Tuesday, July 14, 2015
Happy Summer everyone.
Has it really been 2 months since I blogged?
Anyway, I hope you all are having a good summer, full of nice weather, fun times, and lots of relaxing. Ours has been so crazy.
We made a list of thirty things to do before summer, and we are more than half way through. Hoping to do a few more this week. Summer is flying by so I am trying to make sure everything gets done, without a rushed "must do" feeling. Tomorrow: a simple picnic.
We have had a lot of people visit this summer. Its such a fun thing. And I am excited to say my mom and DAD are coming over later this month. I am excited to have them here and just be with them.
Laila and I have made it back to Michigan for 2 baby showers and some fun. Crossed off KAYAK from out r summer list while we were there. And we are headed back in the begging of next month. BECAUSE...
We are headed to Atlanta for Family Feud! Hoping the Zell family makes it on, and then keeps making it on! We have been practicing our "Good Answers" a ton, so much so that Laila even says it to just about everyone. The whole experience seems like a dream, its crazy and everyday we seem to get more information on the next step. Once in a lifetime thing right here, and very excited to help Mom cross something off her cancer list.
The last few months have been a little tough for me. My lungs are doing awesome! But my body just hates everything I do. My lungs love my medicine, the rest of my body could leave it. I feel like I am abusing every other organ I have. I am tired all the time, my self image has been low and keeps getting lower...I hate what I see in the mirror (and NO I dont want you all to say Im pretty, so please don't.) I cant get motivated to do too much around the house, so putting shoes on during the day helps me get moving, until I crash on the bed. My body seems to not want to do anything, including my body. I am anemic now, so I had to add iron to my pill box. I had a little scare so they biopsied my uterus...thank God it all came back normal.
I found out I do have Polycystic Ovarian Syndrome. This hit me hard. Just another thing that I can't control. I am not aloud to take hormones with the rest of my medicine, so to get any relief or "cure" would be to have more organs taken out. I can't even think about this.
I keep telling myself this is all mind over matter. Just as I did when I was recovering from transplant. Set my mind to it and I can make it all better. Its scary.
But with it all said, I am still trying to make sure we have a good summer. I don't want school to start without that list complete!! So here is to the rest of summer with a smile on!
Thursday, May 14, 2015
This one was is pure selfishness. It was for me to try to be OK with myself and everything imperfectly perfect about my body. I crossed this one off with a little bit of excitement and a whole lot of nervousness.
My scars. I had pictures of all my scars taken.
First, thank you to Twig and Olive for being as wonderful as ever and once again capturing a moment in our families lives. Courtney made me feel so beautiful. I am telling you, if you live in WI you should check them out, some of the most beautiful photography I am ever seen.
There isn't a part of my body that doesn't have a scar on it. I wear most of them with pride. A sacrifice made in order to keep beating Cystic Fibrosis. Looking at them, they are far from beautiful; yet the story behind them blows me away. I am a survivor, they tell the most detailed story of my war.
I am going to post a few pictures below. But as you can guess, the position of my transplant scar is going to hold me from putting that scar on the blog. I don't want to offend anyone by what they feel they would see. But I will put a few of my other scars.
This is, ummm, very scary for me to do. I have lived my life trying to cover up my battle wounds from the world. The reason? The world isn't ready for it, its human nature to stare and wonder. If I could stop everyone I see and explain it all to them and the reason I have each one, I would feel better, I could do it confidently. So I suppose I am not ready either, I am not ready to not care what people think when they see them. So I beg of you to understand my shyness in doing this, in unveiling yet another ugly result of this killer disease.
Lets start with my transplant scar. Its big, its about 20 inches long. It starts from 6 inches below my armpit, makes a clamshell shape through my ribcage, and ends 6 inches below my other armpit. I had 58 staples to close that bad boy up. It now looks pretty amazing, it healed very well. The interesting part is on my right side of my sternum, you can feel where they cracked me open. I am a little lopsided HAHA!
The chest tube scars. I had five chest tubes after transplant, each about the the size of your finger. I still am amazed that my body handled that many...honestly my body gets little woozy and sore when I talk about all this. I have 3 scars on my left side and 2 scars on my right. Each tube ran through a space in between my ribs and they were stiff, and I could feel it rub against my ribs. Those scars, although necessary, were a pain in my everything...
You all watched as I got my port, and now have it removed. Laila plays with this scar weekly. She likes talking about it, she remembers Mom having the "ball" in her chest and now its just a reminder that she can squeeze mom extra hard without having to worry about it.
My Gtube scar. I had a feeding tube when I was younger. I still remember my first week of high school basketball not sure how to address the thing coming out of my stomach. I could just quickly change with my back towards everyone. I could ignore it and just change in a stall. But it was my first step in just trying to be normal with battle wounds. So, I just got everyones attention and showed them, because I didn't want to have to worry about hiding. In college I had it removed and then as an adult got another one placed, and you were all with me as I got to get that removed too!
The battle wounds that make me the most anxious. I don't wear shorts, rarely wear shorter skirts, and goodness if you can get me into a bathing suit I will most likely have something covering me up! In my early 20s I was placed on an extremely high dose of prednisone and for way too long, and even though my lungs healed, my skin never could. It still is having problems (especially since I am on prednisone for life.)
You will see a few under my arms, and on my elbows, but the worst is my legs. I have stretch marks covering my entire thigh area, and now slowly going past my knees. A Zebra would be jealous of the markings. My skin is weak, and it hurts. I didn't wear jeans for years, and honestly, don't wear them too often now. I've tried to look at them as beautiful, but can never see anything but a disaster. Me telling you all this won't change my mind set although I pray that it would. Yes, I do hope it will help me with the worry of wearing shorts and skirts...I made a promise to myself after I wrote this I would start to do those things!
So this is me. This is my imperfectly perfect scared up warrior body.
|Stretch marks on my legs, many still hidden under the shorts|
|My GTube scar and if you look just toward the right of that you can see some of my chest tube scars|
Crossing off number 24. Get pictures of my transplant scars
Thursday, April 30, 2015
This house has had one crazy week.
We were able to spend a good chunk of time in Destin, FL for a family friends wedding. These are the type of family friends that you call "Aunt" and "Uncle" you the kids care share the same found memories of Shoneys with.
My sister, Angie, and our daughter, Laila, we both asked to be in the wedding. They all looked beautiful with the white sand and blue ways. It was so awesome to watch it all happen. One of those times you watch the father/daughter dance and tears come because you remember when you were 6 and vacationing with them, now we are all grown up.
The Tuesday before we left, Jeremy got a call (if you aren't sure this means, think of it, I guess, as a job offer) to a church in Norfolk, NE! Unreal. Exciting. Nerve raking. Plus many more emotions. The way he told we was actually kind of funny, the poor guy was getting so frustrating cause I was being my ditzy self. We have learned a ton about Norfolk, about Nebraska, and talk a ton about it during our 36 hours in the car. Please keep Jeremy and our family in your prayers while he deliberates. And thank you to everyone who has given us advice so far.
The last few days have caught up to me and I have been running a fever as high as 102. Thank goodness Jeremy could drive the entire way home because I kept falling asleep in the middle of a sentence. Today, I took a warm bath, medicated myself up, called the doctor, got on antibiotics, and the fever is down. Please pray that this will just take 10 days of pills, and I don't end up in the hospital again.
People may think I complain all the time, but I'm not. I'm just letting you know that even though I am blessed with a miracle in miracle with this gift. Transplant life is still very scary. One wrong cold, or pills not swallowed could mean a life...my life, and I fought too hard to be here. I can be fine today and in the hospital with pneumonia the next. I'm telling my story so that people can understand the real life behind it. The cold that Jer has, is a fever of 102 for me. There is no immune system, we transplant patients kill our in order to keep our organ happy where it is at. I'm not even that good of a patient, I try to live too much of a normal life.
Keep and eye out for a post tomorrow. I crossed off an awesome thing on my bucket list and have been thinking how to share it. But I am just going to do it! YAY!!
And I ask again to keep Jeremy in your prayers!
Tuesday, April 7, 2015
I hope that everybody had a great Easter. We had a relaxing one filled with jammies, steak, and peeps in our yard. Yeap, we got peeped. Ha, its actually pretty funny...Laila loved it! Church services where very nice, and it was great to sing in choir. Jeremy had sunrise service so during festival I was up and down the stairs so I could sit with the family.
I had a doctors appointment yesterday and it was probably the best yet. I once again blew all numbers out of the water. Jeremy actually laughed as I dusted my shoulder off on the way back from PFTs. 116%...so as I brag once again, my lungs are probably better than yours. My oxygen was 100% my entire 6 minute walk, which I managed to step over 2,000 steps. My XRay was clear. My weight could probably get better, but nothing was said. The only thing is that my BP is still a little high so they bumped up my meds again, and may need to add another "agent" to help lower it if this doesn't work. The Dr. pretty much said I was one of the best cases...blush.
My team is finally realizing that even though I am a great case, that I never do things easily...like weird blood in my throat, or asking for a dog, or getting sick on holidays. But, this has pretty much been me since I was a child, just ask my mom, dad or sister. I have great timing. So after a few more questions yesterday Dr. Sonetti smiled and said, "Anything else? You want to travel to a third world country? Live in a dirt house underground?" HA, no...I think I am pretty much done asking to break the rules.
It is April of 2015 and its the first time I have been feeling "healthy" this year. Praise the Lord for giving me all the necessary therapies, meds, team, loved ones to help me fight CF and become a transplant patient. But of course, also for my hero I will never know...my donor. For his/her family for giving my a more than awesome gift.
Transplant isn't easy, the road is difficult, both physically and mentally. I've fought all my life and now, today, I get to breathe a little easier. Relax my stressed out mind and body. I am doing well, very well. I get to clean, run errands, do laundry, pack, bath Laila, and get ready to catch a train to Michigan. And I won't run out of breath, I can do it all and still have energy to entertain my child on the train.
Praise the Lord, for wrapping me in his arms. That tiny prayer I said over and over before transplant, is still being answered.
Tuesday, March 17, 2015
After a little visit and a one night stay they finally told me what they thought was wrong...they weren't sure.
I stayed overnight in order to run tests through the night and figure out what was going on. Nothing showed up in all the tests they did. All they knew was that the antibiotics were working, so they sent some orals home with me and said call if it doesn't get better. It did get better. I am just glad that I am healed up and my lungs never took a huge hit. Praise the Lord!
So, yes, I am doing better but not without getting side affects from the meds. I am so dryed out...like I had blisters on my hand because I was so dry. This winter just wasn't my winter. But again Praise the Lord that I survived it and warmer weather is coming. Windows are opened in our house and the germs are flying out.
This Saturday, Jeremy and I are talking to WELS nurses about our experience and how nurses made those times easier. I am looking forward to this one so much, not just because Jeremy will be there doing most of the talking (we all know I like to talk but I do get nervous) but because I love talking about my nurses. Heck, I named my lungs after 2 of them. Nurses work hard, next time you see one you should just thank them for all the work they do.
These next few months are so busy...so busy. And I am so excited for every part of them. Next week my Mom flys in to help with Laila's birthday party. Thats right everyone, my little turns the big 6 in a few weeks. Oh she is as sweet as ever but she is growing way too fast. But more about that later.
I am working on my 100 list but these things are taking time. I love that I can accomplish things. Where do you all think my sister and I should fly this summer to knock a number off my list?! My goal is to cross off about 10 by the end of the summer, so I guess I should be hitting it harder than I am. One of the easiest ones has really become a hard one...I can not cook Country Fried Steak. For real, it turns out nasty!! But I am still working on it, I have tried it about 6 times now and am so gun shy.
Hope everyone has enjoyed the last few days of nice weather. And I have convinced myself it isn't getting cold anymore...ha!
Friday, February 27, 2015
(TBT to pre transplant fighter...trying to get some motivation here!)
It really does amaze me how sick everyone is this year. I have never seen my family as sick as we have been. And I, like I am sure most of you are, am so sick of it.
I have been to the labs and doctors office (a more local one, my primary dr) a few times this week, my throat has been so swollen and sore that I can barely swallow. All they can tell me is that I don't have strep. UGH! Well, what the heck is it?!
I have been coughing out actual blood clots that are forming anywhere from my sinus to my throat. And its not pretty. I took a picture and showed it to my mom (gross I know but she is like one of the only people I can show who doesn't get totally nastied out) because I needed somebody else who if necessary could tell the doc how bad it looked! Its not pretty guys so when you start to get sick, don't wait too long because it can get bad....fast.
But I am blessed with an awesome team in Madison because they threw me on antibiotics asap so whatever this is would be get put in the hospital and I could feel like a normal person again. After taking only 1000mg my throat is already less sore and not as much blood coming from wherever.
But this brings up the point I have always said for years. The reason I will wait an extra 12 hours in pain instead of going the the ER. Why I would rather drive to Madison to see my doc vs drive to a primary. My doc knows me, knows I know my body, has my charts, knows CF, knows transplant.
I want to put it on record that I am sure all these docs are wonderful on "normal
cases on "normal" people. I would trust them to look at Laila, I would trust them if Jeremy, or any other family member went there. But not for me. Do any of you other sick/chronic disease people feel this way?
Two examples in these few short days that make me frustrated (just two but there were more...)
I tell the nurse taking my vital signs, "My blood pressure is going to be a little high, but thats pretty normal for me right now." Just letting her know since I know, really nothing to question. But she did anyways with an, "You think so?" to which, well, I am not proud but when I dont feel well my patience isn't as high so, I straight looked her with an, "I know so." Ooops may have been a little snarky, because she is doing her job as a nurse. But when I come in and tell you, since its been a battle for over a month now, don't question my like I'm dumb. There is a way to ask without questioning my ability to know my own body.
When you have a disease in which you have to often OFTEN follow and know your body and what feels right or whatever....you learn it very well. I can now after years tell you when I even have a fever of 99. Crazy but you learn how to listen to signs.
The other thing is that the prim doc said he didn't want me to just take antibiotics because they are only saved for situations that need it, and since I was showing negative for strep, not to take any. Its probably just viral. Yes, he is 100% correct and would never argue that if was taking a look at, again, Laila, Jeremy or somebody "normal" but guess what, I am not normal (haha very funny guys...I was only talking health here) and need a little extra attention.
I not only have CF, and a lung transplant, but because of the later I have NO immune system. You need to fix this, make sure its not bacteria. Insert call into my transplant coordinator and BOOM I'm only Levaquin and heading back so I can get more labs done. PHEW.
So here I sit at home fighting yet another illness of some sorts. Coughing out blood, and I can tell you the color red remind me of CF and my fears...of death...and I am done with that for awhile. Hurry up spring and heal me fast meds, I am ready and beyond ready to be that healthy girl in a healthy girl body again!
Thursday, February 12, 2015
Its been over a month and today is the first day that I have said the words out loud, "I think my virus is finally gone." Praising the Lord for that number above.
This was from my spiro this morning. Not only is it my transplant normal, but it is even better. This is the highest number I have ever created on my machine. I just about cried. Not only that but tonights blood pressure was lower (at a whopping 148/88) plus my blood sugar was 75 without taking insulin.
My Tac has been lowered to about half of what it was. So the shakes, and anxiety, and sleepless nights are getting so much better. Which in return will help all of the above issues. This Monday I am getting it checked and as much as I want a normal level, it would be sort of, kind of, nice if it was high a bit because it would mean I coud get it lowered again.
The hard work is really starting to pay off. I am still avoiding big crowded areas, this weekend will be my first time is a large crowd but am so prepared for it. Trying to stay in as much as possible so I feel I haven't see anyone in so long, except Connie who comes over...thanks Friend. I have been walking and running on the treadmill (tonights run was done to Micheal Jacksons PYT...good running song. Yesterday was MMMBop) I lift weights. I listen to my alarm 5 times a day, swallowing a handful of pills. I am training myself to breathe deep from the diaphragm. I am eating better (for the most part...peanutbutter and chocolate covered kettlecorn is ok, right?!) and really just trying to get healthy again.
Now that I am getting back to me, I am hoping that my house can finally get cleaned and organized. Anybody know of somebody really good at doing this?! :)
Another plus is that our family got chosen to be on Family Feud! OH MY WORD!! We tape this summer (not sure when yet) and will let you all know when it airs. Is this crazy or what? I am pretty sure my mother is the most excited person I know, followed closely by Jeremy. Now don't get me wrong, I am excited too, but those two are geeked to the max.
March brings another talk, and this one is one I am excited to be asked to do. We get to talk to a bunch of nurses about our experience in the hospital, how and what we liked that our nurses did. Thanks to all the hard working nurses out there, us chronic patients love what you do!