your ongoing list of things to carry. That camper will be stocked for all and any need he has. Maybe you can do simple leg massages in the bed at night and in the morning when y’all wake up. However, that one would lure me back to sleep, hehe.

        Is he eating some fat with the medication? I know that helps with absorption. Just enjoy your time and do what you can while camping. You never know. He may surprise you. I bet he’s looking forward to this trip but a bit anxious himself. Does he mention that?

        We were invited to a party but are unsure if we are going yet. We were both sick last week, so we may just do our own thing and adventure at the beach. I have wanted to visit the quaint winery town of Julian nearby, but this weekend, it will be chaotic.

    • #34998
      Gayle Ward
      Participant

      I was on a ventilator for a week at the UW Medical Center . Woke up very confused and afraid. Every time I go to the medical center I get shaky and very anxious.  My Physician told me it was he thought I had PTSD  which just knowing that helped me deal with it.  Now when I go in for test my sister comes with me and we plan to go for coffee or lunch afterwards. Her support makes all the difference

      • #35007
        Jen Cueva
        Keymaster

        Hi @gward, thanks for sharing your experience with a ventilator and PTSD. I’m so happy that your sister comes along with you for support and coffee or lunch dates. So many of us have PTSD and never think about it until we end up in a place or situation which reminds us of that experience.

        I hope that you’re doing well this week.

    • #34999
      Colleen Steele
      Keymaster

      Thank you for sharing, @jenc, @kygon @gward !

      Cullen is working towards his BA in Psychology and his plan is to either become a therapist or go into social work. He is in his 2nd year and finding himself drawn to the topic of PTSD, so much so he is thinking of focusing on that as he furthers his education.

      What draws him to it is how PTSD and it’s many forms is still misunderstood. Depending on the triggers people experience it in different ways and it needs to be treated accordingly.

      Anyway, thanks for bringing up this important topic Jen.

      As a caregiver I have been aware that I have some PTSD going on but perhaps more than I realized. A friend recently suggested that my insomnia might be a form of PTSD, something I had not considered.

      What I do recognize is certain sounds make me clench my fists and raises my heart rate. I’m trying to teach myself to relax my body and concentrate on my breathing when that happens.

      • #35008
        Jen Cueva
        Keymaster

        WTG, Cullen! He will do so well in psychology. Tell him I’ll be an experimental patient if he needs one. Hehe.

        He is correct; so many different forms of PTSD out there, and it’s so under-researched and acknowledged, even in the overall medical world.

        Like you, I tend to react to certain noises, too. If I’m in a medical center and hear specific beeps, it happens to me.

        Thanks so much for sharing.

    • #35003
      ky
      Participant

      @Colleensteel, That is so fantastic that your son is so interested in psychology! The entire world is in a type of mental health crisis it seems and there needs to be much more help out there, wow what a great thing that his is working on his BA with everything else he has been through, you must be one proud mamma! I bet your insomnia has a lot to do with everything you have been through and PTSD would be a real possibility! Have you talked to your dr about something to help with that? After we lost Kay my insomnia was so bad I was fumbling around like a drunk woman all day in a fog; I finally asked my dr for something to help with my evening panic and maybe an occasional day time panic, and my dr gave me minimum dose of hydroxyzine, it is non addictive and helps quiet the mind and it really helps me fall asleep quite well. I read up on it and it was originally given to patients in hospitals who couldn’t sleep to speed up recovery. I haven’t had to take it during the day as I have learned to self calm and breath past the panic hahaha


      @JenC
      I hope you are feeling better! We survived, (and we had a wonderful time, or I did), Bry struggled a bit and took a lot of naps and of coarse I did what I could with massages and yes our trailer was stacked with pillows lol.  Bryan said the hardest part was when our neighbors nearly smoked us out trying to burn wet wood .. we almost left but my son went to their camp and explained the situation and they put out their smoky fire… The elevation was a bit higher than we thought as well but Bryan handled it okay ish but was unable to take very long walks like he wanted. However it was beautiful campsite with great views. And yes we are contacting his team today to discuss the dosage and stopping titration for a spell, I really want him to also reduce his morning dose back to 1000 because he just feels plain awful all the time, but he doesn’t want to “go backwards” and it has taken a lot of coaxing to get him to finally agree to push off this weeks increase, but honestly it sounds like many people do that and some don’t even need the full dose, I am really hoping they will schedule some tests to see if we can just hang out here for a while … I was reading something and found that some people are even on lower doses like 800 to 1000 mg for a year before going up. It just depends on how responsive your body is I guess. Crossing fingers that his team will know what we should do and have suggestions of their own because I almost sound like the anti uptravi committee lately hahaha I just hate seeing him so miserable!

      Sending love, light and prayers to everyone!

    • #35009
      Jen Cueva
      Keymaster

      Hi @kygon, I’m grateful that the camping trip was beautiful for the most part. I can imagine Bryan’s frustration when he didn’t make those walks. It hurts, and we want to do it all with our families.

      Yes, many people stop at 800 or 1000 mcg and stay there until they think they are progressing and need to titrate up. The 1600 mcg dosage twice daily is the highest recommended dose that most try to get, but I know many who are under 1600. It’s worth it if he was feeling better at 1000 mcg to stay there, even try a few months and see if he thinks he wants to increase or remain there. Everybody is different, so it’s dependent on his body.

      Hugs to you both, and please let us know what his PH team suggests. Yes, thanks; I’m feeling better this week.

    • #35029
      ky
      Participant

      @Jenc, they want him to hold at 1200 for a while, no actual timeline I will keep you posted.

       

      • #35038
        Jen Cueva
        Keymaster

        Hi @kygon, hopefully, staying at the 1200 mcg dose of Uptravi will allow his body more time to adjust. Certainly don’t hesitate to contact his PH team if it doesn’t.

        Hopefully, you will have some garden and wine on the patio this weekend. But knowing you, you have some to-do projects on the list. Am I correct?

    • #35039
      ky
      Participant

      Hi @Jenc! haha how about a little of both! We are meeting some friends at the pool this weekend and then going to our place after for pizza and games, (but mostly back to the oxygen haha) , it will be fun for all the kids but Bryan is going to be pooped for sure, it’s triple digits this weekend and no amount of shade will fix that so thought we would go hang out in the water to wear out the kids before hanging out with our wine and card games. Should be fun! Hope you get some beach time this weekend! Love and Light

      • #35041
        Jen Cueva
        Keymaster

        Hi @kygon, is there shaded areas he can rest in a while at the pool? Or perhaps a clubhouse indoors where he may want to take a few breaks from the heat? The summer months have always been the most challenging for me. But not so bad with the temps here in San Diego.

        I hope the day turns out fun and he can pace himself and keep hydrated. Don’t forget to use sunscreen, too. It sounds like a busy yet fun-filled day with friends.

        Aww, wine and card games, one of our neighbors said last weekend that they want to teach us a new card game that I’d never heard of. I forgot the name of it now, though.

        Cheers to a relaxing and fun-filled weekend that Bryan doesn’t overdo.

    • #35043
      ky
      Participant

      @JenC, Yes there is shady areas and lots of recline chairs and grassy areas in the shade also. Cheers to you as well and cheers to you learning a new card game with great friends!

      • #35055
        Jen Cueva
        Keymaster

        Thanks, @kygon, I hope the pool day with friends went well. I am grateful that there are shaded areas and reclining chairs. I had a little pool time Friday evening myself. It felt so refreshing.


        @colleensteele
        , what a busy weekend! How was the comedy show? I’ve wanted to see one as laughter is the best medicine. It’s been at least 5 years or longer since we’ve been. Kev goes often, and I hoped to go to one before the pandemic hit. I hope you enjoyed a fun night out with friends; it sounds like lots of laughs.

    • #35045
      Colleen Steele
      Keymaster

      @kygon that sounds like a fun time! Maybe plan on some down time the next day?

      Look at us with weekend plans! Your get together with friends, @jenc has a date with her hubby and her E-bike and I’ve been invited to dinner and then a comedy club afterward with friends tomorrow. I haven’t been to a comedy club since college but I remember it was always a fun time! i can’t wait!

    • #35076
      ky
      Participant

      @Jenc, @ColleenS, Thanks for thinking of us, yes we definitely had fun Saturday and Sunday was rest and recover day; Bry napped most of the day while I weeded and cleaned LOL.

      I hope your weekends were also enjoyable and you got some recover time as well!

      I haven’t been to a comedy club in 9 or 10 years, it might be time to rectify that, I hope you got lots of laughs as @JenC says laughter is the best medicine.

    • #35080
      Jen Cueva
      Keymaster

      Hi @kygon, I’m grateful that Bryan rested after a busy Saturday at the pool. It doesn’t sound like you ever have downtime, my friend. You know caregiver burnout is common, and you have to take care of yourself, too.

      The weeds could wait, the cleaning too, right? I already sense you’re a go-getter kind of gal who is nonstop from when you wake up until you crash at night. Is this accurate?

    • #35092
      ky
      Participant

      @Jenc, LOL at the weeds can wait.. not on my watch! hahaha and you caught me, if I sleep past 8 am I am definitely sick.. I usually wake naturally by 6 and my work days start at 4:30 am.. and yes I am pretty go go till bedtime.. I Try to aim for relax for wine down time between 7-8pm and be in bed by 9. Reading your posts and some of your articles I think your disease forced you to slow down or you would be same (or worse) cough cough .. hahaha

      I don’t worry much about burn out, I do lots of self care and gardening is part of that .. but the dishes I do burn out on from time to time, and I really want disposable clothing to be a thing someday ..  hahaha When I get to a point when I start thinking Grrrr or glaring at my husband sideways, I simply go for a walk or once in a while I plan a run away weekend, I actually ditched him to hike with my sister a few weeks ago .. (my husband is snappy when he is uncomfortable but will swear up and down that he isn’t snapping! It makes me crazy! .. I know the why and I understand, but I am human and I allow myself to break away sometimes) but we also do great to re center together somewhere outdoors, even if it is just in a hammock by a stream 🙂

      I hope you get your own little retreats and remember when whatever is hard at the moment, it is just one moment, and being human is part of all of our condition, and no matter what we all fall ill to impatience and other emotions from time to time, and feeling guilty doesn’t do anything to fix it  right? HAHA just the other night I sat on my patio swing and just flipped off the universe, said not today Satan, and then I sipped my wine, and ya know what I felt so much better for no reason (other than the universe knows I flipped it off) hahahaha 10 outa 10 highly recommend flipping off universe on highly stressful days it might save a teenagers life from time to time too… hahahahaha

      • #35124
        Jen Cueva
        Keymaster

        LOL, @kygon, You’re a mess! I know we would stir up some trouble if we hung out. We could sit on the swing, flip off the universe, and sip our wine. That’s the best solution I’ve heard of yet!

        Yep, true; PH did force me to slow down- ask Manny. He would say no some days as I tried and kept going. I was upset on Tuesday that I didn’t get my workout done. I had worked, picked up around the house, and went to the grocery store; he said that was enough. Oh yeah, then we(I) made dinner. So, hopefully, I will do a little here shortly before I shower.

        I was an early bird before PH and until about two years ago. But now, my sleep-in is 8, and Manny thinks that’s too early on the weekend. Often I’m awake before then.

        Like Bryan, I can be snappy, too, especially when I feel horrible. That’s when I wish Manny would take a break, and he doesn’t want to leave me alone. He worries too much. But he can be pretty snappy himself, but he usually gets a headache or cold. We all need those getaways.

        Thanks for sharing such important and fun lessons. We need the laughs.

    • #35141
      ky
      Participant

      @JenC, I think your right, we would be a whole lotta fun trouble together! I will have to let you know next time we plan a road trip to CA, a sip and flip sesh is a must!

      I think if we didn’t have two grown boys living with us I would be less inclined to leave Bryan unless he had plans to stay or get away with his brother or pals for a spell as well.  (perhaps you could plan a little gal pal weekend at the beach and tell Manny its ladies only sorry babe) LOL But most of my escapes are just day hikes or even a quick deep breathing, weed pulling can prevent me from giving out the snap back at the snap… hahaha  but sometimes I am guilty of shutting the door a bit hard on my way out… oops my bad hahaha

    • #35143
      Jen Cueva
      Keymaster

      Hi @kygon, please let me know when you all make a Cali trip. That would be such fun.

      Yeah, when our daughter was still living at home, he would go, and she and I would do something or friends if I felt alright. When my mom was in town, she would come over, and we would watch movies and have a PJ day.

      Yeah, a friend and mine have been to a few outings with other girls since we’ve been here. But that’s usually only when I’m feeling alright.

      Manny says I “accidentally” let the doors go hard at times, too. Hehe.

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