Wishful Thinking...

So a lot has been going in these past few weeks.. A LOT.  I guess you can say that has been a good thing, keeping myself busy.. I've been going to weddings, spending time with family, dealing with some personal issues, painting, & of course going to the doctors (that doesn't ever change I feel like! HA) 

This seems to be the time for weddings.. One of a very close family member got married this past weekend & another close friend is getting married this coming weekend.  A bunch of close friends have gotten engaged recently & I am so ecstatically happy for them as well. This is such a joyous time in their lives & I am so blessed to be able to be apart of that next step & journey of their lives.  

So as everyone has known, this upcoming doctors appointment this past weekend was very anticipated.  It was very up in the air on what was to happen, what was to come of it, what I was to learn of the appointment, what was going to become of the appointment, it was very unknown & very unnerving to be honest... I knew I was going to have to meet with behavioral medicine(essentially the psychologist because of the transplant portion of my surgery this is required for my surgery) & then I knew I was meeting with my PA, but what was to be discussed, I had NO idea.. Whether I was getting my surgery date today, or not I had NO clue.. I was told I would but it was honestly up to them.. what they thought best for me and my plan of action for success.. I came into this appointment with anxiety and extreme nerves because I was waiting for this appointment for 2 months, in a lot of pain, and I am just extremely READY for this next step in my life and ready to start that journey of getting better; not staying in this stream of misery & pain & uncertainty for who knows how long.. this entire process is just very long, exhausting & stressful.  Not that is isn't suppose to be all roses & sunshine because it isn't at all; it's just extremely difficult to get from point A to point B. 

My appointment was not very successful Friday at all.. I was there for about 5 hours, without any success, I felt like.. I am now going to have to do mandatory Pain Management group therapy, which is apparently required for ALL transplant patients, for 6 weeks, prior to surgery.  Now whether I do 2-3 prior to surgery & then finish the rest after surgery is a possibility or I have to do all 6 before surgery is entirely up to the doctors.  They will decide while I am in group sessions & surgery could get scheduled as quickly as within 2 week after therapy has started.  I will be with people similar to me, either other pancreatitis patients or post-op Total Pancreatectomy patients, and I will learn Pain Management coping skills; which will be very helpful post operative, especially if my epidural fails, or my pain is just so incredible that I need extra pain coping skills.  I will start sessions June 24 and hopefully do the 24 & the 1st & see what happens after that. This is a good thing but it just sucks big because it is postponing my surgery an extra 6 weeks maximum when I truly do need it as soon as possible. 

The downfall to having to do this is I will need yet ANOTHER surgery to exchange my stents that are in my pancreas right now keeping my ducts open.  We have held off on that for too long at this point, just because we anticipated surgery to be at the beginning of July.  Surgery could STILL be anytime in July, BUT I can't take that chance of waiting anymore & hurt my ducts or have them perforate with a bad stent in them, because that would be a horrible situation.  I am already in a horrible amount of pain, so the stents need to be changed out.  The bad thing about this is I have been holding out on the surgery because I didn't want my pancreas to be "touched or messed with" if I could hold off before major surgery just because every time we go in & change those stents, it makes my pancreas angry, and when that happens, I lose islet cells, which are those extra important cells I'll need for my transplant!!  I need extra prayers for those special islet cells for my transplant and I just can't have those cells damaged anymore than they have been in the past .... it's just a big deal to me and a scary situation because I don't want to lose anymore of those than what has to be lost so I can get the maximum amount for my surgery & transplant!! The more amount you get for transplant the better changes you have later on for recovery!!!

I know this is a lot of information and more information that you want to know about the pancreas, and I'm sorry... I know everything about the pancreas at this point with my disease!  lol  

in Charleston at the Drs

So at this point, I ask for prayers to get me through a few weeks of group therapy successfully & that I can schedule surgery quickly because I truly am ready.. I am SO ready... I feel like I am hanging on by a thread honestly.  My body is hanging on by a thread .  I know this is needed, it's just a sucky need at this point.. lol Please pray for a smooth transition with this Pain Management & a good learning curve.. I truly want a good result with it... I know it's not what I wanted, but it's what God wanted and I can handle that!  Just keep the prayers coming that surgery happens soon.. that the stent exchange is smooth & doesn't make my pancreas angry or upset & that I get scheduled for surgery pretty quickly & soon.  Once that happens, I'll have much more to update you on.  I'll update with more throughout therapy but until I know for sure when surgery is, it may be a little quiet, just because I don't want to repeat my writings & bother you guys ;) 

Love you guys SO much & I appreciate you're sticking with me through all of this and ALL of your support.  I feel all of your prayers, support, and love.  It means SO much to me and I can't thank you enough..

<3 T

with Baby Mikey at this sweet baptism :)

Word for thought..

 In the past 5 years, I've definitely become more resilient & stronger.  I've overcame things I NEVER knew I could overcome.  I'm so thankful for God, my faith & the strength I've been given to get me through all my struggles & challenges day in & day out with this disease, and I am ready to take on this next chapter in my life in recovery to finally beat this horrible disease.  I am thankful I am being given the opportunity to fight this disease off & trade my disease for another (although the trade off does sound a little grim, I'll trade my CP for T1D anyday if it's going to give me a true life I haven't had in years) I don't know what it's like to live like a normal 20something year old because all I've done is be sick, live in the hospital, be connected to IV's, take medicine, have IVs connected to me 24/7 at home, & so forth & so on.  Taking this trade off & getting a second chance at life is such a blessing & gift from God, I don't know how to give my thanks, except to help others & help them through their experience through blogging, meeting others like myself & sharing my experience, & giving back to the world with my new, healthy body I am getting ready to receive!!  I can't wait to scream from the roof tops how happy and healthy I am, once that day comes, I'll be smiling from ear to ear & praying to God, THANKING GOD, that I am alive, healthy & living my newly given life.  Thank you to EVERYONE who prays for me daily, sends out those amazing text messages & supporting emails, FB posts, phone calls, etc to myself & my family.  They are so greatly appreciated and I feel your strength & it lifts me up daily.  Thank you Thank you!!  The prayers are still greatly appreciated & all of your continued support is welcomed. 

 I will update when there is something to update with (more than likely after my visit to Charleston in 2 weeks).  I am coping right now.  It's definitely a struggle right now, but a struggle I am taking on with stride.  I CAN and I WILL get through this next month (or a few months, whatever I am handed) til my surgery.  I know I can do it because I am stronger than I feel sometimes, but God is right there with me every step of the way, carrying me through the difficult parts I may not feel like I can get through on my own.  These struggles with my pain, fatigue & exhaustion, & then insomnia, anxiety, & everything else I am just handing over to my faith & praying it's taken care of.  Everything will work itself out & all will be A-OK! :)

See you in a few weeks (::fingers crossed:: with some great news) 

<3 T

  

Hello June!!

Hello June! Oh how I am ready for this month!! It's pretty jam packed with lots of fun, doctors appointments, family and friends & me time as well. 

I'll be heading back down to Charleston the second week of June for my 2nd appt with behavioral medicine (gotta make sure I'm not cray cray you know (; ) and meet with my doctor again for any last minute questions & concerns, meet with anesthesia (which is always my favorite part since I work with anesthesia it's the easiest part to me), & sign consent forms (aka signing my life away). I'm very ready for this appointment, as my pain is increasing becoming harder to manage everyday.. It's a struggle but I'm not giving up my fight.. EVER! I'll be getting my official surgery date then as well, even though I have my TBD date.. My official date will make it SO real... I'm very ready for this. Anxious. Nervous. Excited. Scared. Ready. Not ready. Along with just about every other adjective you can think of in the book, that's me right now. I'm very ready though.. It's almost time & I honestly never thought this day would get here but it has. One reason I never thought it wouldn't be here is because I truly believed I'd be better before this day, but God has much larger plans for me & I can't wait to see what those plans are.. What's in store for me; the ride is going to be one hell of a ride but it'll be sweet & amazing. God is great!! 

June is also an amazing month because it's my birthday month.. WAHOO! I'll be spending part of my birthday month with my family on a vacation to ARUBA!! This trip is OH SO NEEDED & I absolutely cannot wait! I love family vacations. Spending time with my family is such a blessing, making those memories with my loved ones & my favorite little cousins who I adore & are more like my siblings than cousins.. The fun we have when we're all together is epic.

June is going to be amazing! Family vacations, family time, friend time already reserved to go paint(my favorite past time), surgery dates & farewell parties for my pancreas! I'll continue to stay as active as I have been, or my body will let me continue to be until my surgery date.  As my moto has been; I am building the strongest, healthiest body possible to get me through the toughest surgery of my life, so I can ROCK this recovery with flying colors!! I want to go into this surgery the healthiest I can to make it as easy as possible on my body to recovery, as well as to make it easier on me to get back into shape once I get the OK from my physicians to start being active again.  I don't plan on sitting on my butt too long licking my wounds & moping around.  I want to take this recovery by it's tail & show it who's boss from the beginning to the end!! All I need to do now is stay in tip top shape until my surgery date, which is now all up to God & prayers!

Please keep those thankful prayers coming & special prayers for my health in this next month to get me through until my surgery is scheduled!! I don't need any unnecessary surgeries prior to having my TP/AIT! 

I'm so thankful to EVERYONE who have been sending me prayers daily & continue to pray for me. I wouldn't be where I am today without your support and love & I just want you to know that if I don't tell you personally, they are greatly appreciated & felt!
~xo T