It's Official...Surgery Is...

It's Official guys... Surgery is scheduled for...August 27th.  AAAHHH!  Can you say I feel a billion & one different emotions!! Excitement, Nervousness, Anxiety, Scared, Terrified & I can't even name the other emotions running through my head at the moment lol.  

This time has been so long anticipated, it's almost like a joke to be honest.  When I went in for my doctor's appointment last Wednesday, it was the LONGEST day of my life.. 
Mom & I didn't sleep the night before (as usual per our usual Tuesday night routine unfortunately), for some reason, the nights before we drive down to Charleston for my group therapy sessions, nether one of us sleep very well, or at all, it's insane..nerves or something. Needless to say, by the end of this day we were EXHAUSTED!! We "woke up" at 5:30ish, did our morning routines, & were out the door by 6:20 & on the road..by the time we got to Charleston it was nearing 9:45 & my sessions start @ 10:00 & last until 11:30.  This was my LAST session of required Pain Management group therapy, which I was excited & sad about, because I have started to appreciate the therapy & the cause of the group & I truly like the psychologist running the group.  Unfortunately, a good friend that I had met in group, had to miss this week, due to being hospitalized the day prior at MUSC, and I was the only one *in GROUP therapy* so it was very interesting doing a group therapy being the only one there with the psychologist & the medical student...we improvised a lot..but it worked out and I graduated!! ;-)  After that I went to see my friend for a little while, and then headed to my doctors appointment with my surgeon..Scheduled for 12:15(I got out of group early being the only person in there) An hour passed, then two, then almost three before we were called in to an exam room...after that we waited another HOUR before seeing my surgeon..YES, it was AFTER 4PM before seeing my surgeon, and my appointment was for 12:15(you are reading the times correctly!!) Then it was all a roller coaster, consent forms for surgery here, trial consent forms there, information about this here, nutrition before surgery there, THREE immunizations all at the same time.. it was insane!!! It was all happening at once. When people tell you everything happens at once, it truly does!! It's like everything gets put on hold hold hold, & then they take the hold button off & everything flies off the handle BAM! lol  We didn't leave the office until well after 5:30, we had to stop on the road a few times, just to stretch our legs & get some fresh air; it was a LONG day guys!; by the time we got home, it was nearing 12ish.. WHAT a long day that was.. Mom & I were exhausted.. When I told you in the beginning it was a LONG day, I wasn't kidding! haha ;-) Thank god for getting us through that horrific day, getting us home safely, & getting us through those 6weeks safely back & forth..Now we have to get through the surgery & the back & forth after.

I will head down to Charleston Tuesday night, with me pre-surgery nutritional supplements in tow, head to the hospital early Wednesday AM, get fasting labs(for my clinical trial), ultrasound & then I'm free until my room is ready, head back once my room is ready, get my central line placed, have more labs drawn & then have the clinical trial drug(Reberaxin) started around 2am.  Thursday AM, bright & early I'll go into the OR (I'm told around 5-7 AM) & then I bid my pancreas farewell forever...bittersweet but it unfortunately isn't a choice; it's a situation where it's a "not if but when"

I am anxious about my new lifestyle that I will have to live..what will it be like being a diabetic?  Will it be difficult changing my entire lifestyle & diet into a diabetic diet?  Will it be difficult having to measure out my foods..(although I do this a little now; it will be extreme after surgery) Will it be difficult giving myself injections of insulin & pricking my fingers every few hours for blood sugars?  What will this new lifestyle truly be like?? I pray this won't be a difficult adjustment.  

So for now, I ask for prayers for a peaceful next few weeks; to get me through these times of waiting.  You know waiting can be a trying time, and I want this time to be as peaceful on myself and my family as possible.  I also would like prayers, in advance, but of course the days leading up to & the day of surgery for my surgeon, my big total pancreatectomy with auto islet cell transplantation, the islet cell harvest into my liver to get very smoothly & perfect & NO complications with surgery or post-op complications.  This is pre-mature, I know, and I will ask for these prayers again, but beginning my prayers earlier than later means a lot to me. :) Prayer in general is very powerful and I can feel every one of your prayers, I promise you.. I wouldn't have gotten this far in my journey without your prayers and I'll continue to get through this with them.  I thank each & every one of you for the prayers that are sent my way and to my families way!!! <3<3

L.i.M.B.O

Have you ever been stuck in limbo? Thats where we are at right now.. The most frustrating feeling ever!
I have been waiting for a "phone call" to get a potential surgery date for 4 weeks now.. & before that, even weeks prior. It's just an irritating process, when I am in a ton of pain, trying to make an incredibly hard decision on whether to change this dang pancreatic stent out or not prior to my total pancreatectomy or just ride it out..my doctor doesn't know what to do, I don't know what to do.. Like I said LIMBO! If I change it out, I'll be in the hospital for a week bc of my pancreas.. If I don't I could be putting myself at risk bc of the length of time the stent has been in there for... If I change it out I could/probably Will damage more of my very important islet cells for my transplant... What if I change the stents for nothing bc surgery gets scheduled within 4-6wks after stent exchange... If I wait.. I don't know...lots of decisions to be made for one little organ..hmmp.
These are the thoughts going through my mind daily, hourly sometimes!

 I've started my mandatory weekly Pain Management group therapy sessions & they seem to be going well. I won't get into too much detail about them but my favorite part has been my ability to improve on my meditation or what they call in therapy as "mindfullness/relaxation exercises" I've gotten pretty good at them & at the end of my 6 weeks, I'll get a disk of my psychologist going through them like she does in class & I'll be able to put them on my iPod, which sounds dorky but Will be much helpful post-op (if it ever happens) & I'm in a lot of pain.. I'll be able to escape to that relaxation place & try to forget about the pain I am in & focus on other things within my body, my breathing, my thoughts, etc..
This therapy has also taught a lot about acceptance. Accepting how we are in the present & how we can't change what is going on with our chronic illnesses & to try to focus on the now, not the past(which I don't do.. Doesn't do me any good) but to focus on the here & now. It's very refreshing. Ive completed 4 out of my 6..so 2 more to go.. Hopefully that's all that's standing in my way.

On a lighter side of things, this past month my entire family went to Aruba for a nice family vacation & get away. It was OH so needed & I'd like to go back NOW please! U think this was the perfect timing for the entire family to get away.. We are all so stressed about what's going on right now, even those who don't show it(I know it's there) it was great timing for a getaway! Let me just say Aruba is now One of my favorite places to be. The BEST weather around, it never rains, a breeze every day, beautiful clear water.. I couldn't ask for more! I had my amazing family by my side, my wonderful cousins who are more like my best friends & we had a blast. Can't wait & ready for our next trip! <3

I'd like to ask for some prayers of peace & relaxation throughout these next few weeks.. Pray for my doctors & their guidance to give me the best plan & a solid surgery date(finally), pray for peace within my mind(& my family bc I know this is wearing & tearing on them as well!) as well as relaxation.. I need to relax through all of these tough decisions & waiting around. I know God is watching over me & getting me through all the tough stuff but extra prayers are always welcomed!
I always appreciate the love & support & can't thank you enough!
Much love always.

<3 T

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

May Living

So it's been a little while since I've written a nice blog post..I've missed it.  Things have been pretty busy around here lately, which is a good things; to keep my mind off of everything else going on in my life health wise; it's always a nice distraction ;-)  May has been a pleasant month so far with a few hiccups along the way; Mother's Day, the Greek Festival & a couple doctors appointments...

Mother's Day was very nice.  Although I spend everyday with my mom & we are very close, we spent the day together; not really doing anything special in the beginning, except going for our usual walk.  Later in the day, I decided I wanted to treat her to a nice dinner, because she does OH SO MUCH for me, and she truly deserves the world.  I wish I could have given her more than I did, and I know she appreciates everything I give her, but if I could give her the world I sure would.  She truly has been my rock through this entire process I've been going through & I'm not sure where I'd be without here to be honest.  The sacrifices she's made for me, the loss of sleep she's gotten because of me, the arguing with insurance companies to try to make sure everything is taken care in that department for my surgery, & just making sure I am OK in general - She is a true gem!!! Oh how I love her!!! 

Happy Mother's Day!!!

The Greek Festival was this past weekend..it was a blast as always!!  I helped in the beer booth, where I always help, as much as I possibly could, although my energy levels just aren't up to par these days.  This is very disappointing & frustrating.  I could work all day & night, every shift popping my Mythos bottles a couple years ago, & now I have a hard time hanging around after a couple of hours, especially being on my feet for a good few hours, because the pressure in my back becomes so incredibly intense I can hardly move.  I thank God every day for giving me life & just being alive, but I also thank God for bringing me this opportunity to get better & possibly have this cure once & for all.  Be ready, because next years Greek Festival will be just a good as this years, but the old/NEW me will be back in business!! ;-D

I've been finding many different things for "therapy" to take my mind off of my pain when it becomes too much to handle.  Yoga has been my go to & that has helped with relaxation plenty, but walking has helped me a lot as well.. It helps take my mind off of the pain I am in & I can think & concentrate on other things instead of the pain I am currently in... If the pain is just too excruciating, I turn to meditation for relaxation methods.  Another method I have found to be relaxing has been painting.. I'm not too good at it, but it is fun & I love doing abstract type paintings.  They're so easy to attempt & it's hard to mess those up.  I can paint & paint & the next thing I know 4hours have passed by.  
Time is closing in on my time to head back down to Charleston, & I will get my official date of surgery.  It is TBD for July, but I'll know for sure June 12.  It's a little nerve wrecking, but I am ready.  I'm ready for this to be over with so I can be on the road to recovery...such a scary thought but I know it needs to be done.

Walking Goals

Abstract Paintings:  Tape Painting(Left) & Blended Abstract(Right)

Prayers that I ask for are decrease pain throughout these next two months until I have surgery;  I have to make it until my Total Pancreatectomy without having another surgery/stent exchange! 
Prayers for a good harvest when the surgery does happen, so we can have a less chance of developing diabetes post-operation once they mature.
Prayers for myself & my family to have peace within ourselves & for the entire process in general.
After my doctors appointment in June I'll get more specific about surgical prayers & doctor prayers & whatnot. :)
I truly appreciate all of the love, support, & prayers I've been receiving; it means the world to me & I can't thank you all enough!!
Love, Tiff <3

Keeping On, Keeping On

If you know me well enough you know I am a fitness guru.  I love anything about fitness, whether it be going to the gym, home workouts, stepping out of my comfort zone & taking a new workout class, or just plain & simple walking.  Simply being active makes me smile & always make me happy! With my illness, it has interfered quite a bit with my exercise habits that I use to have, just because my energy levels have gone down the drain; although that DOES NOT mean I have stopped being active at all.  I still attempt & try my absolute very best to go, for a  minimum, 30 minute-hour walk a day, as well as some sort of strength training to keep some sort of muscle on my body.  Does this mean I succeed in this goal daily, unfortunately no, but I try my absolutely damnest to get there!  I have been working extra hard on my strength training & yoga, that I have always loved, these past few weeks because I want to be in the best shape that I can be before I go into this surgery to make it just a tad more easier for my recovery process.  The stronger & healthier I can make myself before surgery, the better it will make me post-op for recovery, post-op infection, & just plain 'ol getting back to my old NEW self quicker!! (Sounds Great to me!!) :)

I always love to give reviews on things that I try workout wise, especially home workouts & such, seeing I have become a home workout guru!  I have been a Tone It Up girl for 3, going on 4 years now & I absolutely love their nutrition plan as well as all of their workouts.  They will always be my go-to for workouts & starting point!  Karina & Katrina are amazing women & know their stuff when it comes to a nutrition plan & kicking your booty in a workout.  Although I can't follow the nutrition plan truly these days, I can attest that it does work, the results are REAL & true & if you've ever contemplated getting a nutrition plan from an online trainer or anything like that, these are the girls to go with.  You're a member for life, you get constant updates & tips for these beautiful ladies & their FREE YouTube videos, as well as their BeachBabe DVDs are fabulous! 

Bikini Yoga

Routines from Tone It Up

I also drink Shakeology pretty much daily, from Beachbody.  That has helped me immensely through this entire process!  I'm not too sure if it's truly helped me health wise, just because I am so severely sick, although I can tell you there are SO many benefits to Shakeology that do help you in the health department.  It's been proven to decrease blood pressure, cholesterol, help with diabetes, aid in digestion, among other health conditions; so this truly is a wonderful product.  It has helped me with my digestion, curb my cravings & decrease my intense sugar cravings, which I have a ton, which my horrible hormone imbalance with the pancreatitis sugar cravings are a side effect & shakeo helps a lot with that!! I'm not here trying to sell you this product (although I do sell it, so if you're interested, please contact me at my email)  I'm just giving my review like I've wanted to do for a while now. :)  I, myself, love the vanilla flavor.  There are 4 flavors in regular, vanilla, chocolate, greenberry, & strawberry, & chocolate vegan & tropical strawberry vegan.  There are hundreds of recipes to tailor the shakeology to your likings.  I honestly love it with plain unsweetened almond milk & ice, simple, but it tastes almost like ice cream. I could name probably 20 recipes off the top of my head to do that are SO easy! Like I said before, this is just another supplement that I drink for me, to benefit me & I love it.
I pretty much have every Beachbody workout out there & I'll do individual reviews for all of them later on throughout the month, but I am here to say they are all very challenging & will for sure give you A: drenched in sweat & a great workout B: results C: your moneys worth(if that's your concern)

Regular Shakeology Flavors

I'll continue to be active until my body tells me I can't.  Like I mentioned above, whether I'm simply walking around the block, mall walking, doing a relaxing yoga routine or strength training, I'll be doing SOMETHING, and I'll be pushing myself even more until my surgery comes around so I can be 150% ready for it & recovery even quicker! With my strength, Gods strength, prayers & faith I can get through this with flying colors!! Keep a look out, I'll continue to do reviews on other workout programs that I've done or will be doing to help anyone out on if their looking into them or would like to know more about them. :)  Stay Positive!! <3