(Three weeks! BAM!)
-three weeks-
It's all those daily, random, tasks that I don't have to do anymore; that make me stop and say, "Thank You, Jesus." :)
Three weeks post transplant; one week discharged from hospital. Today I went to my second clinic appointment since leaving the hospital - a long freaking day! Were were at the clinic from seven o'clock in the morning to around two o'clock in the afternoon; I was stabbed in the chest THREE times while they were trying to access my port to draw my blood; I met an older guy who was wonderful, telling me "I promise, it'll get a lot easier!"
I also broke down and cried in front of the endocrinologist and the student with her... at the mention of Rafe. It was at the end of the day; so I was really worn out... and it was rather embarrassing; but I couldn't control it. I just broke... so unexpectedly. We were talking about diabetes and how Rafe had CFRD (CF related diabetes) and I don't. The doctor was surprised and said, "You don't have CFRD? That's very unusual... most CFers have it by your age. You're very lucky." Then I mentioned my brother had it and she said, "Oh he has it?" I said, "No. He had it. He passed away in January..." and I broke. I started bawling and couldn't stop. It only lasted a few minutes and the ladies were extra sweet telling me, "It's okay. Totally understandable..." They cried some too, then gave me tissues. Sigh. I guess it does come in huge, unexpected, crashing waves of emotion and tears... I miss him so much. <3
(Old picture - Rafe & me: makes me smile)
...Simply, this past week has been hectic. I've met multiple times with the lung transplant doctors, the ear nose & throat doctor, the endocrinologist, diabetes consultants, my caseworker, nurses, the nutritionist, the throat therapists, and so on. So far my blood work looks good; my x-rays looks great; the scars are healing properly; the pain is still pretty bad, but more tolerable. At night it's something like this: Pain medications before bed means weird ass dreams & no pain medications before bed means lots of pain in the morning! Sigh. Other than that, I haven't needed them as much during the day... so that's good :) It'll pass; it just takes time.
(Me and Joe & my lung transplant doctor...)
Oh, by the way - I finally passed my swallow test last Thursday, April 4th!!! So am able to eat again! So happy!! My therapists and I cried. ;) After three weeks, I will nEvEr take food for granted again!!!! Praise God for that! :)
(My throat therapists on I the day I passed the test!)
So I still have a hoarse voice. Though the throat doctor doesn't seem too concerned. It comes and it goes - better at some points of the day than others. The doctor is giving me a few more weeks to see if there's any improvement at all. If no improvement we might have to do a nerve test in my throat - which includes sticking a needle into the front of my throat and keeping it there for several minutes!!! AH! He said we'd be able to tell for sUrE if the vocal chord is paralyzed and permanently damaged, or not. He is nice and so if we can avoid that - if my throat improves on it's own (or with the small injection shots) - he wants to try ... and that's a good thing ;) Crossing my fingers it all works out... but even if my vocal chord is paralyzed, he said they can move it to a place where the throat does close completely and I can possibly have my full voice back. Crossing fingers again. ;)
Oh, and since my voice was damaged - whether temporary or not - my laugh is gone! If you know me, you know I have a loud laugh! Now, it's just air! I miss it!! I hope it comes back...
Oh, and since my voice was damaged - whether temporary or not - my laugh is gone! If you know me, you know I have a loud laugh! Now, it's just air! I miss it!! I hope it comes back...
(I just like this picture... :)
My physical therapy officially starts Thursday, April 10th...it'll be for one hour and three times a week. However, I've already started my own exercises; which includes LOTS of walking! Seriously my legs have got a ways to go before it can catch up with my new lungs. For example - the other day during my first clinic visit I walked to and from the car to the building, from there to the lab, to the different doctor offices... back outside, from one end up a parking lot to the other ... uphill. Then after we got back to the apartments, I walked up our three flights of stairs - just to prove my husband I could. ;) And I did! I have never breathed so deep in my entire life. At one point Joe was like, "Are you short of breath?" I said, "No... I my lungs are fine! It's my legs that are killing me!" Each day the pain in my legs seem to get worse - especially my right leg. I'm thinking I'm putting more pressure on my right leg... anyway, I'm trying to take it a little easy this evening. Don't want to overdo it. But I hope I'm ready for Thursday - I'm both excited and nervous! I know it's going to hurt... they warned me, "Take your pain meds before rehab!"
(my new shoes for rehab)
Mercy Sunday, April 7th, I went to Mass for the first time in months. I was so excited; it was beautiful. The music was gorgeous, the church was wonderful, the priest was kind. I felt so happy and alive during mass. The sermon touched our hearts in a very unique way. It felt like God was speaking directly to us. It was all about suffering and God's mercy. Whether emotionally or physically, we all receive scars in the suffering of our lives; and how our Lord offered His pain for us. He talked about having faith in God; trusting him; offering up our pain and sorrows - believe in the mercy of Christ; regardless the difficulties we face. It was beautiful; touched me deeply. "No one leaves this world without scars..." I sure got mine. ;)
(me and Joe after church)
On a side note: My sister, Teesa, and her family came to visit this past weekend - and we had a wonderful time. I love them so. Also, my mum went back home with them after staying with me since my surgery. I miss her so much! I am so glad she was with us this whole time! I know we all hated saying goodbye (for now) but she was ready to get back to dad and my baby sister - and Joe and I are ready to continue our adventure with just us together. ;)
Mum, thank you... thank you for everything. You are a blessing to all of our lives. I love you more than you know; more than words can express. I am grateful to you in so many ways... I promise to always be there for you too. And like I said before, I promise to keep working hard. I want to make you all proud... you, daddy, Rafe, Joe, and the rest of the family. Muah! :)
(I love you.)
Living life without supplemental oxygen; with the freedom to go wherever we want, whenever we want - without lugging huge tanks around... it's been so long, and I'm loving it. :)
Much love,
~Julie Jean <3
p.s. Today's inspiration:
"Life's the canvas and we're the painter; we're not doing anybody any favors by waiting for the art to create itself. I know you're scared and so am I - Yeah we might fall but we might fly. All I know is we'll never know unless we try... So we'll try until we run out of things to try."
Thank you, babylove. <3
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