Laser

So this week as I stated in the last post, I was lent a laser that my friend swears by (I am leaving her anonymous because I do not know how much she wants me to put out there)  but everything I drink is lasered, and most food and meds I take are lasered to. And though I have plaid with one of these before and new going in what they could do I didn't expect this to be so powerful.

I followed her directions of use with and then I got put on a few harsh medications. Some that leave my exhausted and lying in bed unable to move from share side effects, let alone the awful side effects of prednisone. Though it has gotten the best of me, and I have been asked several times if im ok because im just trying to keep it together this round hasn't been all that bad. I say this knowing all this could lead to an admittance if my PFs dont budge.

So as I sit here not feeling as bad as I should, and my strong team behind me, as we are trying to figure out if we have, damage, swelling, or infection. I am working incredibly hard to stay home for the most trivial reasons. I also have a tattoo to care for, so I began the journey of lasering everything. Not only did I spill it everywhere I began to notice a positive difference in how my body is handling this round of stress.

My tattoo is still in the ouchie dont touch it healing stage, still a bit swelled, my pants dont fit (is this what normal people feel like??) and its already starting to peel which is amazing, very few tattoos have I ever had heal this fast, I do not have the crippling side effects of doxi, a lot of the issues with my steroids aren't terrible, and I really just dont feel all that sick. But here I am fighting numbers and being defined by them, which I have a feeling thats what life is about. Numbers.

Also Rubes the Cat has been getting a bit of treatment with the laser to, not as much as me, but her anxiety seems to be ok and her hair is growing back in. If you dont know she ripped out all of her hair when I got an iron infusion because I was sitting here on my bed fighting for air in my lungs. So all in all a good improvement.

Just a quick laser update for now,
Love Y'all
~Poppet 

Lungs

Someone in this house has been sick, and I called Superman who never got the message so I figured eh didn't need the meds, turns out he didn't get the message and I had a scheduled appointment anyways so I just waited to see him and even got my tattoo in a location my pants wouldn't bother it, thinking I was prepared. Then I got hit with my very harsh reality. Just because I what I consider OK, doesn't mean I am.

I felt well enough to get my tattoo, I even made plans for this weekend, but the reality living with this disease is my life isn't always what it seems. My numbers are bad, by bad means I have 2 more days to feel better or well for my numbers to improve and they havent budged, everything is low, my oxygen is on four, and im fighting to stay home. And at this point I am not sure if it'll happen, im an exhausted mess, I am on a ton of meds, and I am doing homeopathic work as well. Thats rights one does not out way the other, they both have an equal purpose in my life.

You guessed it my reality is I have a lung infection, my reality is its really hard to fight off this infection because of my immune system and alls I want to do is sit and cry, just stare at the screen and cry, but thats not a good option either. Its just so frustrating to know that I feel ok but the reality is deep inside of my body theres a war raging in my lungs and they are currently winning. I cant have this be my last major infection. I cant have this be my "we need new lungs" I just need everything to work out. But the reality all of this is out of my control. I am doing everything I need to be and should be doing. Thats all I can do.

I often will tell you CF isn't the worse thing that can happen to me, and I truly believe that, its people who dont listen to me, and dont act that are the worse thing. No I am not blaming this on anyone, its simply my body that can't fight off infection. Something as little as someone having a cold in the same proximity as me can cause all of this. What someones body can fight off mine can't. This is just the body I was giving. As much as we fight to keep my lungs under control, the progression of my disease is going to happen. No one wants to hear that but thats the unfortunate reality of my life. So we embrace it, we accept it, and we make the best of what we can.

But I guess its time for more coffee and to catch up on this Anime
Love Y'all
~Poppet 

Organ Donation

Its organ donation awareness month, and this is a subject very close to my heart for many reasons. I am the daughter of a transplant nurse. So growing up it was just something you did. Theres no "what?? people do that??" It was "we dont need organs in heaven someone her can keep them." At that age I was to young to comprehend what all this meant. I just new when you died someone else got your organs. As I gotten older, got diagnose with CF, and found out my harsh reality that it became so apparent why those magnetic were on our fridge. Someone was fighting to hold long enough to get that miracle of a second chance at life. Then I came to realize what a taboo subject this way.

People dont openly talk about death, we are so ready to praise the fact that someone is born but when it comes to the latter we are supposed to quiet about it. Leave it be. The its a sad heart wrenching subject its still very real and we need to express our concerns now. Does your family know you want to be one?? Do they know you are one?? Do you know myth vs facts?? Do you know why that little heart is on your drivers license??

When I was 27/28 we thought this it, we need to get listed, but we got a new meds and we bounced me back with a life expectancy of of 32. Based on my numbers thats would be limit my lungs could handle. We might need to talk about this all over again. Then I did what I needed to do, I got a living will, and power to attorney, and got things sorted. Wonder Woman asked if there was anything I wanted, I kinda look at her and was like I want to meet Steven Tyler, I have been in love with this man before I even know who Aerosmith was (a movie I saw them in) though that was an impossible feet for her, I told her I wanted a sleeve and we set to work, I knocked out my sleeve, I got a part lower arm one, and got tattooed with my BFF. As my lungs are steadily going down hill I asked for one last trip, thats all.

You see growing up with a nurse such as a transplant one, she never let me believe there was always tomorrow to get things done. We are in the here and the now. Thats it. We embrace today, we strive for things we want. As my lungs grow weaker and we are needing more PFTs the thought of what I want is so much more simple. I want to live. I want to survive this life and change this world like I always said I was going to do. Do I want to see the world?? Of course. But what I want more then anything is to live.

If more people were organ donors, if organ donors were just a common thing, we might just be able to see more people live. Its not a cure, its not even a fitx, its not a guarantee, but its chance that I can have a life. Its a chance that I can be a full time pup sitter for the best All Father in the entire world and I can travel and see who I want to and be with who I want to.

So often I ask, if it was your loved one struggling to fight off end stage disease, and watch them struggle, what would you do?? Would you be a donor?? Would you fight for them?? Would you spread awareness?? Thats we do, and I promised poison Ivey that she wouldn't live life with out me and thats something I work daily at. Surviving. Not living just surviving.

Please sign up to be a donor, its very simple. You can do it thru the DMV, and im sure donatelife.org has some information to.

Love Yall
~Poppet