Brian Gilbert

Colleen,
I am definitely similar in how I handle things. I need to come to my own conclusions about a lot and can’t feel like I am being forced into something or that I don’t have control over a situation. Feeling out of control of my own body is a big trigger for me mentally and physically and it really sends all of my emotions into overdrive. I…[Read more]

Hey Donna!
Funny that you say this ! I actually get hot flashes from being in menopause. Yes, I am in menopause and went into menopause at 27 years old. I have a condition that I was born with that caused my reproductive system to be scarred and as I got older I had my tubes and ovaries removed. All was removed last year at 27. I am in menopause…[Read more]

Sarah,
The pie with the caramel candies sounds to die for!!! I would love that. I am a huge pie and caramel fan, even though I know I shouldn’t be eating much of it because it would most likely make my digestive system feel pretty sick. I stuck to making no bake pies this year with coop whip and cream cheese as the base. It is just made with cool…[Read more]

Hi Mary,
I am so glad that you have joined us on the forums and I am already learning so much from you and hearing your story. I have also never heard of that condition but it makes sense as to why you are having an increase in bleeding when that happens. As Colleen said, I’m sure that some of the medications and therapies and even the oxygen…[Read more]

Hey Colleen,
All I can say is THANK GOD FOR AMAZON ! LOL I got all of my shopping done online (with the exception of my boyfriend’s gift) It is a big gift for him so it is not something that I would have wanted shipped. He never comes on these forums so I will tell you what it is. I got him a 75 inch flat screen TV !! He will be SOOO EXCITED.…[Read more]

Hi Mary,
Wow it really sounds like you hit the “jackpot” of medical conditions. I really hope that the medical team will be a help to you in answering some of these questions because everyone is different. I think it would also be best to talk with those that have received transplants here on the forums and to the ones that have been through the…[Read more]

Hi Tamara,
I also had bradycardia. Are they doing anything for yours? Are you experiencing symptoms when your heart rate gets really low? I remember before I had my pacemaker placed for my bradycardia, I was passing out pretty frequently and would get really dizzy. It also started to impact my blood pressure and it was getting really low which…[Read more]

Beth,
Thank you so much for sharing all of this. I am sure that many can relate to what you are going through and have been through, especially with trying to get off certain medications like opiates and benzos. That is such a difficult combination to be on too and when mixed together can have serious effects on respiration and breathing. I also…[Read more]

Valerie,
wow I am sorry that you had to experience nose bleeds so severe like that to the point where you needed and ambulance and hospital to help stop the bleeding. I am glad that they were able to get things under control. That must have been a huge source of anxiety for you too, especially if it was something that was so unpredictable. I can…[Read more]

Hi Beth,
For the feeding tube there are a few thing going on with my GI system currently. I had a major open heart surgery through thoracotomy in May of this past year. For 28 years of my life I had severe compression of my esophogus caused by a congenital heart defect called a vascular ring that was causing compression of my trachea and…[Read more]

Hey Jen,
So lucky that your doctors and medical team are taking action to catch things as soon as possible and take those preventative and pro active approaches to your care. That is so important for those of us with chronic illness! I’m sure those monthtly labs at the hospital will feel more routine eventually , especially knowing and…[Read more]

Beth,
Wow, thank you for sharing that. It is amazing hiw you were able to physically get through that period of your life when your body was withdrawing from the medication. As someone who has been taking pain medication for the past year due to very severe pain with tube feeding, I know what you mean by your body being dependent on them after…[Read more]

Beth,
That is a really good strategy to be held accountable. I also do something similar and will make a promise to others if I feel like I can’t do it for myself out of fear, anxiety, etc. It helps to have that other person know your struggling with it too so they can be there for support in any way they can.

Beth,
So so true ! Do you also read any of the columns ? I will have to find a direct link but in my column for PH News, I write a column called “Recharged and Rewired” many of my topics talk about mental health including anxiety, depression, and PTSD. These are to me, all side effects of living life with a chronic illness and it can feel…[Read more]

Hey Colleen,
Yes!!! Especially this time of year with it being a lot dryer and cold here in New England. The oxygen also doesn’t help because it dries up the nose even more which leads to the nose bleeds for me. I was getting them more frequently a few days ago especially because my nose was cracking from the weather. I have used creams and…[Read more]