Today is brought to you by the number 53. What is the significance of 53? It is the number of days since I last finished IV antibiotics (7 weeks 5 days). As I updated in my last blog I grew out some new bacteria called Achromobacter xylosoxidans. I’m going to call it just ‘Achromobacter,’ from now on because that is a lot to type.
My nurse had called me to let me in on what I cultured and what they wanted to do which was……wait for it…… 2 oral antibiotics, Cipro 1 tab twice a day and Bactrim DS 2 tabs 3 times a day…OUCH! I could have had a mental break down because I know they don’t work for me anymore AND they wreak havoc on my gut. My wreaking havoc I mean, my stomach is in knots and is painful along with a side of nausea. I told them I would do it ‘their way’ right now this time but I’m sure I will be emailing or calling for a change. I slept ALL day Saturday and was only up long enough to do a treatment, force myself to eat something, take more medicine and back to bed. I did force myself out of the house on Sunday to run some errands because it was too nice of a day. I should say I only did 3 things and 2 of them had to be done by closing time which was 6pm and I left the house at 5:30, but I got them done. haha. On those errands I picked up the Shannonigan Cornhole Tournament Flyers and the letters asking for donations of any kind for local businesses and more, yay!
I emailed my nurse yesterday morning telling her I was beyond miserable and couldn’t do these 2 oral antibiotics for 2-3 weeks. There is NO way! She talked with the docs. They at least gave my part of what I wanted. I wanted off these 2 orals gone!! Looks as though little mister Achromobacter is a stubborn little thing and is only sensitive to Bactrim. Oh joy, lucky me. They did agree to decrees the does so it wasn’t so high. It was Bactrim DS 2 tabs three times a day….OUCH. At least I am free from one, the Cipro. That one is a tough one because you can’t take it with milk containing things and calcium or magnesium and other stuff. It is a complicated one. When they put me on that one I usually just quit taking my vitamins and Calcium because there is no way I am going to remember to space them out. The sad part is, you know I love me some cereal and yes I put milk in it. 😦 They have added IV Zosyn every 6 hours, yes Oscar is back in town. I have things I need to get done and want to get done so I really need to get better ASAP. Wishful thinking though.
I hate when I feel this miserable because I feel like my family suffers or at least doesn’t get to see me because I’m sleeping or laying in bed trying forget about the stomach pain. I try to sleep while they are gone and not when they are home if I can help it so I don’t feel like such a lump of useless flesh. I know my husband says, “babe you do what you have to. I want you better so if sleep is what it takes then do it.” That doesn’t change the fact that I actually want to spend time with him since he is working 7 days a week right now.
I accessed my new power port (we shall name her Polly the Purple Power Port…haha) for the first time tonight. It was easy peasy. I did my first dose of IV Zosyn last night and now have 3 under my belt with 53 left for 14 day course, that is if I don’t go 21 days like I usually do. Who knows maybe I will do the 14 days and be IV free for when we are at Barnes for the transplant evaluation. I know what will most likely happen though because it happens almost every time I do only 14 days….I end up on 3 MORE weeks of IVs. Prime example: I did 14 days of IVs before our wedding (6 years ago this month) and finished the day before the wedding so I would be good to go/IV free and able to enjoy the sun, sand and ocean for our honeymoon in Hawaii. I did not feel good most of the time in Hawaii but I faked it and still had fun. I believe it was 2 or 3 days after getting back, I was in the hospital and back on IVs for another 3 weeks. I hope and pray that these make me feel better.
Oh yeah, I believe the injections in my back have actually helped my rib pain!!! Of course I had to get over the pain and soreness of the injections and from coughing. Now my body just hurts all over because I don’t feel good and I’m sick. I told my husband last night that if I still feel like this on Saturday I’m not going to be happy. We have tickets to the TN Smokies minor league baseball game. It’s military appreciation day. We really like going to them because it’s a small venue and good baseball.
HERE ARE A FEW REMINDERS:
KANSAS CITY FRIENDS AND FAMILY – TEXAS HOLD’EM FUNDRAISER: Tuesday, May 24th 6pm: There is a Texas Hold’em fundraiser in my moms memory which is to raise fund for the Shannonigans Lung Fund at Tanners located at 12906 W 87th St Pkwy, Lenexa, KS 66215. For more information please visit the FB event at Texas Hold’em Fundraiser
SHANNONIGANS GEAR ONLINE SALE: 19 days left to get your order in. Don’t forget! Don’t put it off! Write yourself a note or put a reminder in your phone. We need as many sales as we can possibly get! There are 6 different types of shirts/hoodie to choose from. PLEASE help is spread CF Awareness. Go here Shannonigans Gear Online Sale to put your order in and then share with all of your friends and family!!!
TENNESSEE FRIENDS AND FAMILY – SHANNONIGANS CORNHOLE TOURNAMENT: Saturday, September 17th @ 2pm: Mark your calendars NOW for this great event. It was a success last year and we plan for it to get bigger every year that we are able to do it. Of course there will be lots of cornhole played, baskets stuffed with lots of fun stuff to raffle off and the biggest item of all….custom set of cornhole boards!!! You can go to Shannonigans Cornhole Tournament Facebook page to get more info or you can always message me!
Until next time…