Checking In On A Few Of Our Members

[jen-cueva]

Hi @Colleen, thanks for doing this. I often think of members and forget to post to ask how things are going. That’s my CRS, I guess. 😂

You tagged several that I’ve had ion my mind. But also would like to check in on @Kali Greathouse , @ky , @Dawn , @Tyler Chapman , and @Nancy McSweeney . How are y’all doing as we jump into this new year?

[brenda-denzler]

Colleen, thanks for checking. It sounds to me like you’ve had your own set of trials and illness, so I hope YOU (and yours) are doing better at this point.

I’m doing alright. A busy and sad and intense period for November and December, but I think things are going to be settling down now. My participation in pulmonary rehab has been pretty spotty, but I seem to be holding my own (mostly) with my stamina when I get up and try to do things. At long last I’m looking for a new hematologist to get a second opinion about my blood clotting issues. The weather is turning pretty cold here, especially at night, so I’m burning my wood stove a lot more. Gotta love that warm, wood heat! Actually got around and dusted almost my WHOLE HOUSE at one time a couple of weeks ago. It was amazing to have a dust-free house for a while.

[Colleen Steele]

@brenda-denzler losing a loved one, especially a parent is hard, but when it happens around the holidays I would imagine that adds to the ache and emptiness. My heart goes out to you and your family,

I can appreciate the energy it took to dust and also how good it felt once it was done! If you want to feel even better you are welcome to come help me dust my parent’s house because I think it’s been a while since my mom has done it.

Pop in when you can and update us on how things are going with you medically. Keeping you in my thoughts.

[jen-cueva]

Hi @brenda-denzler, I can only imagine how sad these last few months have been for you and your family. From your previous posts, it sounds like you had a complex relationship with your father. Did that come up more as he declined after his stroke? I would imagine that has to add more complicated emotions as you grieve his loss. 🤗

Wow, impressive dusting your whole house! I’m cracking up at @Colleen ‘s comments about coming to dust at her parents’ house. I’ll be the second dusting spot if it’s available. Hehe.

Dusting for me is something I try to do by room. But often, it is broken down and takes forever. Because my bedroom is at the back of the house, it’s often the last spot. Last month, the dust and supplies were on my dresser as a reminder for a few weeks. That certainly takes stamina, my PHriend.

Good luck with finding a new hematologist. Please keep us posted. ❣

I hope you enjoy the warmth of the cozy wood stove. Do the smoke or smell from the wood not bother your breathing? I remember the warmth and coziness of wood-burning ovens from my childhood. I used to rub my hands and stand around them to get warm. My cousins and I would take turns doing so at my late grandparents’ home.

[brenda-denzler]

You’re right, Jen. My relationship with my father was complex. I’m still sorting it out. But I think I contributed something to his quality of life in his last 10 months, so I am satisfied at that. And despite the complexity of our relationship, I do miss him…mostly in the odd moments when a thought of him emerges from the side and surprises me.

Dusting? I usually do it like you. One room at a time. But it takes so long between dustings that I’m never done. The room I did first becomes dusty again before I get the last room finished. Don’t know how often I’ll be able to do it all at once. I’m having a lot of energy trouble. But if I get a sudden burst, I’ll be sure to put you on my list of places to go dust.

Speaking of which, that’s one of my favorite stories about Dad. When I was in grad school my folks came to visit. I was going out the door to class one day and Dad said, “Just a minute.” And he pointed to the dusty shelves and then said, “Is there any of this dust you want to save?” 🙂 And yes, when I came home that day my apartment had been dusted!

[Colleen Steele]

@brenda-denzler I love that story about your dad asking if any of the dust was to be saved! That is the kind of sense of humor my family has so the loving sarcasm made me smile!

[jen-cueva]

Hi @brenda-denzler, I’m grateful you can think back and be satisfied that you made a difference, especially in your dad’s last few months.

Yes, as you have found, dusting a little at a time, you never get done. I end up in that situation, too.

The dusting story you shared made me laugh. I think of my dad and know he would not worry about dust. But if we are driving and he hears a strange noise, etc, he is concerned about the cars. He’s always been a car guy. Thanks for sharing the dusting story. It sounds like something I would do to my daughter. Hehe.

[Colleen Steele]

@brenda-denzler I’m checking-in on you again. How are you doing?

[Colleen Steele]

Several members have been on my mind. If you feel like popping-in and updating us on how you are doing we would love to hear from you. @Vanessa Vaile @brenda-denzler @Jimi Mcintosh @Tracey @V.R. Peterson @Col @Dawn @Joanne Sperando

[brenda-denzler]

Not much going on. Chasing down some very, very high d-dimer lab results with a doctor who was willing to chase rather than just say they meant nothing. Had a PET/CT. Not multiple myeloma or lymphoma, it would appear. Might have thyroid cancer and/or cancer at base of tongue. Still sorting those out.

Got a head cold last weekend and found out that there isn’t much point using oxygen if you can’t breathe out of your nose AT ALL and it’s dripping snot all the time. !!! So for two nights no extra oxygen. What does everyone here do when your sinuses are all plugged and you literally cannot breathe through your nose, but you’re on oxygen through a cannula?

Mashed potatoes for Thanksgiving. ALWAYS mashed potatoes!!! Canned cranberry sauce is fine with me. But always mashed potatoes!

Going to my older son’s house and from there to their neighbor’s, who is having a big block T-Day feast. As long as I don’t have to cook, I’m good. 🙂

[Colleen Steele]

@brenda-denzler you tell us there isn’t much going on then drop the news that you might have thyroid cancer! I certainly hope not but we will be here for you if it turns out you do!

I suggest contacting your oxygen provider and asking if they can supply you with a mask. Cullen always preferred it over the canula. The downside is some of the oxygen escapes from it, but it would be better than nothing.

[brenda-denzler]

I prefer to avoid a mask if I can. But I also wasn’t sure that I could ask for a mask, so….. Thanks for the info. I’ll consider that next time this issue comes up.

[jen-cueva]

Oh wow, @brenda-denzler , so, how is “might have thyroid cancer” not much? I’m sorry you don’t yet have any solid answers. You chasing down all of this is frustrating yet draining, my PHriend. What’s the next appointment you have scheduled?

We are here and ready to support yopu in however you need us as you learn more, Brenda. 🤗

I use a mask when I’ve had lousy head colds like that. It’s not my favorite, but it’s better, especially if it’s been several nights, to use that mask instead of not getting any air at all with the nasal cannula. Hopefully, that head cold clears up soon.

Wow, a block Thanksgiving feat and no cooking? You won the Turkey Day lottery, my dear!

🦃

[brenda-denzler]

Colleen, I’m doing alright. Long, drawn-out saga about the nodules on my lungs. Successive scans had indicated that they were growing in size, and then growing in number a couple of years later. So a repeat scan was ordered and the radiologist said that the repeat scan was just like the scan in 2016, which was done BEFORE the two scans that showed the nodule growth. So…who do I believe? Hard to know. But I didn’t have to see my oncologist so she would pat my pointed head and tell me I’m just fine and I should quit worrying. Which relieved me a GREAT deal.

I’m preparing to give that same talk that I did last August to a different group in early April. In general it’s the same talk, but considerably editing and upgraded. Plus trying to write an article. Plus I have three editing jobs coming in. And taxes. Don’t forget taxes! Oy! So I’m kinda swamped at the moment.

I’d say that I’m probably feeling as well as I have in quite a while, in terms of energy. If I have to get up to do something that I forgot to do when I was up 30 seconds earlier, it’s not a terrible struggle for me. It didn’t used to be that way—it was a huge struggle. I’m having some chest tightness, and dry coughs, and what feels like episodes of racing heart. But it’s been happening at about the same time every day, so that rules out heart attack. Suspect a bit of reflux, but still trying to narrow things down.

Ice and snow coming in. I have a brand new generator, so if trees fall and knock out power lines, I hope I have power. I have never had to use it, yet, so this will be an adventure, if I have to use it.

Not much else to report. I hope that you are doing well, also. And everyone here……

[Colleen Steele]

@brenda-denzler thank you for the quick response! It’s nice to hear from you. Except for the nodules (which of course is no small thing) you sound like you are in a good place right now. Managing a balance between keeping busy and self-acceptance of what you can and cannot do isn’t easy but you are doing it! Last time, you shared a recording of your talk. I hope you will do that again! Stay warm and safe!

[jen-cueva]

Hi stranger, @brenda-denzler , it sounds like you are staying busy…and then some!

I’m sorry to hear about the nodules. It’s a positive that you don’t struggle as much to do things as before. Although I know this doesn’t take away from the dismissed symptoms and test results!

Thanks for the reminder about taxes. I haven’t even begun gathering my documents yet. I usually do that pretty early in the year, so I’ll work on it in early March.

Stay warm and cozy during snow storms, my friend. It sounds like you’re prepared with that brand-new generator. Stay safe, and remember to pop in and update us occasionally.

[Terese Tuohey]

Brenda, The CTEPH online Zoom group was just saying how much they missed seeing you. I’m glad you are finding your way, in spite of confilicting test results. Be well, and don’t give up!

[Colleen Steele]

@Terese Tuohey thank you for the nice message to Brenda. How are you doing?

[jen-cueva]

Hi sweet PHriend, @Terese Tuohey ! What an incredible thoughtful post to let @brenda-denzler know she was missed on the CTEPH Zoom call! I agree with you for her to take care and don’t give up!😘

I hope you and Tim are doing well!🤗

[brenda-denzler]

Thanks, Terese. 🙂 It’s nice to know that people miss me. I don’t join the meetings very often because I don’t have the CTEPH diagnosis and I feel like I should let the people who DO have that, have their space. But it’s nice to know that if I show up once in a while, it wouldn’t be inappropriate. Thanks. :>

[jen-cueva]

Hi @brenda-denzler , just like here, once a PHriend, you are always welcome! Hopefully, you know you are always welcome here. I hope you are taking care of yourself!

[Colleen Steele]

@brenda-denzler you have something to offer the forums because you have gone through the journey of searching for a diagnosis. Your experience can help people here and like @jen-cueva said, “Once a friend, always a friend!”