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What Went Right This Week?
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Na, no worries , she’ll be right. should have said possible cracked ribs ,bloody sore still though and hurts to take deep breaths .ha. Taping restricts breathing .
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You’ve mentioned one of my all time favourites Jen. Especially by Kermit Ruffins or if I am feeling nostalgic Jack Teagarden. Much like PH not a bruise in sight Jen. . Made big mistake yesterday shopping . The Boss shops and I wait in the mall reading the paper . As soon as I sat down on a low backless bench I knew I was in trouble. Could not get back up normally. Only way was to brace right arm under right rib cage ,roll over on my left side ,slide down to kneeling position ,take a rest then use legs to stand. I think the boss wanted to disown me.
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Oh no, @terry! I know that was not fun. Certainly, the boss lady didn’t want to disown you. She needed someone to carry all of her shopping bags. Hehe.
I love @colleensteele’s comment to you. I was thinking the same thing but living with Manny; I know you men are stubborn. However, your comments and humor often remind me of my late stepfather, an old rugged cowboy.
He had a “fix” for anything we experienced as kids. He would say we need no stinking doctors, LOL.
Enjoy your weekend, and no sailing until you heal, Mate.
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My goodness Colleen your up late. Can’t sleep hey. Don’t blame you after what you posted elsewhere.Now where you may call us stubborn we say what you don’t know can’t hurt you . Ha. Why go to a hospital and risk getting a nasty or worse being put in overnight on one of those beds where the sheets are stiff and there is plastic underneath so you slip and slide all over the place. No its just mens logic. Why go through X-rays etc . to be told “ yep you have a torn muscle and bruised/ cracked ribs.Have a pill and a lie down”.
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@terry you make me laugh until MY ribs hurt! I suppose you have a point about going to the hospital to be told what you already know. I would just worry the injury might make your PH and other health concerns angry.
I’m afraid I’m often up late. I have a real problem turning my brain off at night. I also don’t like it when I miss a day in the forums so I will at times log-in late at night to check-in on everyone.
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Hey there @terry, it’s been too long, so you must be up to no good, Mate! Hehe.
How are you doing? Any new updates to share with us in the forums?
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Wishing you well, Terry! On the otherhand, what went right for me was a learning adventure. I am here in FL, and have been enjoying doing nothing much. This week I have a dear friend visiting me for the week, and I have been playing hostess and tour guide, and overall, doing too much. I learned to realize when my spoonfuls of energy were depleted, and that without O2, the rest of my body, not just my lungs, tends to run out of gas quickly. I’ve been getting home and sleeping for hours! but that’s the learning part, I know realize where that ‘run out of gas’ point is and I am able to pace myself much better. Gee! it took all this time for me to understand that. So it did go right, plus, I have my friend here with me, and she understands, so if I tell her I can’t do any more, she says OK, let’s go home. Love her!
As for me, next week is blood text and seeing my FL doc for my annual wellness check. and my INR has been steady all month long! Yay!
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Well done @tervo! Sometimes it takes an understanding friend to make you feel comfortable enough to listen to your body, learn your limits and call it a day when you need to. Now you know and next time you are with someone not so understanding you will know better than to let them push you. Friends like yours are a true blessing!
Best of luck during your upcoming appointments. So happy to hear you are doing well!
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Hi @tervo, excellent job on learning to listen to your body. You’re not alone; almost 18 years later, I continue to push my body some days. However, through the years, I’m learning to listen and rest. It’s a work in progress. Hehe.
I’m grateful to hear about your supportive friend. It reminded e when a long-term friend came to visit one year, and she was the same. At times we chilled in our PJs and watched movies and caught up. Recently, she was diagnosed with scleroderma and has told me many times how she thought she knew how I felt.
I am sending positive thoughts and prayers for your upcoming appointment. Hopefully, your INR continues to remain stable.
Enjoy Florida and listen to your body. Thanks for sharing; this is a huge milestone; win! Hugs from San Diego.
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Happy Friday everyone! How did your week go? Any special plans for the weekend?
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The last few weeks have been stressful and overwhelming for Manny and me. We were approached with a decision to move back to Texas. At first, it sounded great since we do miss family.
However, we finally came to our senses and thought bout why we moved here. It was for an improved quality of life, and my breathing improved.
Of course, my family was excited about the possibility. But again, we did this for ourselves, and it took years to take this leap.
We decided to stay here in SD and enjoy life as long as God allows us to do that. This is one reason my anxiety and focus have been all over the place the last few weeks.
It’s tough when my parents are older, and I want to be there for them as they were for me, but I also must live with Manny. Guilt is an ongoing struggle.
That and my bike ride were the highlights of last week for me. What about y’all?
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Bike ride?!! I love it!
I chanced across some “beach bikes” at a local hardware store a couple of years ago. Sitting out front on the sidewalk. Begging to be bought and ridden. I figured I’d try one out, so I set my purse down in a safe place and climbed on top of one of the bikes.
You know that saying about “it’s as easy as riding a bike” and the other one about “you never forget how to ride a bike”?
Well, they’re wrong! 🙂
So I’m very impressed that you rode a bike this week, Jen.
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@brendad53 you make me laugh out loud! I was admiring a nice country style bike last week but I haven’t been on a bike in many decades. Maybe it would be best if I just keep my feet on the ground.
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Hi @brendad53, you crack me up! I remember the first time I got on my E-bike. It was intimidating. I am generally clumsy, so I was shaky and took time to get it straight and not hit anything. Hehe.
If it’s been too long, Manny suggests we go to an area with no people or trees, etc. It’s like I need to warm up all over again. But once I warm up, It’s like I’m a kid again; it’s so freeing!
Some say it’s a chat bike; I say it offers me freedom like others while using my oxygen backpack. Of course, I have pedal assist and throttle if my legs give out fully. Hoping to get over 200 miles on it this year once this weird SoCal rain stops.
If you can tap dance, you can ride the bike again.
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@jenc you know I can relate well to this dilemma. For what it’s worth I think you made the right decision. You haven’t been in CA that long and are probably just starting to adjust. It’s wise to remember the reasons you moved and maybe in another year evaluate if it has benefited you as much as you hoped. I pray for your peace of mind!
Glad to hear you were “back on the road again”!
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Hi @colleensteele, I know you can relate to being away from your aging parents. That would never happen in Texas. I think if I can stop guilting myself, I will do alright. KK even reminded us that we do so much more here, and I’m outside almost every day.
This was OUR dream to come back. Unfortunately, I must remind myself that my parents won’t always be there. And then what? Plus, the air here has undoubtedly improved my breathing and oxygen saturation. Not being on my oxygen 24/7 like I was there when I left is like a dose of freedom.
ereMy dad is still 8 hours away from Texas but is doing pretty well for most art. I talk to him each Sunday usually and when he has any appointments in between. Thankfully, my two sisters are there, and their families can assist my parents as needed.
I also know in my health, I cannot be their caregiver too. Plus, the drama with family is still there and won’t change, unfortunately. Maybe we can chat later this week and catch up again. Love and hugs are coming your way, my friend and FWW!
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Yesterday I had my first virtual visit with my new therapist. I’ve been reluctant to find another one since I’ve only had one in Texas and had her for several years.
However, my psychiatrist encouraged me to connect with a new therapist to help my increased anxiety recently. So, I drug my feet but finally found someone I would make an appointment with.
This was yesterday., She was polite, pleasant, and personable. The first appointment or two is usually getting to know a bit more, so I will have a better idea after a few months. But we clicked this first meeting, and she was comfortable to talk to.
As I prepared for this week’s appointment, I thought of some of you. @dawnt, you kept popping into my mind. Thanks for the extra boost of hope that I could do this, too.
How has everyone’s week been? Our lovely ladies @mainegal and @tervo also made my week by sharing their monthly luncheons. I would love to join in and invite everyone else around a huge table. Now that would be incredible!
Enjoy your weekend, and I’ll see y’all on Monday.
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Mama Bear made my week, yesterday. That’s all I’ll say. She gave me a big gift.
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Hi @brendad53, I’m so happy that @mamabear007 made your week last week. Now you know, we are hanging on at the edge of our seats, LOL.
I’m thankful that you ladies connected and for her sending you this way to the PH forums. She’s so supportive and kindhearted. I can only imagine.
I love that she made your weekly win last week! <3
Hopefully, this week your win will be a positive takeaway from your pulmonary rehab. Or, maybe you'll get that O2 set up and start using it at night. 😉
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@brendad53, 🤗💜
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@brendad53 @mamabear007 inquiring minds want to know what you two have been up to! Nah, you don’t have to say. It’s nice to hear about members helping each other beyond the forums!
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Honestly, Colleen, I’ve written a blog about it. To be the initial blog for our “under construction” mPTSD website.
Right after cancer treatment ended, I wanted to die. I hated my doctors, my nurses, and the medical world as a whole. I hated them passionately.
And I hated myself even more. I hated that I couldn’t be the “nice” patient, the meekly submissive patient, that they wanted me to be. I hated that I mistrusted them. I hated that I was afraid of them. I hated myself even more than I hated them, and I thought that perhaps it would be better if I just died, because I couldn’t see any way to get rid of my fear and learn to just simply trust.
I have written a book manuscript. Mama Bear began reading it. In the first couple of chapters, I explain how mPTSD expressed itself in my life before I even realized I had it. It helped me (or my family) avoid medical harm, a few times — that mistrust and fear that I have hated myself for having. (Even when the self-hatred faded, sincere regret has remained.)
Mama Bear read those stories, and told me that she understood me better. She said God had given me the gift of fear to keep me and my family safe. It was the first time that ANYONE has ever framed my mPTSD as anything other than pathological to one degree or another. It made me want to cry. Still does. That the thing over which I at one time wanted to die could, in fact, be construed as a gift and not a moral failing, not as a psychological defect, not as an insult to doctors and nurses everywhere…. That it could be a gift. Wow….
It hit me hard, to think positively of one of my big “negative” traits. I’ve felt that my mPTSD is protective, and I don’t want to exactly lose it. But I’ve never thought of it as a gift. And from God, no less. What higher imprimatur of approval could be bestowed, than for it to come from God?
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@brendad53, I meant every word. 💜
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Wow, @brendad53! I’m in tears after reading your update about @mamabear007 reading your blog, and helping to validate why you have so much medical PTSD.
This must have been an enormous gift, as your gift of protection has been for your family. Thank you for sharing with us.
Shout out to mama bear for being the one who validated and helped you understand your PTSD more. What a wonderful connection you two ladies have built. <3
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I’m posting this response and update from @dawnt. She had trouble posting and messaged me so I could share her update.
Dawn says, “Hi @Jenc. Glad to hear you feel comfortable so far with your new therapist. I’ve been doing well with my new therapist as well. I think having my therapist talk with her to give some background made it easier. It’s a hard choice to make sometimes, Jen, but I’m glad you put yourself first and didn’t let your discomfort about working with someone new keep you from making an appointment. I was able to post my recent reply about losing a pet, but tried to post another update post after that one and kept getting a message that my reply couldn’t be posted at that time. I tried another time, and got a message that I used an inappropriate word. I had replied to one of the email notices that let me know you had mentioned me in one of your posts, in hopes my reply would get to you, but apparently it didn’t. I wanted to share that I finally got an answer to my decline with my breathing this past year. I found out I have a myco bacterium absessus respiratory infection. There is treatment, which I see a dr about later this week. I’ve been told the treatment can be ’rough’, and take 1-2 years to totally clean out the infection, but I’m just glad there is treatment. Both my lung specialist and ph specialist told me they were surprised because they didn’t expect the problem to be this. The dr who did my bronchoscopy said my lungs are full of infection, and my lung specialist showed me the scans from my last ct chest scan that showed how much infection there is. It’s absolutely no wonder I’ve been feeling as I have! I’m a bit afraid of how ’rough’ the treatment might be, but I’m reminding myself that it’s not an absolute that it will be rough for me. And, feeling better will be a huge positive to keep focused on when/if things get rough.
Great job with your reaching out to a new therapist Jen! Hope everyone is doing well.
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Hi @dawnt, sending you lots of extra hugs, love, and prayers for Thursday’s appointment with the infectious disease doctor. I know the treatment may be time-consuming and rough, but as you said, it will be worth it when you can breathe better.
Thanks for your support as I start this new journey with my new therapist. Your support means more than you know.
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Dawn, that lung infection thing sounds horrendous! I trust that the treatment to clear it won’t be as bad, in the end, as having to live every day with the infection. Here’s remote <<hugs>> and energy coming your way to help you weather the treatment and come out on top.
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@dawnt wow, this is big news for you! Awful that you have had a raspatory infection this whole time but at least you finally have an answer and best of all, treatment! Needless to say, you are very much in my thoughts and prayers!
@jenc I’ve neglected to mention how happy I am for you that your new therapist seems to be a good fit for you! I know how important that is and you deserve to receive the kind of compassionate care that you always give!
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Hi @colleensteele, thanks for your heartfelt kindness. It means more to me than you know.
My next appointment with her is tomorrow, the same day @dawnt sees her infectious disease doctor. I’ll be keeping you in my thoughts and prayers, Dawn. <3
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@jenc @dawnt I will be thinking of you both tomorrow and praying all goes well. Looking forward to your hearing how everything went and that it’s good news.
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Thanks so much, @colleensteele. I just finished m,y second appointment with my therapist. It went well and was more of a conversation than an interview since she had many questions last week as she got to know me better.
We will meet again next week, and I’m looking forward to that session. We plan to find ways for me to deal with the guilt I carry inside and can’t turn off.
I’ve had @dawnt on my mind as I started my morning with my devotional. I often pray for who pops into my head and usually have a long list and eventually tell God he knows the rest. Good luck, Dawn, today, and keep us posted when you get some time and energy.
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@dawnt was having trouble posting her response; she sent me the comments to share. My apologies, Dawn and anyone else having trouble posting in the forums. I’ve let our tech guy know if he has any other suggestions.
Dawn says, “Hi @colleensteele and @jenc, @brendad53 – thank you for the thoughts concerning my diagnosis & appointment. I really liked the doctor I met with this past Thursday. She comes to State College monthly, although I saw her at Geisinger Danville. She went over everything, said it’s fine to have my treatment done here at home, and she is willing to work with my ph doctor since he wants to be kept updated on the medications being used in case we need to adjust my ph medications. She explained that the type of infection I have actually has two different variations, one that is resistant to the antibiotics treatment and one that is susceptible to the treatment. If it’s resistant, I’ll be on 3 oral antibiotics and I.V. treatment. If it’s susceptible I’ll only need the 3 oral antibiotics. Hershey medical, where I had the bronchoscopy done, didn’t test for which type of infection it is, so the dr contacted them to have the test done. I’m really hoping for no I.V. treatment because she said they’ll do a picc line if I need those treatments. Doing a bit of reading on picc lines I found references to possible bleeding issues and blood clots. I have genetic mutations that affect bleeding/clotting, and have had a superficial blood clot, a dvt, and numerous pulmonary embolisms. So having a picc line would concern me. Whatever it requires, though, I’ll get through it. She said it’s totally treatable, but takes time. Pretty much along the same 1-2 year time frame that the lung specialist and ph dr told me. I felt really comfortable with her, though, and feel like she’ll be on top of the treatment. She said I’m ‘confusing’, my lung specialist at Hershey medical said I’m ‘complicated’…so what else is new?!!
Jen, so glad you’re feeling comfortable with the new therapist. It’s so important to have a good rapport and comfort level with a therapist, I think. Great job!!
Colleen, great news about Cullen! When I was on phones at my job, I dealt with a lot of calls from parents and students about scholarships and aid. I remember I saw a story on 60 minutes, or a similar show, about a young man who actually created a scholarship search site because of his struggles finding aid for college. It’s called My Scholly. I can’t vouch for it personally, but I’ve heard good things about it.
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What went right?? I woke up each morning (I’m working on being grateful for something every day).
The weather was really nice and felt more like spring, so I got more fresh air than usual. Tuesday I felt well enough to get in a good workout (pacing of course) at cardiopulmonary rehab, tho I just go twice a week for the maintenance program.
To end the week, I got an echo and had a very productive follow-up with my cardiologist today. I will see my PH doctors for follow-up in April.
Now, on to the weekend!! 😃
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Hi @deetweedy, I usually start my mornings with a quick devotional for women and then 3 things I am grateful for. Before, I used a Gratitude journal and did that for years. I’ve not been on top of that recently, though. Maybe I need to buy myself a cute little notebook or journal. I’ve tried using the note app on my phone and my devotional app. But I guess I’m old school; I need a pencil or pen in hand and paper.
Doesn’t the weather and arrival of Spring boost your mood? I know it does mine. Hopefully, this week will bring you so more enjoyable weather.
Like you, my long-term PHriend stayed on maintenance for years until her insurance stopped paying. Now she works out in some way every day. She’s dedicated and stays on track much better than me.
It sounds like your Echo and cardio appointment went well. Let’s keep that trend rolling on it to April.
Thanks for sharing your weekly wins! I love hearing about each little victory from our members. Cheers to the new week ahead!
Maybe @colleensteele will share her wins last week once she pops in later today. <3
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@deetweedy it’s amazing what fresh spring air and longer daylight can do for a person! We are finally having some of that today. It’s been raining and hailing a lot here in WA since last week.
I admire your positive attitude and attention to gratitude! It’s wonderful to hear that things seem to be going well for you both physically and mentally. I’m hoping to hear another good report from you after you see your PH specialist in April!
@jenc is nudging for me to share Cullen’s big news. Since Covid he has been doing on-line college classes with Southern New Hampshire University. That has gone well for him but he has been hoping to eventually attend the University of Washington. He applied to the UW an in just 2 days he was accepted! So incredibly proud of him!
Now just pray he is able to get some scholarships!
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I’m thrilled for Cullen! Way to go! Now, for the scholarships, I suggest he play every darned card he might hold. Including health.
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Hi @colleensteele, yes. You shared Cullen’s big news! I was so excited when you told me. It was speedy to be accepted after he applied. I was surprised by how fast it happened. I know y’all were, too.
I agree with @brendad53; it’s time to play any cards he can. Cullen doesn’t like to talk about health, but I know he needs to for college, and he will do an amazing job at sharing his struggles and how resilient he is.
Come on, scholarships; our Cullen needs all he can get! I know you and the rest of the family are incredibly proud of Cullen!
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@colleensteele, please tell Cullen I said CONGRATS!
I’m with @brendad53 and @jenc, Cullen needs to use every angle in applying for scholarships. If he can turn a negative (his illness) into a positive (a college scholarship), I think he should go for it!
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Cullen has “fight” built into him. He was sick from childhood, and it’s just been his nature and his constitution to hang on, to fight, and not to be afraid to take next steps when those steps present themselves as possibilities for improving his future. (I mean, come on! A heart/lung transplant?!!!!) So I think he should use that inborn AND learned capacity to work hard, to hang in, to fight for a good future as a grounds for every single grant or scholarship or free money he can possibly lay his hands on. And if I should win the lottery between now and when he graduates, he can count on support from me! 🙂 (Don’t hold his breath on that one! Winning the lottery, I mean. I don’t have that kind of good luck!)
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Hi all! Colleen, what a wonderful thing to get to report! Congrats to Cullen, and remarkable that he did hear back in such a short time. That is the first hint that this is meant to be. I wish him well in getting scholarships/assistance and that he will use whatever is at his disposal to pursue all the help he can get.
Scholarships really helped my son with college years ago. They are there to use, so get all you can get!
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@brendad53 @jenc @mamabear007 @deetweedy thank you all so much for being just as excited as we are for Cullen! I will let you know how the scholarship search goes. I think I have convinced him to share his story. He has the grades, now tell them all you have gone through while achieving them!
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Yes, @colleensteele, I hope he will share, as this only shows how resilient and determined he is. That is important in college! We will all be here biting our nails until we hear more in the coming months.
As I told Cullen, his hard work is paying off! <3
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G’Day, So I put my ugly face up together with a long diatribe on my medical exploits only to be told my face is ok but sorry, boring so we lost the other. Ha The most important part was that the boss and I attended the doctors together for our 5th covid shot .That was the first time in 57 years we have been together in a doctors consulting room . Might do it again . Na, Secret women’s business and all that .
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Hi @terry, you are too funny, Mate! That’s interesting that that was the first time you and the Boss were together in a doctor’s consulting room in 57 years! I’ll take it that is how the Boss Lady wants it, LOL. If not, you would be doing that more often. Hehe.
Did you two happen to go out for a coffee or quick bite afterward or straight home?
That was your 5th COVID shot? I’ve only had three thus far. I think @auntlizzie also shared she had several more, and she’s in Aussieland, too, I believe? Am I correct, Lizzie?
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@Colleen and @JenC I just wanted to follow up and let you know that the baby shower was a huge success! We had 64 guests in total and I decorated to the hilt, balloon arch and all!! We did a diaper raffle and they got SOOO MANY DIAPERS! Very excited to see his little face in May! We have another big party this weekend for a friends birthday and my husband is like are you running a catering service yet? hahaha Ahhh NO. Its fun but tiring but you are always in my heart and prayers!
I am certainly jealous to hear of all these spring professions, we are still covered in snow with more snow showers through next week .. CRAZY as I am usually weeding my spring garden by. I have yet to get one daffodil bloom! But I am so happy to hear of all your reports of sunshine and looking forward to it coming my way!
@Colleen that is so fantastic about Cullen!!! Certainly something to celebrate indeed!
Love and light to everyone and congratulations on all of your weekly wins! Cheers to everyone!
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Wow, what a baby shower, @kygon! That’s huge, and it sounds like it came out lovely! I helped a friend with her daughter’s baby shower just before we moved to SD. That dang balloon arch was the devil for me. It didn’t help that it turned out to be a windy afternoon.
Never too many diapers, right? I know you and your family are excited to have that little one arrive. It won’t be long.
Geez, you are the party planner and caterer, hehe. I need your business card. Well, if it has your home address. I can crash the parties, hehe.
Ky, you are not alone. It is officially Spring, but even here in SD, we have had some wet and much cooler temps. I am so ready for more of my sunshine. It’s out again today and should get to 63 degrees sometime. I know in Washington state and many other areas, they say to keep your snow shovels out for a bit. I’ll share my sunshine when we have it.
Thanks for your update. That was a huge win and success. Now on to the next, my friend. Hugs, light, and love care are coming back your way, Ky. Enjoy your weekend party and hopefully, you and Bryan both can relax or crash on Sunday evening. <3
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@JenC I have news! Our first grandchild was born yesterday evening, she is more hair than baby but healthy even though she was a two weeks early all is well. It was a home birth so we don’t have a weight etc. however we have done our first video chat already and Bryan booked us flights for this weekend to go see her pretty little face. So we are officially grandparents!!!
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Congratulations! Being a grandparent is way, WAY more fun than being a parent! Enjoy your baby. What’s her name?
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Hi @brendad53, how many grandkids do you have? I know you have some that live close to you, right?
Did you go to rehab this week? How is that going?
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Hi @brendad53, how many grandkids do you have? I know you have some that live close to you, right?
Did you go to rehab this week? How is that going?
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Jen, I have 3 grands, ages 12, 9 (nearly 10) and 4. They wear me OUT when I take them for an overnighter!
I went to my first pulmonary rehab today. This was intake day. Lots of tests and measures. The real work starts on Monday. One of the tests was an indicator of what percentage body fat I have. I’m not even going to try to share that here, but suffice it to say that I am appalled!!!!!
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Hi @brendad53, Oh boy, I bet those grandkids do wear you out. I would be like only 1-2 at a time, hehe.
Well, I’m happy to hear that they did some testing at rehab to evaluate you. However, if you’re anything like me, after being appalled at your body fat percentage, you sat on the couch or recliner with a gallon of ice cream and a spoon.
I don’t recall having that one done. Is it the pincher thing? My daughter and hubby have that done when they go to gyms.
Do you have any plans with your grandkids this upcoming Easter weekend?
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No plans this weekend, except to sit back and rest a bit. It’s supposed to be rainy, so there will be lots of indoor work to get done. And sleeping. I think a nap or two may be in order.
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And BTW, YES….the ice cream. Not in a bowl? Why have to get up and fill the bowl over and over? Why not just eat out of the carton from the outset?!! Of course, that works because I’m the only human living here.
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Hi, @brendad53; I love that about not wasting trips to refill a bowl of ice cream! I’ve tried to tell Manny to buy 2 small ice creams so I can do that, too. However, he often finishes both before I have a craving, LOL.
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Hi @kygon, I am super excited for you and Bryan! Congrats grandparents. Have you picked out a name, like Grammy? What will you be called?
You and Bryan will have such a precious and beautiful Easter weekend being there and seeing and holding your new granddaughter. I don’t know how y’all will contain your excitement.
Thanks for sharing such an important and exciting milestone. What state do they live in again? I know the others live there, right?
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@colleensteele What great news about Cullen and college! Congratulations! There is always a way to pay for college. He’ll find it!
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Brenda
In answer to your question about breathing and oximeter levels my logic is that if I hyperventilate to get to 98% (sometimes 99%) then I know that my tubing isn’t blocking flow and that when I stop and go back to normal breathing I’ll be in the mid 90s. I’ve often checked a while later and my O2 level is 95 or 96%. There is another factor. I my oximeters are not ‘medical grade’ – at least compared to the ones my doctor uses – and almost always it takes a while for it to start reading properly. Don’t know why that is so I keep it on my finger. My palliative care doctor say’s don’t cheat but when he takes my O2 level is is always in mid-nineties. A lot of words to explain. As long as your normal breathing stays in the 90% range. It has been exactly four years since I started using O2 tanks and I can get 95% with the settings on the valve.
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Thanks, Randolph. That helps me understand a bit better.
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Lets see oxygen levels were good. Hung out with the granddaughter for the day. In the past few weeks it has been hard to get motavated to do anything, even though the weather has been somewhat good
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I have the same issue at times, Erik. Do you have any tricks you use to nudge yourself out of that low motivation condition?
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My wife gets me motavated, most of the time, but some times nothing helps. I have 2 dogs which take up most of my day, by takeing them outside and since they are active dogs i have to play with them. Which helps too. They make it fun
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Hi @erikborn, kudos on the oxygen; levels are good this week. A big win is any time with your granddaughter.
I relate with the dogs keeping you busy. We have a new puppy; she is now 4 months old and keeps me busy and exhausted most days. The weather has been nice this week, so our many short walks are about all the exercise I have been getting. By the afternoon, I am done.
Maybe it’s not the lack of motivation, Erik, but moreso fatigue after running around and playing with your granddaughter and 2 dogs.
@brendad53, we all have days with little motivation. Being outdoors in the sunshine and fresh air helps motivate me. I am also trying to find a better daily routine to be more productive. However, I also realize some days, IU may do nothing more than take care of Zoe and me. That’s OK, too, as long as I don’t stay in that mode too long.
Are you outdoors most days?
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Hey, Jen. Not outdoors regularly, though with the weather warming up and all the yard work to do, that’s going to be changing.
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Hi @brendad53, do you notice you are more motivated as the temperatures warm up? Or do you do the necessary yard work outdoors because it needs to be done?
IDK why I had you pegged as an outdoor person. Maybe What have the temps been in your area lately? Perhaps the fresh air of the outdoors will benefit you.
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Jen, I am a bit more motivated when the temps warm up, but I don’t think it’s the temp, per se. I think it’s the sunlight. I didn’t used to notice any difference in energy or anything else seasonally. Now I have very clear seasonal allergies, and I also notice that I get more into “hibernation” mode in the winter. I figure it’s OK. If it works for the bears, it works for me! But there is less outdoor work that NEEDS to be done in the winter (though plenty that could be done), so that also helps.
I’m actually a sit-on-my-keister-and-read kind of person! Not an outdoors person. Which is why, when I bought my property in 2005, I was so proud of myself for taking care of things inside and out all by my lonesome, and working as hard as I could even in the murderous humidity of a NC summer. For a couch potato/book worm, I was doing good!
Then cancer hit, and everything changed. That was in 2009. But for 4 years, I got a lot done and gained a new image of myself as “outdoors-y if I have to be.”
The temps were warmer than seasonal, a month or so ago, but lately have turned chilly again. Global warming! What an enigma! We’ve just had two days of steady, cold rain. That’s my excuse for not trying to do the first mowing of the season.
Just went to my first pulmonary rehab class. Exercises. Of course I could do them. It has taken everything I’ve got for the day…but I could do them. That’s what the nurses running the class won’t see—what happens when I get home. Ah, well….
Brenda
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Hi @brenda, I am like you and prefer warmer temps and hibernate like the bears in cold weather. Let’s not forget the stash of goodies to keep us from starvation. Hehe.
Yes, I relate to the heat and humidity, as I dealt with that for years in Texas. Kudos to you for keeping up with a home -inside and out. That is a ton of work, and IDK how big your place is. But I know doing all that now is too much, but you still do more than many.
Cardiopulmonary rehab was exhausting for me, too. I would go home and crash on those 2-3 days per week. My PH team was expected and OK. The goal was for me not to be as exhausted by the end of the program. Maybe others can offer their experience, and we are all so different. But you’re not alone. Take one day at a time, my PHriend.
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Today I thought of a win as I showered. In the last week, PHoghtng COVID, my SOB has increased. A shower the previous week for me was like I finished an exercise class. I struggled much with a short shower. Today, I showered and washed my hair. I noticed that I wasn’t struggling as much.
Still, I sit while y hair mainly dries before I get back in there and dry and straighten my hair. I know this means I am finally going in the right direction, recovery. These small victories are reasons to celebrate.
What wins can y’all share? It’s on Tuesday, but I bet you all can find some tiny win to celebrate each day.
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Jen, I didn’t realize you had COVID. I had it in early February. Thought it was just a head cold, but tested out of courtesy to incoming visitors, and found out I was wrong. It was COVID! I am so sorry that ANY of my Phriends get that stupid virus. I’m so mildly affected by the breathing issues, compared to almost all of you folks. And I feel so sad and frustrated and a little anxious on your behalf, when any of you get something that adds to your breathing difficulties. I hope you continue on your upward trajectory, Jen. (But I know exactly what you mean about the effort it takes to simply take a shower.)
Last week I had my first real, true week of pulmonary rehab. That was a big “win” for the week. (Of course, I flunked out of pulmonary rehab yesterday! They thought I was having a heart attack. I wasn’t. Just same old symptoms. But they wouldn’t let me finish exercising!)
I also got a lot of writing and editing chores done last week, so that’s a definite win.
I finished reading a two-volume book, so that was a win.
I did NOT kill my dogs for getting into the trash bags in the back of my truck (waiting to go to the dump) and tearing them open and spreading the trash all over the yard, which I had to pick up when I got home and found it, despite the fact that I was so exhausted I could barely walk, and then an hour or two later when they threw up in the house, ON the carpet of course, the garbage they’d eaten from the trash bags and of course I **really** had to clean that up right away even if I had to do it by crawling around on my hands and knees. That was a win for THEM, for sure! 🙂
Oh! And I met with a new friend for lunch at an Indian restaurant. That was fun. I’m finding, however, that the spice pallet in India is a not something that particularly grabs me. It’s a taste I’m going to have to slowly acquire.
So that’s the news from the Great State of North Carolina (USA).
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Hi @brendad53, no worries, I was keeping quiet about our COVID for the most part. Despite how mild they may be, your breathing difficulties are not fun and are just as important as those with moderate or severe.
I appreciate your support. Showers come to be a chore. Something so routine, and others may never think about that as being so challenging.
Wow, what a week you had! I love the part about the dogs’ win. However, I would want to kill them after getting home exhausted from that. I’ve had many single PHriends through the years, and they are like superhumans in my book! Many of us who have partners/caregivers don’t realize that.
Those like yourself living alone are responsible for everything. I know Manny went back to work today, so I am home alone with Zoe. I miss having him here to do all the walks and things needed besides simple tasks each day.
How did you meet your new friend? Online? Do you make new friends often? I also don’t have the palate for many Indian dishes. It’s an acquired taste.
Hoping you have a great test of your week. Thanks again for the updates and your support.
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I met Jan because we’re both participants in The Patient Revolution — trying to make health care more patient-centered. We are “fellows,” and we both were present at a zoom fellows meeting. When I realized she was near me, we got together. She’s a hoot!
On another topic, I was looking for another document today and found a document I’d created in 2016 that debated whether or not I had pulmonary hypertension. As I’ve been trying to remember why, it’s because I had gone to the ER with the same symptoms I have today to try make sure it was NOT a heart attack. It wasn’t. But they found a lump in my lung, which they later decided was nothing. So I went to a pulmonologist to double-check their analysis of the imaging, and SHE suggested pulmonary hypertension. She offered a heart catheterization at that time, but because it is an invasive procedure, I decided not to do it. However, when I studied up on PH, I realized I had a number of the symptoms of it. Go figure.
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Hi @brendad53, that’s so cool that you met working on The Patient Revolution. How did you get started with this project?
Meeting others online is nice, but even better when we can meet in person. I’m grateful that you found a new friend nearby.
Ironic, right, that you found that old document from 2016? Too bad they didn’t treat you back then. SMH.
Unfortunately, many go undiagnosed from PH and other illnesses. Thanks for sharing your experiences, Brenda.
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Good news from MI! It may be snowing, but my 6-mo check (blood, Echo, 6MW, and Dr. visit ) all went well. Dr. says I’m stable, no changes to my meds. YAY!
And I’m back to my regular exercise routine, so that’s a plus. AND I got clearance to fly if I want to, rather than take long drives to get someplace. All in all, a good Monday in April.
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Hi @tervo, what an excellent report you share with us all! WTG, girl!
I love how you start with, “it may be snowing,” and then hit us with the good news! So, are you good for another 6 months?
That’s such exciting news that you can travel by plane. You and your hubby seem to enjoy traveling, which will help you get places and have more time to visit. I had several years when I couldn’t fly, which was challenging. It feels so good each time I can now fly somewhere. So, where will you fly first?
Did you carry back some Florida sunshine with you? I hope your week continues to be full of joy. Thanks for sharing with us, my PHriend.
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@jen I hope you are feeling better. @kygon congratulations on being grandparents!!
My win for the week is I am finally home. We have been traveling for the last month back and forth to TN to visit my father-in-law and help my mother-in-law. My FIL passed and I have hopes to bring my MIL home with me in a couple of weeks for a visit. I don’t regret all the trips, but ready for a routine again.
My other win is that I finally had my fitting for a CPAP. My appointment has been cancelled since November. I slept poorly during the fitting and the mask wore a place on my face. I hope when I start wearing it I can place it better on my face. The next day I was very tired. Maybe it was the restless sleep the night before or maybe I was just crashing due to all the travel here lately. Any way, I feel better today. Taking it easy.
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Hi @debbie, I’m sorry to hear about the loss of your father-in-law. I’m grateful y’all can bring your MIL there and have her at your house for a while. I’m thinking of you during these difficult times. The traveling back and forth and the stress during such a difficult time probably haven’t helped your fatigue.
A routine is something I, too, crave when it’s gone. I do better on a pattern. I’m just wired like that. Hehe.
Yay for the CPAP! I suggest you have the RT come out and do a fitting evaluation. Maybe you need a different type or size of the mask. It sounds like a fit issue could help.
I’m grateful that you’re back home. Hopefully, you can return to your groove and feel rested once your CPASP fits correctly.
Welcome home, sweet PHriend! Thanks for your words of support. Take care of yourself.
I offer my deepest condolences to you and your family.
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Jen, yes, I am good for another 6 months! I did try to bring FL weather back with us. The sun was shining and it was FL warm when we arrived in MI and 2 days later, MI decided to hit us with the snow and cold! It’s starting to warm up now, finally, with sunshine, and it smells of springtime in the air.
Don’t know where we will fly, but it is is nice to know that I CAN! Right now, we have 2 road trips ahead of us. One to IL and IN, and the other to MN. We’ll take a ride on a car ferry to get to MN, something I’ve always wanted to do. We take our time on these trips, stopping off wherever we want. Now that I have a portable O2 concentrator, we get out a lot more. Be well, my PHrend. And give Colleen my love and support, too.
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Aww, don’t you love the smell of springtime? @tervo. I’m happy you did bring that Florida sunshine back with you.
That’s a blessing that you are good, like having the clear for six months! I’m excited that you and @auntlizzie both had a positive six-month check-up. Let’s get that going, y’all!
Your road trips sound perfect. I love when we can travel to enjoy ourselves at our leisure. Safe travels the rest of the year, and we look forward to hearing about these trips, especially the car ferry ride.
Take care of yourself, and don’t be a stranger. We enjoy hearing what you and your hubby are up to.
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Happy Monday, y’all. We like to share our tiny victories, so I would love to hear something you consider a “win” in the past week.
Yesterday, Manny and I took our bikes to Balboa Park and rode a short ride around the park. It was my first ride in some time. Frustrated because I could feel how much the last bout of COVID did to my breathing.
I was noticeably more SOB early in our ride. Manny wanted to stop, but I raised my oxygen and said we could stay longer. I know I need to know to rebuild my strength. It will take time.
But, my silver lining was I rode my E-bike, and it was the perfect day to ride. Fresh beach air, sunshine, and 67 degrees! Let’s hear about your tiny victories!
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Congrats to @kygon and Bryan on their newest grandbaby, only grandson, Lennox, this week! He is a precious big 8-pound boy with the cutest cheeks!
The grandparents are soaking up the new baby smells, cuddles, and naps. Ky says she walks when he’s fussy, and Papa Bryan rocks and naps with him once he’s calm. I love it!
We know Ky will be tied up loving that baby boy for as long as Mom and Dad will let her!
Happy Mother’s Day to you, Ky, and the new Moma! <3
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Congrats, @kygon and Bryan. Getting a new grandbaby is always reason for celebration!
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