And it starts! Supplies finally arrived.

Supplies came FINALLY!! I will do a full update and info blog tomorrow about how everything is done. I wanted to do my dressing change video but it’s too late and I was over my initial 24hrs!!! It will need done in 7 days. So not this last time I was on homecare but the time before when we still lived in the city and I had my final fuck this moment, I taught David (my husband) how to do it when it needed fixed! I allow him to do it for numerous reasons:

  1. As stated above, my experience with home nurses and their inability to properly change and place a new dressing is beyond my patience level at this point in my life. Too many horror stories or needing to redo it immediately after because they don’t listen than I care to count.
  2. He has been tattooing for over 25yrs. He’s blood born pathogen certified and because of that he understands the IMPORTANCE of needing things to be and remain sterile.
  3. I haven’t found anything this man cannot do! Having had so my picc lines, I could do it myself if it truly came down to it. So I knew explaining things step by step through the entire process he could handle it and I trust him with my life.

I now have a fresh clean dressing and I can start my meds at 11pm. Yes I am still in pain but I am managing it, sorta. See everyone tomorrow morning for a full update. 💜

Late blog ….shit happens!

Happy Friday, I normally would be dropping a new blog right now. But today I have been coughing so much I pulled a muscle. So I’m laid up in bed thriving in pain. Send help and cough syrup!!! Possibly snacks too if I could sit up long enough to enjoy them! Ugh! But, this is our reality as chronically ill people. We never know what the day will bring. I had all kinds of plans when I got home at 5pm today. Finish recording my blog and finish up med organization during it. Then can some more things out of my garden. That idea went over as well as baptizing a cat! So here I am telling you that I will be late again. Consistency is one thing all Cystic Fibrosis patients strive for and sometimes we nail it. Other times we slam a wall at 100mph (figuratively speaking). Happy Friday and I hope you have a great weekend. New blog coming soon I promise.

Preview to Supplies Organization Blog

Guess who was supposed to get this excerpt dropped last night? Raises hand Unfortunately I do not have a legitimate reason this time, only that time simply slipped away from me. It happens I’m only human, and consistency is a huge goal. The only thing I’m consistent at right now is being a mom and wife. I can’t say it’s because of laziness. I can say it’s because I am a busy working mom/wife with a chronic illness and life happens. And sometimes it’s because of spontaneous decisions to enjoy some fun with friends. I’d rather have that excuse any day of the week over laziness or a hospital stay.

Anyway, this week we are gonna talk about medication organization. I wanted to drop a small taste about why it’s important, how to become more consistent with it and I’ll be doing this blog with a video. It’s very easy for an adult CF patients meds to get in total disarray for many reasons. Especially if we are busy or not feeling good. At some point all of us have gone through a non compliance phase and when you are busy like myself it’s easy to forget something once or twice a week. Nobody and I mean nobody is 100% compliant 365 days a year. I will address this in another blog. Because of this, over time we develop a stockpile which adds to the mountain of supplies we already have. It’s important for our own sanity, the sanity of the people we live with and to keep track of our supplies to keep things as organized as possible. Right now once a month I seriously revamp my medication, go through everything and rotate based on expiration. I will show you all of this in my vlog. I will also have tips to keep it as organized as humanly possible in between. I’m finding right before refills are due is working for me.
Catch me Friday, the 23rd when we dig deeper into this topic.

The loss of a Grandmother

Last month I lost my only living Grandmother. I will never be able to get that day out of my head. See, she lived about a 20 second drive from me. I loved the fact that we were so close to each other again. Rhiannon and I were headed home after tumbling class and as I was about to go by her house and ambulance was turning around to pull in. I sped through 3 neighbors yards almost hitting a mailbox and left tire tracks in my grandparents yard. Which I’m pretty sure my grandmother is pissed about in Heaven. LOL! I mowed over a couple EMT’s to get in the house and I will never get that sight out of my head for the rest of my days. The sight of my grandmother lifeless on the floor. They worked on her for 30 minutes but she was gone. The tears and panic had set in. When the funeral home arrived to get her, I hyperventilated and I don’t remember much after that. I have been very blessed in my life to have more than two Grandma’s because of extended family. She was all I had left though. In the last 7 years before her I have buried two Grandmothers, a Grandfather, my cousin, my aunt and a second mom. I can’t even begin to put into words the level of heartbreak my family has experienced.

A Grandmother is a treasure that can never be replaced. And boy was she something special. My entire life she was there for me especially when they found out I have Cystic Fibrosis at age 3. She had rarely missed an appointment with me since that day. And if she did, I got a phone call to ask how it went. Actually I got lots of phone calls from her no matter what. Like 10 a day most of the time. To ask how I am feeling, if I am doing my treatments, to yell at me if I’m not, ask me for help with something. The best calls were to tell me she made cornbread and to come get a piece. That was the best part of being close to her again. I got to see her so much in the last 1.5 years since moving. My phone hasn’t rang 10 times a day since July 24th. I catch myself wanting to call her to tell her I want cornbread or to let her know I actually got all my treatments in that day. But I can’t, and it sucks.

She was the matriarch of our family, an angel walking this earth and a force to be reckoned with at the same time. I learned so much from her and I have her to thank for my faith in our Lord. I grew up in church and I can’t think of one Sunday she missed. If she did, I could probably count it on less than one hand in all of my 36 years on this planet. Unless she was camping, that didn’t count! She loved camping. I don’t go to church as much as I should anymore. Mostly because I am a busy mom. I kind of regret not going with her on Sundays since moving. But I know she was never mad at me for it. I never missed Holiday dinner at church though, every Christmas and Easter. If something good happened you bet she was praising the lord. Even if it meant a good parking spot for Hopkins trips. She taught me how to pray, to pray for everyone and to always have faith no matter what we go through in this life.

Remember how I said she was a force to be reckoned with? If you pissed her off, man you would know it in a hot second. She was the mother of 5 girls, she ran a tight ship in her household. But it was a household filled with love, laughter and family was most important. In my younger years I can remember she was never really good at taking jokes. Lord knows my family has no filter. In the last several years though she became very light hearted and you could crack the most ridiculous joke and she would laugh! I loved that! I loved that I could make jokes about stopping at the strip club or bar after a Hopkins appointment, or tell her she needs to wear some booty shorts for Pop! She was very modest but she would laugh. Just don’t swear. I got yelled at sooooooooooooooooooo many times for dropping F bombs in front of her. I can hear it now…..JESSI, WATCH YOUR MOUTH! Whoops, sorry Grandma! LOL! I think I have only heard her swear a handful of times over my life and I almost pissed myself laughing or I’d be in total shock every time she did.

I have so many memories of her and stories that will last a lifetime. Endless pictures that I will cherish forever. Life will never be the same without her. But we must carry on because she wouldn’t want anyone to fuss over her. I miss her so much, her smile, her calls, her laugh, hell her yelling at someone! Most of all I miss her hugs. I know this blog has been all over the place and not really that thought out or put together. But it was never really meant to be. It was to tell you how special my Grandma was and if that meant rambling on and on so be it. I could probably keep going, but the tears are flowing and I need to get some rest. She is probably yelling at me right now from Heaven to do my meds and go to sleep before I end up in the hospital. Yup, I know that is exactly what she is doing. I love you Grandma ❤ You are my guardian angel now and will walk the rest of my days with me. I promise to keep Pop in line for you and to make him cornbread like yours.