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@jenc, I live quite far from SLC. Depending on traffic and road construction, it can take anywhere from 2 to 4 hours for the drive.

Hi @ripple76, again, I am so sorry to hear about your friend’s passing. I can bet, as Colleen says, that you helped him more than you know. It is unfortunate; he did not make it to see the PH specialist.

Losing our PHriends can often cause a lot of heartache and grief. We are always here and want to support you. I am hopeful that you can lean o…[Read more]

Yay, I am so happy that you and Aidan are both feeling much better and ready for this trip.

You have been waiting for so long, and this is much needed and well-deserved, my friend.

Please know that I am praying for your safe travels and an awesome visit with your folks. That must be so exciting, almost surreal after so long.

Do not worry…[Read more]

This weekend, I had a goal to get into the pool. Thanks to my hubby, Manny, who wasn’t feeling his best. He carried my home oxygen concentrator to the patio. It has a long extension to go through the house.

I moved a bit in the water, which I enjoy. Plus, I floated around on my float with my oxygen. That made it perfect for me to reach the pool.…[Read more]

Well said, @mamabear007. This forum is a safe place to offer our opinions and respect one another, regardless of our own thoughts.

I hate that you have seen such hatred from others. It is sad.

On another note, I don’t know how far you are from Salt Lake City, but my kiddos were through there this weekend and enjoyed a
nice hike. The pictures…[Read more]

Hi @cdvol3gmail-com, I know that you will listen to your body. You do an awesome job of this, I must say. You have had a ton of experience with PH and scleroderma do long. You are a true warrior.

How are things going for ya this week? Are you seeing the ostomy nurse that you like this week?

Thinking of you as you are recovering. I am sending…[Read more]

Hi @valeriekv, you are too kind. The funny thing is that I think of you all as PHighters. Y’all continue to PHight through each new day while supporting one another.

Like you, the heat tends to exhaust me quickly. I am happy that you know that you need to stop and take breaks.

You mention, “I constantly remind myself how harmful it is for the…[Read more]

Thank you, everybody, for your support. I do feel safe here, which is why I felt comfortable sharing such a sensitive subject. I wish you all health and happiness (which is an odd wish, considering why this forum is here — nevertheless, I wish it for you all).

Hey Jen, thanks for your encouragement! Yes, I will listen to my body and go slow. Lots of w a rm hugs coming your way!

Jen,
Thank you, I’m fine. I’m tired of the heat, which makes me stop often and rest a lot, but in general I’m fine. As for stress, now I constantly remind myself how harmful it is for the immune system to be nervous a lot.
You and Colleen, you’ve been through so much lately. I consider you real fighters! I hope that everything will be fine for…[Read more]

Hi @cdvol3gmail-com, I am s grateful that you are noticing some improvements in your quality o life, although recovery has just begun.

You are one tough coffee and living on SubQ for years; I have n doubts that you will recover and see even more improvements in your QoL.

Please don’t overdo it with your exercises and brief walks as you help. I…[Read more]

Hi @terry, thanks for adding to the discussion and sharing the updates in your area.

It is confusing and frustrating, to say the least. The media certainly tends to do what they want, not taking into consideration how others may react. I tend to limit my news and only read accredited sources. But these, too, have uncertainties as these new…[Read more]

So very sad, @mamabear007; I hate that so many are turning to hate. This should be a time to stock together, who staying apart, lol.

Like, you, doing as my PH team suggests ad not being vaccinated, I feel like I am being blamed. So many are blaming the unvaccinated for this new variant.

As@cdvol3gmail-com says, maybe our step in the right…[Read more]

Hi @cdvol3gmail-com, I agree with you about checking with your PH team and cardiologist.

Yes, masks are still common in our house, too. I had been to get groceries like twice before starting back to ordering pick up and delivery. I limit my exposure again.

Stay safe.

Thank you for asking Colleen. Recovery is slow, but that may be normal. As prepared as I thought I was, I am overwhelmed and anxious.

I know in my head this is a process, it will take 6-12 weeks, I will get ues to it and it will just become one more routine. I am hoping for 6 weeks!

The quality of my life already is better I am able to take…[Read more]

@mamabear007 I’m afraid that Covid has brought out the bad side in some people. My family is still wearing masks with no plan of stopping any time soon. I’ve noticed weird looks from non-maskers when I’m wearing mine. You have me wondering if they are making assumptions that I’m masked because I’m not vaccinated.

Just do what you need to do…and…[Read more]