Brian Gilbert

@colleensteele wearing a mask honestly is really hard for me. It makes it harder to breathe and the hot air from my breath just comes right back into my face. I sweat pretty easily too and my face and around my mouth starts to get that damp feeling from the air that I’m breathing out into the mask. I get chapped on my face sometimes from it too…[Read more]

@dawnt thank you so much! I appreciate all of your wishes and love that you have been following the forums for a little bit. I am sure you are familiar with some of the medical dramas that I post about then. One of my co-workers calls it my “body wars” and she couldn’t be more accurate LOL we all have our own versions of body wars I’m sure. But, I…[Read more]

@dawnt and @jenc I completely understand what you mean when you say that you didn’t think you really went out much before until all of this happened. I am used to being home a majority of the day anyways, like you, Jen. But, with not being able to do something as simple as going to the grocery store or running to the convenient store across the…[Read more]

@colleensteele I don’t really have any when it comes to medical things. But, my boyfriend kept a wall of the guest badges that they printed out for him whenever he would visit me in the hospital LOL he just stuck them to his old wall at his mom’s house. It was actually kind of funny. I usually just cut my wrist band off the second I come back from…[Read more]

@joyce-sandberg it seems like you are balancing a lot of medications and management of treatment. How do you keep track of all of this that you’re taking and how do you monitor side effects? I know this part of chronic illness can be a challenge.

@douglas-knuth thank you so much. I am doing the best I can considering the changes that have been going on with my nutrition plan, seeing a nurse a few times a week, trying to still work from home and juggle all my health pretty much on my own. It has been stressful and a lot to take in last week, but towards the end of the week I started feeling…[Read more]

@jenc that’s so great that your kids stopped by to see you ! Even if it was within distance limits. I always love seeing my nephew and my family. yesterday we had a fire (we are all socially distanced from each other) but it was nice to just be outside and have each other around. My dad stayed even further away from all of us because he works with…[Read more]

@nancy-mcsweeney I am really glad that your nurses seem to be on top of all of this. Does your nurse come to your house too or do they just do check ins and updates over the phone or telehealth?

@colleensteele I consider going for drives to get coffee on Sunday morning or over the weekend and just driving with my bf to do this to be one of the highlights of my week. All (almost all) of the coffee shops and chain shops near me are still open. I try to go to the local bakeries to support local business but many of them are closed. I…[Read more]

@jenc Doc Britt at your service here ! hahahah! I should have gone into health policy or something in college, I would have loved it. It’s so true though that so much of our focus is on how can we make money and how can we continue working. I am guilty of this myself, as you know and usually have to be reminded or forced to slow down and take a…[Read more]

@colleensteele even if you were hoarding oxygen tanks, I wouldn’t blame you at all! It is way better to be over prepared for emergency situations than being under-prepared (hence this pandemic going on!) So, you collect all those oxygen tanks you need LOL Even though I know you don’t need them anymore. Sometimes when they come to pick up my…[Read more]

@colleensteele I haven’t heard that about the glasses. I feel like I have a sensitivity issue to feeling things on my face. Masks are one of them and really are hard for me to keep on and wear. I have been trying to avoid direct contact or close contact with people but sometimes it’s not possible. I wear a mask when I go out and if I go out in a…[Read more]

Hi Libby,

it seems like you had a really similar test to the one that I had done. They also put blood pressure cuffs in placed I didn’t know you could put one! I think this was checking with the blood return and nervous system related issues like POTS that could also contribute to the blue skin if the blood isn’t circulating properly because of…[Read more]

@douglas-knuth funny that you bring up the alcohol wipe smell. I actually like the smell of rubbing alcohol and I really like the smell of the wipes. I have been doing my own flushes in the PICC line and giving myself nutrition through it so I need to keep things as sterile as possible. Now, when I open up the new wipes I just HAVE TO smell it and…[Read more]

@carol-alexander try to give yourself some grace here. I know it is so easy to place blame on ourselves thinking “we should have known” and think about all the things that we should have done differently if we could. But, we can only take what we have learned to help us move forward. At least that’s what I try to do. Sure, there are days when I…[Read more]

@colleensteele I also always try to be understanding of where the doctors are coming from. Even though it seems like there has been so much delay in between with my care. I know that this is something that a lot of doctors are new at treating. It’s hard when they don’t really have a lost of cases to compare it to so sometimes it can feel like they…[Read more]

@jenc absolutely !! Kids NEED to stay home if they are sick. I don’t think it should be just for a fever either. Someone’s cough could be someone’s life or death situation. When I was a teacher I saw this firsthand and ended up extremely sick from someone coming to school too soon after they had the stomach bug. Well, someone’s “Stomach virus”…[Read more]

@colleensteele I definitely can understand what Cullen is going through right now. I have been sort of in a funk off and on this week too. I feel like everything is just “new” right now. It’s a whole new way of living that we are unfortunately kind of getting used to. That’s a big change, not having appointments is a change, starting a new…[Read more]