Attention Caregivers: Are You Taking Care Of Yourself?

[jen-cueva]

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, and reminding them that it is OK to take time for themselves was always a big part of what I did. I have been guilty of myself and only now start to notice how I did this for years.

I think you are beautiful for the record, and I so wish I had your Dad’s hair, LOL. I think I started to see grey hair in my early 30s, hehe. I’m thankful for the hair color.

One of the biggest concerns I have always heard is time and energy, just as you mention. But it is important to me time, a great example for others, and I love the way you are choosing to start a new year for yourself. Nice job, and thanks for being vulnerable so that this will help others.

So, when is your first appointment?

[Colleen]

@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 appointments scheduled yet. I think the first ones I really need to do is the female ones. I am years behind on those.

[V.R. Peterson]

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.

[jen-cueva]

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 that, just yet! LOL

Ughh, yes, I usually schedule the gyne and my mammogram in October each year. This year I have yet to schedule them. I may do the mammogram because I keep getting notifications from them; Gyne may wait until next month. Keep us posted; we want you to get those scheduled; that is the first step! You got this!

[jen-cueva]

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? Did you have a walking friend before or alone? Before PH, my coworker and I would meet at the track at 5 AM. Often my young daughter(then) would go, too. She hated it, I must say, hehe- But we did at least a mile then went home and showered to get ready for work. I did better walking if someone was with me, holding me accountable, like a buddy system.

[V.R. Peterson]

@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 gravel lane (or up the mountain). When it starts snowing, when I decide to walk, it’s just circles in my 5-acre pasture; because there are no sidewalks along the road, I don’t want to risk a car sliding out of control on the icy road.

[jen-cueva]

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 ice. Yes, cars slip and slide all day in ice; that would be horrible!

Maybe you can start by short walks if your energy allows only on days when you feel like you do have the extra boost. I know, easier said than done, right?

[Colleen]

@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 probably isn’t helping either?

I would worry about you walking on busy icy roads too. Is there a park or nature walk anywhere close to you that you could occasionally drive to? This summer into the fall I’ve been taking my dog for walks a lot more often than I use to. There are days, like today, when I had to force myself to do it. I have to say thought, once I was out there I found myself relaxing and enjoying it.

[V.R. Peterson]

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 help, but I take a muscle relaxer at night. I’ll give myself a short time to indulge in my pity party, then I’ll pull myself up by my bootstraps and soldier on. It’s the only way to keep my sanity intact. ????

[jen-cueva]

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 rainy days are the worst for my back, neck, and shoulder pains.

I love this outlook; I’ll give myself a short time to indulge in my pity party, then I’ll pull myself up by my bootstraps and soldier on.”

– hugs from Texas

[Colleen]

Caregivers, how is the self care going?

I have gone from doing the bare minimum for myself to suddenly filling up my calendar with long overdue appointments.

I’ve been to the dermatologist to have some things removed, to the eye doctor where I ordered 2 pairs of expensive glasses. One for all activity including driving and the other are indoor glasses for computer work. Tomorrow I see my rheumatologist for the first time in a few years because my left knee is in bad shape.

Next I will schedule my female appointments and see my internist before I move.

What appointments do you have coming up that is specifically for you?

[jen-cueva]

I wanted to share my column this week. It’s about how I help my hubby, my caregiver, prioritize self-care. This is crucial to avoid caregiver burnout.

https://pulmonaryhypertensionnews.com/columns/ways-i-help-my-husband-caregiver-prioritize-self-care/

Shout out to all of our extraordinary caregivers. Never feel guilty for taking care of yourself!

pulmonaryhypertensionnews.com

Ways I help my husband and caregiver prioritize self-care –...

As a PH patient, columnist Jen Cueva sometimes worries that her husband and caregiver, Manny, doesn't focus enough on self-care.

[V.R. Peterson]

@colleensteele, on the 14th of this month, I had my second cataract surgery. I self-advocated by telling everybody who would listen that I’d woke up during the first surgery feeling everything. Not only did I not feel anything this time, but I was a literally dead head — numb from my left cheek to the top of my head — for several hours. And that’s how this caregiver took care of herself in September.

[jen-cueva]

Hey @V.R. Peterson, WTG on self-advocating! I’m so happy you spoke up and voiced your concerns. They must have given you enough for both cataract surgeries on that second one. Hehe

It’s been almost 2 weeks; how has your vision and recovery been? I still believe they did something wrong with Manny’s. He continues to have issues with that eye, and no glasses help. He has tried 2 separate RX in his glasses, and it’s worse than before. Unfortunately, he had it done in Texas, and we paid a lot out of pocket for one eye.

I’m so proud of you, Mamabear! But I know you stand your ground. I get that from you! Hehe

[V.R. Peterson]

@jenc, my distance vision in both eyes is now 20/20, and I’m fully recovered. I LOVE being able to finally see!

[jen-cueva]

That’s incredible, @V.R. Peterson ! I’m thrilled to hear that, and it must feel so good to see so clearly now! Congrats on having a successful recovery! Thanks for sharing.

[Colleen]

@V.R. Peterson and I hope when you spoke up, they listened! Did they give you a reason for it and was there anything they could do to help you?

But the good news is your eyesight has improved substantially and for that I am so happy for you!

[V.R. Peterson]

Thanks, @jenc and @colleen. They didn’t give me any explanation as to why the number didn’t work right the first time. They did promise they would make sure it didn’t happen again. This time, I had *two* anesthesiologists caring for me (as opposed to the one that cared for me during the first surgery). The new guy gave me something extra to relax me this time, but I’m pretty sure somebody gave me more numbing block than they did the first time, given how numb my face and head were for several hours after waking up the second time. I was grateful for that.

[jen-cueva]

Hey @V.R. Peterson, I’m grateful you voiced your concerns. That made the second cataract surgery go much more smoothly. I am like you- I would rather be numb a bit longer than feel them performing surgery on my eye.

WTG on self-advocacy! I hope you enjoy your weekend and your improved vision. Hugs are coming your way. 🤗