Well first of all my side pain is gone! It could have been GI (intestines) related because I did a “clean out” just in case and it seemed to help the pain. It didn’t take it away but it was less. What’s a “clean out” and why did I do it? A “clean out” is when I drink lots of miralax to get the poo moving in case there was a blockage starting. If a blockage gets bad enough it can require surgery. No thank you! So all is well in that area now, thankfully. Continue reading
I have been on a bit of a whirlwind road trip. I started off my road trip visiting my friend that lives outside of Chicago for a few days. Next up was the drive to St. Louis for my transplant clinic check up. My check up was good. They drew 14 vials of blood, took a chest X-ray and I saw the doctor. I’m doing well, sounded good. I didn’t have to do lung functions because I was able to send my last ones I did at my clinic. I am scheduled to come back in 6 months.
The last bit of my road trip was heading east to Kansas City to see my family for a few days. I will then head back home on Monday. All in all it was a good check up and has been a good road trip, except for the boring driving part. Haha
Until next time…
WOW! We had a great tournament that raised $1,508!!!! I’m amazed at the turn out once again. We have great friends that offer great support. We appreciate it very much, it means the world to us. Continue reading
I called my nurse today and asked for the obligatory 3rd week of IVs. 14 days never seems to get me over the hump. Although, I would love to be needle free tomorrow, that will have to wait another 7 days. Continue reading
When you have a chronic illness waiting is part of life. Waiting to get better, waiting/holding steady or waiting to die. Yep, I said it. It’s a part of my reality and when I have friends waiting for lungs and others who are not candidates for transplant or don’t want to go that route who are basically waiting to die. Maybe you could call it “living to die.” Whatever it may be, it is life. Continue reading
This is what a $500 battery for my POC (portable oxygen concentrator) looks like. Yep $500!!!! I have to have 2 of these for the trip to Hawaii. Per FAA regulations, you have to have 150% of battery life compared to your flight/layover time. I had to be approved by Delta to fly with my oxygen. Then they dropped the bomb that I needed 2 double batteries (a total of $1,000) OR a double battery and 2 single batteries ($500 + ($325×2) = $1,150). One double battery gives me about 8-8.5 hours at 2 liters. One single battery (which is what came with my POC) gives about 4-4.5 hours of 2 liters. Thank you to everyone who donated to the lung fund for allowing us the means to buy $1,000 worth of freaking batteries.
If you would like to donate we would greatly appreciated it.
Thank you to you all for all of your love and support!!
Until next time….
I managed to get myself up and out the door for 2 doctor appointments. I had a very hard day yesterday, emotionally and physically. I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc. Physical symptoms are non productive cough which sucks. I can’t sleep for more than an hour at a time it seems. I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading
I hope I can write this and let it make sense because it is all jumbled in my head…. It feels like a game of ping pong with my thoughts in my head. Hmmmm let me divide it into topics….hahahaha Continue reading
I received an article via email titled “Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis.” The first line of the article is the following, “Cystic Fibrosis (CF) is a life shortening disease, however prognosis has improved and the adults with cystic fibrosis live independent lives and balance the demands of work and family life with a significant treatment burden. They administered 3 standardized questionnaires to 67 CF patients aged 18-30 years; Medication Adherence Scale, Major Depression Inventory and CF Questionnaire. One third of the participants reported systems of depression. Health-related quality of life scores were especially low on vitality and treatment burden and symptoms of depression were associated with low health-related quality of life. High depression symptoms scores were associated with low adherence. All of that mumbo jumbo means that depression and CF go hand in hand. The higher the rate of depression, the lower rate of adherence of treatments and meds, etc. and vice versa. Continue reading