What is on your medical calendar for July?

[Community Member]

How is everyone doing this month? Have you had any appointments or one coming up that you would like to discuss?

[Community Member]

@carol-volckmann Thank you for the update, although I wish it were better news! I am sharing it here to make sure all of our members find it.

Update from Carol: Hello Colleen, I have not been feeling great. My shortness of breath has gotten worse. Trying to do my daily walks is difficult in warm weather, so I don’t go as often nor as long.

I will be seeing my Rheumatologist next week for my Sclaraderma and the week after my Gastroenterologist. My bloating has not improved after all the different meds and over the counter stuff – nothing has worked.

I also am unable to sleep . I wake every hour so a I have been unable to get deep sleep. Again I have tried everything prescription, non prescription and all the reconmmends of good habits etc.

My system just does not react to meds for sleep or bloating. Maybe I need a pin and pop my tummy and a bat to hit me over the head to sleep !

That’s about it for this month .

[Community Member]

@carol-volckmann I am so sorry to hear that you have not been well. I’m sure the heat isn’t helping any! Lack of sleep is also a heavy brick to add to the pile of complications you are carrying. Is there anything I can do to help you?

My husband bought me a heated eye massager many Christmases ago. I thought he was crazy because it looked like something from science fiction. He thought it would help my migraines. It did, but also helped me fall asleep. I was quite surprised by that. Just in case you might be interested, here is a link to the one he bought me, which I still use. You can also search for eye massagers at Amazon, and you will see newer ones on the market now.

Eye Massager

[Community Member]

@carol-volckmann How are you feeling? Is your doctor trying anything new to help you?

[Community Member]

Thank you Colleen for asking. I saw my Rheumatologist yesterday and he is trying to figure out why nothing has worked to reduce my severe bloating. He wants me to have an MRI of the wall of my bowel to see if there is thickening. I am trying to schedule that. He keeps thinking out of the box. That is why we both like him.

I see our Cardiologist next week. Just keep on trecking and moving forward.

I hope all is going well for you this summer and that you are up to date on all your follow-ups 🤔.

Have a wonderful and relaxing 😌 weekend. Sending cool hugs with lots of love ❤️.

[Community Member]

@carol-volckmann It means everything to have a doctor you trust!

You mention your cardiologist. How is your heart doing? Is there any possiblity your heart is contributing to the bloating/distension? When was your last right heart cath? I realize you have other health problems that cause your stomach issues but sometimes conditions can collide making treatment that much more difficult.

You remain in my thoughts and prayers!

[Community Member]

Colleen you are so sweet and caring. You also keep me on my toes with your follow up questions – I love you for it!

I did see my Cardiologist yesterday. Pretty much had a positive visit. My last echovand RHC all show my PAH and heart issues are pretty much stable. That is the good news.

My other contributory issues i.e. Sclaraderma still effects everything, liver, heart, lungs, kidneys etc and though it is pretty stable also, it still shows up for my bloating, bleeds, fatigue, poor sleep. I just have to say ‘okay, we are just going to keep on going and do as much as we can …’

I actually feel good in so many ways. Thank you again Colleen for your continuing care and support, it means so much ❤️. Big warm hugs.

[Community Member]

You have a lot on your plate @carol-volckmann . You remain in my prayers! Any plans for the weekend?

[Community Member]

Hi @carol-volckmann , I am sorry to hear about the current struggles you are facing lately especially regarding your ability to breath. I know this can at times feel especially discouraging especially when it impacts our daily activities or other activities we enjoy doing.

With that being said as you mentioned the change of weather can often have a heavy impact on not only how you feel but how well you are able to breathe or how well you can participate in tasks. For example after my transplant as the weather becomes colder this can often cause my body to ache for a while which means I need to slow down on some of my normal tasks as I adjust.

I am happy to see that you are still getting out and enjoying the things you like to do even if its in a smaller amount. It’s important to remember that although we may be hindered by our Chronic illness, we should not let it stop us from living life entirely.

[Community Member]

Thank you Cullen for your insights and support. Absolutely we need to just keep going.

You have gone through so much beginning at such a young age. You truly are an inspiration.

Thank you again for reaching out. Always my very best and warm wishes.