I have talked in other blog post about certain signs to me that I may need to go in for a clean out. Being tired more, not being able to keep up with household chores, getting short of breathe faster with things that don't normally make me short of breathe are some. Then there's startng to need O2 more than just at night, Brad telling me I am moaning at night, I apparently do this more frequently when I am close to a clean out. Now there is a new factor for me, Colton has started to get clues he picks up on as well that I might not notice, and tells me "Mom I think it's time for a clean out!" in his matter of fact way. Seems theres never a "good" time to go in, I mean to avoid it at all cost is the goal, but that just doesn't happen in my world. So when I start to think about it and when it would be a good time to go in, sometimes there's a time period where nothing major is going on that I can just get put away and get better for a few weeks. But most the time CF's timing is really crappy!
You get where I'm going with this don't you?!? It's that time all the symptoms are there, and worst of all I've had to wear my O2 almost all day every day since Friday. So I'm calling clinic tomorrow morning, they will probably offer oral anti-biotics, I will decline because 9 times out of 10 they don't work and I don't have time for that! I usually just tell them I need Iv's and they say "okay you know your body better than us" they set it up and I'm off and running for my 3 week clean out. So last time I was in in January it was horrible timing because Janet was in the worst battle fighting cancer. This time around it sucks too! My Great Strides for CF walk is Sunday May 19th! When I get a clean out I do at least 2 weeks in patient, that leaves me in the hospital the day of my walk one week from today, so my plan of action may change up a bit this time. I may go in and get started and then finish up on home Iv's, or I may go in and stay my 2 weeks and take a LOA (leave of absence) for those few hours that day than go back and finish up my stay. Either way I just can't see myself missing my walk, I am the chairperson for this walk, I do almost all the work for it, and am pretty much the only one that knows how everything gets done that day! Would it go on and be as successful without me there? Yes I'm sure it would, but i just can't stand the thought of missing it, it's my baby! Either way it will be fine and life will go on, but as always I have to do what's best for my health.
Saturday, May 11, 2013
|Mom and I on the night of a lifetime! At P!NK's Truth About Love Tour concert. |
One of thee best nights of my life!
Sadly I only get to celebrate my mother in law in memory, I sure do miss her. I swear I heard her come to my house the other day. The way she always did, opened the door and calling out "Hello" I would stop my therapy (because she always stopped by around the same time of day I did my treatments), say "Yeah I'm home" she usually had something to drop off, to tell me, or just nothing really. I could have swore I heard her last week, even stopped my therapy before I realized, that wasn't possible, that she was gone. Or trying to buy a watermelon at the grocery store, there I stand with wet eyes, people probable thought I was crazy. But the thing is she always brought me watermelon, and it was always really juicy, sweet, and delicious! I don't know how to pick out a watermelon, I had to have my Mom do it. It's the small moments like that that hit the hardest. I miss her and I miss those moments. She was no doubt one of thee best Mom's I knew and was just as great of a mother in law. Happy Mothers Day Janet! I bet it's a great celebration where you are.
Having lost Janet and worse yet watching Brad lose his Mom has given me an even deeper appreciation for my Mom. I have always appreciated my Mom, but when we lost Janet I almost felt guilty because I still have the luxury of having my Mom, unlike Brad. Aside from Colton and Brad my Mom is my world. She is ALWAYS there for me regardless of what I may need. She is more than my Mom she is my best friend. I can't imagine what it must have been like to raise me. Being giving a gift of a little girl and then being told she wouldn't live through elementary school, all while raising my older brother. That must have been heart wrenching. I only know what it's like on this side of CF, although I know what it's like to be a mother, I don't know what it's like to be the mother of a CF child. I can only imagine, because seeing Colton sick when he was born and almost losing him, and then when he had to have his appendix removed, and surgery for his broken arm. But once Colton got through those things we got to move on with our life, he got healthy again and gets to be a healthy child. But my Mom and my Dad had to work so hard to keep me healthy everyday, had to watch me get sick, and spend many nights in the hospital. My dad was the only one that worked, they had one vehicle. My mom's journal has writings in it about not being able to get to the hospital to see me for 3 days! Can you imagine leaving your baby in the hospital in the hands of the nurses and doctors for 3 days without seeing her?! My Mom had to, they didn't let you stay at the hospitals with your children back then, she had my brother to take care of, and at one point there was a snow storm, and the one truck they had, the lights had broke. I can only imagine what trying times it must have been for them. But when I was healthy and home they took care of me, but they also let me be a kid and raised me as if I was going to live to be old and grey. No special treatment, no pity parties. I had my big brother to play with and when we weren't fighting we were best buds, we'd take turns playing Cars and Barbies, he'd play Barbies with me for a bit and then we'd play cars and trucks out on the sand hill (I think we played cars and trucks more though)! I can't imagine what it was like for him to have to deal with having a sick sister. Later in life we still play with cars and like to go to the sand hills and play in trucks, only now it's the big kid toys! My Mom was always so good at playing dolls and Barbies with me. I remember when I was in about 1st grade and I came home from school and she had all my Barbies (I had A LOT) sitting up around the dinning room table, with all there hair combed and dressed nice. I loved that. She would do the same with my Cabbage Patch Dolls too (I had A LOT of those too) she'd let me take pictures of them all nice. She taught me to blow a bubble with my gum. I had a great childhood. My parents didn't have a lot and we only got toys or gifts on holidays and birthdays (and not like today for EVERY holiday only Christmas, Birthdays and Easter!). But when those days came they were the best ever! I remember when I got in school my Mom went back to work at nights, so Dad took care of us at night and Mom during the day if we weren't in school. I also remembered I hated it, I wanted my Mom!! I was a Daddy's girl too though maybe I'll write about him on Fathers Day. She could be a mama bear too and came to my defense on more than one occasion. One I remember well, I was in the hospital and only about 10, we shared rooms with others at the time. I was sharing a room with a baby, the mother had left me, her other daughter who was maybe 8 and the baby in the room alone to go to the cafeteria. While she was gone her older daughter was going to take the baby out of the crib, I thought she shouldn't do that so I called the nurse. When the mom got back to the room she pretty much attacked me verbally and told me I had no right to tell her daughter what to do. My parents had left not long before all this happen, and they lived about 1 1/2 hour away from the hospital, no cell phones back then, so I had to wait until they got home and called me to tell my Mom what happen, she was not happy and after speaking with the nurse decided that because it was late they would deal with it in the morning. Well when my Mom got there she laid into that other mom like nobodies business, giving her the 3rd degree for verbally attacking me for trying to keep her baby (who was hooked up to all kinds of stuff) safe. I never felt so loved and protected in my life! We promptly moved to a new room. You don't mess with my Mom and you sure as heck don't mess with her kids. My parents always told us, if something happens and you tell us and it's the truth you'll have our full support, and they did! If we lied though and they found out after having trying to defend us, we were in hot water! I guess I'm rambling now, but I truly had thee best Mom growing up. Even through my teen years we stayed very close and she gave me some great advice that stuck with me and made me the wife and Mom I am. She doesn't give herself nearly enough credit sometimes. In the words of P!NK "She's F*#@%^g Perfect, to me" There's only one thing that's better than having her for my Mom, and that's having her be Colton's Grandma!
Happy Mothers Day Mom! I love you more than you could ever know.