Christmas

I should be sleeping I am sure, but I figured I take the time in the quiet with Rubes by my feet to update the blog. Its been a long crazy week and a whirl wind of things going on.

I have been busy all week if it hasn't been one thing its another, I had appointments and I had shopping, and I needed food, and then I just need a rest day, and more appointments. You get it and then I got a call from the All Father what I was doing this morning the exact same time I had an appointment and I ended up at Mass tonight and I loved it. It's always lovely to be surrounded by people have joy and love in their heart. The All Father and Ms. J (who will from here on out be called Frita) got me a salt thing to help clear my lungs, and some essential oils to help with my lungs to. We were getting to the point we needed something to work or I need an emergency  appointment but we got things worked out and I got to  catch up with some friends.

I am loving the salt!! The oils are amazing to and I have a connection to get them and it just helps break down/open up my mucus/lungs. It also smells so incredibly good now I need to try the digestive stuff to. I also signed up for Cystic Life, to help surround myself by people who understand what I go thru and its not just for CFers.

Christmas isn't always the best for me, their is a lot of stuff that goes wrong for me and this month is just an example of how much I do not like Christmas but it has turned out to be a fun Christmas and I am so bless to be surrounded by amazing people.

I must hop of here,
Love Y'all
~Poppet 

Weekend

This will probably be my last post until the new year. I share a computer with someone and I broke my wireless iPad keyboard and my Macbook needs upgrades cause its really really old. I mean it's like 10 years old and runs wonderfully. Wonder Woman has taking it to work this semester and had to explain by the decorations it is indeed my Macbook and not hers. And thankfully my nursing family knows me very well because I have spent countless hours there with her so they just new lol. I am her creative nut. My creativity leans more toward dark and metal then most people. If not FOOD. But anyways I guess I'll give you a quick update of where we stand going into Christmas and the new year.

Though I have made it clear no one will talk to me about these lungs of mine until after the New Year because my medical team has decided to let me have the holidays. I know I mentioned in the last blog that I told Wonder Woman and the All Father we have to make this the best Christmas ever. So we are striving for that.

Since we couldn't go Christmas shopping two weeks ago, me and Wonder Woman went this past weekend which probably wasn't the smartest idea ever but we survived. We went out towards one of the malls and hit a LOT of traffic. So we decided uh no lets go hit up the Field and Stream store and go into the other shopping center the back way. Wonder Woman has been pushing me to pick something out for Christmas other then a tattoo or two... Well lets be real tattoos. So I was like whatever we need to go shopping anyways and I need things at Ulta and I was getting to crisis mode on the benadryl levels we keep around the house. One bottle if not enough for this time of year.

So while I was in the boot section she was shopping for clothes and trying to keep an eye on me at the same time. I finally helped her pick out a few shirts and a really cute sweater!! If you don't know I love plaid. I have quite a few shirts in their that I wear when it comes to plaid but my close keep getting to big. Their was this table of plaid shirts sitting by her sweater area and this lite teal caught my eye and I told her it was almost Alice blue and she assured me it was indeed Kane style. Even the smallest size was to big so she's like you can wear it as a jacket like you do anyways. Whatever I gave in and I almost got it early. (I had this gigantic bag of her clothes and mine we bot in my chair and i brought them to her to ask which I am giving her now and for Christmas because she had a Christmas party she had to go to and she offered but I gave back cause she insisted i needed something for under the tree.)

So we finally go to the other place I think it was Bed Bath and Beyond which was a HUGE mistake. As soon as you walk in the for its culinary heaven and Wonder Woman was trying to get me OUT of that section. They had all 3 of my favorite brands to but the quality of knives were horrible!! And she got me past all the Harley Quinn stuff to finally find what we were looking for. Which I would NOT touch and someone thought I was crazy. I am sure SO many people have touched that pillow I was NOT touching it.

Once we got out there we finally stocked me up on benadryl and we never made it to Ulta which we need to finally get to sometime this week. I think Wonder Woman wants to get me a makeup palette or brushes. Because I have stocked her up this year. She knows what she's getting, so I have I think 2 shirts back their, a book, a little cube with pics on it, no 4 shirts and sweater maybe something else in there.

But i guess I need to get off of here.
Love Y'all
~Poppet 

Small Update

This has been an awful week, as we hit Wednesday I got a phone call from my nurse to call her back. I call her and she told Superman wanted me to make an appointment because my lung function was inconclusive due to the fact that I can not get enough air in and out of my lungs. When she first said that I had no idea it was to make an appointment with Superman I figured OK lets try again. No, its discuss options. After the end of January I have NO idea where I am going to be or what we are even going to do. The only other time I had him call me for an appointment is before I went to Texas because I had just gotten out of the hospital. That was a HUGE trip but I have already texted the Sif and told her its time for a trip to Asgard even. No she doesn't live in Asgard.

I have actually not told anyone this outside of Wonder Woman and the All Father and I think Sif. A lot of you will find out here, and I am sorry but there is only so much I can handle in a week and I have finally found my breaking point. Thankfully God has made me a pretty tough girl and I just bend in the wind and bounce back swinging. I told both of them though when I texted them we have got to make this the best Christmas ever. I am not sure how long I am going to be in my area and I am so sure the All Father and Ms. J (I really need to rename her Frida) will come to see me so it's not an issue. Its just a LOT to take in around the holidays. I do not have a good track record with the holidays anyways but I don't want to ruin everyone else's either. I want my Warriors to be happy. I want them to enjoy the holidays and I want to celebrate such a wonderful life and wonderful people who have consistently helped me find peace and love with the insanity I go thru.

I am trying to find away to cope with this, I am also still trying to exercise my lungs even though they are infected AGAIN, I know I am going to be OK I am tough girl and I know how to handle my own. But please pray for my Warriors they have to cope with this to and I assure its much easier to be the patient saying "Hey I am OK," then it is for someone to believe it.

Love Y'all

~Poppet

Tis the Season...

Everyone in the house being sick has finally caught up with me. As much as I have tried to avoid this I am once again sick. I was doing treatment last night and half way thru pulmozyne I felt like I had someone sitting on my chest and it took me a few minutes to get things feeling a bit OK. Wonder Woman was as always guiding me thru what I needed to be done. She then told me "I do not need to tell you what do, you know what to do, and when you don't i'll tell you to do it." It twisted my mind all around. I should have seen this coming because when I was out Friday I had to stop to take meds because I was so dizzy from all the issue going on in my lungs. And once my lungs affect my heart my POTS is triggered off.

My family is also starting to bake and they use "real" ingredients even though mine taste normal and all you have to do is say please and i'll be in the kitchen baking. Any form of activity helps out. So it'll be Tis the Season to avoid my allergens. I am so crazy about washing my hands its obsessive. Wonder Woman usually just rolls her eyes at me and lets me carry on with it. It gets to the point I can be overly paranoid, which people assure me, that it's a self embedded safety issue so I don't trigger something. I also still need to get things for Christmas for my family and though I know what they want its just a matter of getting and wrapping it. Wonder Woman also was trying to figure out what to get me outside of finishing my tattoo, and I told her that was enough and she insisted I needed something under the tree. I insisted I did not and Bah Humbug!! Yeah that so went over well as she mentioned the words "Ulta" and "What have you seen there that you need supervision for not to buy." It's like uhhh... Johnny Depp. Not. Finished. lol I also need to find a place for the March Hare!! He throws salt at Alice in the kitchen when she mentions it needs more salt and its such a Chef thing to do!!

Other than this, not much has really been going on health wise. Its just a matter of finding the right balance with my lungs, which is getting to prove hard. I have the best team I could ever ask for on my side. Clearly Wonder Woman has me trained to know what to do, even when I do not want to. Why she called to stop the tattoo because my lungs were quite bothersome. Or well, I kept getting dizzy cause a plug kept getting lodged in an airway.

I am also working endlessly to stay healthy enough to not need to lungs, I have so much to live for. When I tell people every day counts its because you do not know how precious a day is until you face a disease like mine. Or any terminal illness. I am OK with my fate, I have accepted it a long time but, I also have a LOT of fight left in me and I know I need to make the best of every moment count. I have no idea where I will be in the next few months, but no one really ever does. So its up to us as people to make the best of our lives.

Wonder Woman just called me and I have 10 mins left before I have to go take some meds to help open up my lungs a bit.

Love Y'all
~Poppet

Perspective

There is a quote that floats around "Your allowed to break down, you are allowed to cry, but you are never allowed to give up." I was just talking to my Grandma and she was listing everything that has happened thru out the year, and she eneded with a friend of hers going thru major stuff (back to the whole not my life keep it private thing) and my lungs are not doing so hot. It's all about perspective, I am known for living in Wonderland and finding the good in any bad situation. Yes my aunt broke her knee, destroyed her car in a major storm, and we had a few issues with Grandma's vehicle, and our water heater broke. This does sound like a terrible year I will not deny that but lets find the good in the bad.

My aunt had an awesome to that pushed her to get movement back in her knee, even when she didn't want to move it, she also had the entire summer off and she tried TRIED to relate to me with oxygen, even though 24 hours doesn't equal 3 years of dried cracked bleeding noses, she gave it an effort and she also got a decently new car out of the disaster she had with her (the 2 are unrelated) and we were blessed enough to get Grandma's care fixed. The water heater will get fixed and my lungs well its inevitable i have CF, but I have a fabulous care team and we have OPTIONS. How fabulous is it that we are able to reach out to people. Not everyone has the blessing.

I admit myself there are times, I break down and go why me?? I learned not to say this to doctors because some go "omg emotions lets medicate her!!" Its HUMAN to have emotions. Even me the one who can be emotionally detached at times. I know how to shut myself down and preserve my poor little body from a terrible reaction. It's human to feel sadness, to cry, to be upset with your situation. I have been there myself. When things happen with my lungs that are OUT of my control I stop and have a mini pity party. Who doesn't?? But after your mini breakdown take the time to go OK, is this fixable?? If it is lets fix it. Most of us are not in this alone. The people you love are here to help you thru life.

I told my friend recently. I do need new lungs in the near future. She sent me a video to remind me to never give up!! A week or less before I opened up to Wonder Woman, that when I tell people that they have pity for me and I do not want that at all. She gently reassured me the people who love you will not pity you and feel sorry for you they will back you up and be there for you. She is SO right, thats exactly what the people I love do. They back me up and let me be sick when my body needs and is always the encouragement in the background.

The reason behind this is not "theres always someone worse then you." No no no thats not are attitude at all. We all have are personal battles and what is terrible for some, is not so terrible for someone else. Its all about perspective. It's about finding the good in every situation. It's something everyone can learn, yes my lungs are questionable, but we have options. My aunt's knee broke but she was able to get it fixed. There positive in everything you just got to take the time to find it.

But I must get off here for bit,
Love Y'all
~Poppet