PH Caregivers, Family Members & Spouses

Ughh, so sorry for back pain. I also have some degenerative issues that add to my chronic pain. I love heat, like my heating blanket bit I wrap myself up like a burrito in it, hehe.

That sucks when you are allergic to so much, @mamabear007. I hope that you can find some type of relief. Colleen is right; the cooler air does not help. That and…[Read more]

Thank you, @colleensteele. My back pain is from degenerative disk disease. While my disks are either herniated (or gone, causing bone on bone in my spine) along the entire spine, I mostly feel it in my neck and shoulders. The past few days, I’ve been feeling in in my lower spine, as well. I’m allergic to most things (Rx and herbal) that would…[Read more]

@mamabear007 agh! back issues. I carry stress in my back and sometimes my RA hits my spine…not fun. Is your pain muscle or bone related? I swear by Icy Hot or BenGay with ibuprofen. The relief is never 100% or long term but it helps my ability to move around more during a flair-up. Do use or take anything that helps you? Change of weather…[Read more]

Oh no, back issues are no fun. So, walking made this worse for you? Some say walking helps back pain others say not. I am sorry to hear about the loss of your neighbor; this is too bad. Are you mean the back pain is zapping your energy to walk? Pain certainly will zap you fast!

I am happy that you have a backup plan for when the roads start to…[Read more]

@jenc, I stopped walking last year because of back problems that zaps my energy. There’s nobody within a mile who could walk with my. My neighbor used to live closer, but cancer took her far too early, leaving only his widower. If I would get up the gumption, there are lots of places outdoors I could walk — miles in either direction down my…[Read more]

Hey @mamabear007, I am starting to be a bit jealous now. As I mentioned, I started greying in my early 30s, not long after my PH diagnosis. Wow, impressive to be in your 60s and no grey; a few would be none to me, hehe.

Did you stop walking when COVID hit or before then? Can you walk in the beautiful outdoors? When do you strat get cold weather?…[Read more]

Too funny @colleensteele, I love that you took after your Dad with the greys! I also am impressed that you have never dyed your hair at all; wow, that is fantastic. If I did not do root touch-ups every 6 months, y’all would think I was ready for Halloween all year. My hubby, Manny, keeps trying to have me just let it grey. I am so not ready for…[Read more]

I’m in my 60s. While I only have a few strands of gray, the weight and lack of exercise have caught up with me. I really need to start walking again.

@jenc my mom started graying at 18 so the fact that I didn’t had me thinking I would be lucky like my dad and not see any until my 80’s. It’s weird, I’m not graying a lot. Every once in a while…often week’s apart, I will find one gray hair (and yank it out!) LOL! I’ve never dyed my hair and I’m trying to delay having to do that.

Agh, no…[Read more]

I love this column for so many reasons, @colleensteele! I am so happy that you are now making yourself a priority. I know that as moms, we tend to put ourselves last. Having a young child with PH and then going through a transplant must make things that much harder. I can only begin to imagine.

When I worked in nursing, educating the caregivers,…[Read more]

What an important topic. I know for me, not having my hubby with me for a few days was difficult. He is always there, and most of the time, will sleep at the hospital. I cannot imagine a young child and not having anyone with them. Often, I have heard that one visitor per day.

I hope that not many have needed to be hospitalized, but know many…[Read more]

Too funny @colleensteele, It is not anywhere near lunchtime, and just reading that your tummy is rumbling made me hungry. That does sound yummy!

These little traditions do help, and I miss those trips. When we first moved to Texas, we made trips back to San Diego each year. That is where he was at. Then, once he moved to Boston, we followed him…[Read more]

@jenc oh I love hearing that you and your husband created travel traditions too! It really helps, doesn’t it? It gives you something to look forward to and helps temporarily take your mind off of the medical concerns. Lobster, clam chowder and Dunkin Donuts are favorites of mine and now my tummy is rumbling just thinking about them!

Thank you for…[Read more]

I loved that column, @colleensteele. I also have been to the Mt.Shasta area and it was beautiful to see. The title of this column, I absolutely loved. It was such a catchy title.

When my hubby and I would travel to Boston for my PH trips. We would stay at one of the 2 places. One was a hotel outside of Boston, but we could take the shuttle and…[Read more]

@jenc I’ve mentioned it to Aidan too and he hasn’t joined. To be honest I also think it depends on the age group too. He’s 19, busy with work and school and also rather private about his relationship with his brother. I share things that I read here with both him and Cullen, when I think they might benefit from it, so in a round-about way they…[Read more]

Hi @colleensteele, this is an excellent topic and point. I had invited my sisters to join here a few years ago. They never did. I do think that siblings and other relatives or close friends could all benefit by joining the PH forums. I would think this would help them better understand those of us with PH. Wouldn’t you?

Hi @colleensteele, I am happy that you can stay with Cullen. But, still, I know you must stay there because once you leave, you cannot return until the following day. My hubby was not allowed after day 1, he snuck in day 2, and the last 2 days, he was turned away.

These new rules are to protect the patients, but it can be difficult for…[Read more]

I definitely would not be on a reality TV show. I would fill out forms and be in a study or two.
anne

Hi, Anne, my heart breaks for you and your husband. Like I said earlier, I am guessing that he is experiencing a bit of caregiver burnout. That certainly does not mean that it is OK to be “nasty” to you. I am hopeful that y’all can find some support with the advice and tips that @colleensteele and I both shared.

@colleensteele has shared some…[Read more]