Hanging in there

I finished IVs on Friday morning.  It was a long 10 days of a 2 hour infusion every 8 hours.  That’s 60 hours being hooked up to “the pole” in the 10 days, which doesn’t include all the breathing treatments, pills and time hooked up to oxygen.  Yes, taking care of myself is a full time job.  It is tiring at times and annoying most of the time.  I do try and look at treatment time as a positive thing.  It is sustaining my life and I get to update you all on this here blog while doing my treatments along with trolling Facebook.

I have been sharing CF facts on my Facebook and Instagram pages since it is CF Awareness Month.  I don’t know why I haven’t been doing that here….hmmm.  Maybe because that would be a lot of updates you would be receiving….haha.  I’ll just say if you have any questions about my journey with CF or CF in general just ask me.  CF can be very complex and has a lot of different areas of the body that it affects besides the lungs.  The pancreas and liver being 2 of the organs it can affect, along with many other things.

Sunday was Mother’s Day which is a hard day for me ever since 2016 when my mom passed away.  I spent a lot of the day in bed not in the mood to do much.  Isn’t depression lovely.  NOT!  I had what I call a “blah day.”  I have “blah emotional days” and “blah physical days.”  Sometimes the physical blah days roll into the mental blah days, of course.  I try to do my best at keeping up the fight.  Some days it is hard to do but there’s always tomorrow.

I still have the pulled muscle in my chest from coughing.  Coughing hurts like hell and so do deep breaths.  I’m doing a lot of shallow breathing at times in hopes that it will not hurt as bad.  Nothing I have in my arsenal of meds is helping so I just endure.  It’s been about 5 weeks with the unforgiving pain.  Luckily my cough isn’t as bad as it was, at the moment, so that helps.  But when I do cough I try to brace myself but that doesn’t work either.  It just plain hurts!!!  Anyway enough of that fun topic.

I have transplant clinic and other appointments next week.  I will update after my appointments to fill you all in on what was said.

Don’t forget about the new transplant fundraising link I shared,   www.COTAforShannonM.com  All of your donations are tax deductible and COTA doesn’t keep any of the money donated (like with a GoFundMe), it all goes towards my cause.  Thank you to everyone that has already donated.  It means the world to us.  Money donated will help cover housing for the 3 months (min) we are in St. Louis, bills to keep our TN home a float, food, medicine copays, medical bills and much more.  If you have a fundraising idea let me know.  If you want to do a fundraiser yourself then donate the proceeds that’s even better!

Fundraising is hard because we live in TN, majority of our family and growing up friends live back in KS and MO.  We used to have a big pool of folks here in TN but since my husband retired from the Air Force we don’t have that military connection like we used to.  We do however have many friends all over thanks to the military.  Which is why we need help spreading the word and donations from all over.  Someone could put on a 5K race on a base and that would be a great fundraiser.  We did a corn hole tournament 2 years in a row and it was a great fundraiser but a lot of “our people” have moved (PCSd) away so we wouldn’t be able to do it like we did.  We also did a Singo day fundraiser that was a great one as well.  But once again this all was before my husband retired and had the bases help.  So what it boils down to is, we need donations from all over or for people to do their own fundraisers and then donate the proceeds.  I hate asking for help, it’s humbling.  I am humbled every time someone donates, no matter the amount…Small amounts add up.  It just shows me that people have taken time out of their busy lives to think of us and what a blessing it is.  Sorry for the ramble.

Until next time…

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