Health Update: Health , Wellness, & Finances

The following is sectioned into four parts.

Forewarning...it is long!

Part 1: Health

November 20th officially makes me 9 months post transplant; although to be honest it seems like the surgery was just yesterday!  This post was intended to be published the weekend after my last biopsy that I had on Oct. 28th, but my lack of focus and procrastination prevented that from happening so here we are.  

In other news, the biopsy results were the best to date:  zero rejection, negative for CMV, red blood count went up to a normal level and function and structure looked great.  My white blood count is still on the low side but we will address that after a few more blood tests.  Due to the positive biopsy results, I am able to reduce my steroids and one of my rejection meds (Cellcept), a lower dose of both will hopefully help aid me in feeling healthier.

I was informed, however, from fellow ARVD transplant patients, that most of their tacrolimus levels are between 4-6 approximately.  Whereas my doctors want mine around 12.  The difference doesn't seem like much if you aren't familiar with the drug but it’s incredible how much better one feels on a lower dose.  When my levels were around 20, I was in extreme pain that kept me bedridden pushing me to my pain threshold.  My biopsies are now 2 months apart so hopefully if my next one (Dec 16th) produces positive results then I will ask if lowering my tacrolimus is a possibility.

Ever since my appendectomy I have been feeling a great deal better.**  In combination with my medication reductions, I have felt less fatigue and lethargy and have had less bowel issues and nausea.  This has allowed me to start cooking, catching up on chores and resuming exercise.  After consulting with my transplant team, my family and my husband, I recently made a decision to stop attending cardiac rehab due to the restrictions that were placed on me as well as the limited equipment and availability.  Cardiac Rehab did not allow me to use any weight or stand-up machines even though my doctors gave me the go ahead, therefore I was not able to take advantage of the days I felt strong and energized.  Instead, Sterling and I joined a very nice gym with strict Covid protocols.  The gym has a pool which will eventually allow me to ease my way back into swimming and lots of nooks and crannies so you can space yourself out from other members although it’s been mostly empty.

**Feeling better = One strong day and then 1-2 rest (do nothing) days

Part 2: Wellness

Recovery from a transplant is a hard fought war that will never end.  This takes a toll on one mentally.  Transplant drugs are known to cause erratic emotions, pain tries to convince you to give up, and speed bumps trigger depression, anxiety, hopelessness, and being too self critical. For that reason, a transplant psychologist is assigned to your case.  Mine is currently following up with me monthly.  Although I am the one putting in the leg work daily, he has helped me tremendously. I was prescribed Cymbalta for my depression and Ativan for anxiety and sleep.  We just upped my Cymbalta dose and that has helped give me energy. Apparently depression can cause physical fatigue, not just mental.  My body is very sensitive to these kinds of medications so even though we have increased the dose it is actually the normal starting dose for the majority of people.  

As I have encountered setbacks this year, I often respond to them with self hate.  I tend to judge my lack of actions too harshly, and so my job now is not to be too critical on a day I lack energy and strength and just rest, even if that includes consecutive days. My mom helped put this situation in perspective.  She said I act and respond to my many setbacks (surgery, rejection, infections, etc) by processing the circumstances as normal because I am so accustomed to these now routine occurrences.  She helped me see what I have and what I am going through is in fact anything but normal. I will say even my transplant team was shocked at my recent appendectomy. 

I also had a self realization one night recently where I noticed I focus too much on the future instead of living in the present. This inevitably causes me undo stress and anxiety.  I have always been one to not make plans too far into the future because I know something will manifest to change said plans.  But for some reason I worry about issues that I’m sure will work themselves out when that time comes, as they always seem to do.  So why do I continually put my mental health in a pathway of destruction for a future I cannot foretell?

For instance, I cannot get the thought of having to return to a job I hate sooner rather than later.  As someone who is on disability (which is next to nothing) and married to a teacher, our finances are not sustainable.  I stress myself out almost daily recently thinking about where I will work and when I will need to return to the workforce.  Thinking of the stress of resumes, interviews, business clothes, and many hours away from the comfort of my home.  Yes this is stressful, but why does it have to be.  Why do I need to give my energy to something that is not immediate? That is my goal, to let go of unnecessary stress from things I cannot control.

And since my goal is to not look into an unpredictable future that means when I live in the present, I need to make that a healthy living situation.  When I do live in the present I tend to dwell on the negatives rather than looking and appreciating what I have, how far I’ve come, what I’ve endured, and the amount of progress I’ve made.  I need to practice self-love because I AM beyond grateful for everything in my life and the simple fact of being alive.  There were many times throughout my 33 years so far I should not have survived, but I did, I am here, and I need to love myself!

Part 3: Hobbies & Goals

My Psychologist and I also conversed on how I have so many hobbies and crafts I want to get started but I am overwhelmed between my health, chores, and learning a new project.  We agreed I should just start somewhere, that a tiny little step was better progress than not.  For one, I moved my hobby supplies out of the office (Sterling’s man cave) and into the living room so they will be in sight.  I also started painting a large floral pain by numbers canvas that a friend sent me this summer, it is much harder than I anticipated.  Baby steps!

I also started cooking again this week.  Which by the way, I have to give props to people who are able to create content for blogs and social media on a daily basis.  That takes more work than many realize.  I have really enjoyed sharing my food journey on my new Instagram page (@kielsfoodlife), although I will admit it’s nothing special.  But taking pictures everyday of my food or while I’m cooking can seem so taxing sometimes and consequently I don’t get around to posting as much as I’d like or taking additional photos of the cooking process.  When I do get around to capturing my meals you have to then edit and post the pictures, write a caption and expel even more brain power when you’re already exhausted.  I’m tired just thinking about the process and that’s why I’m giving a shoutout to daily content creators...I see you!  

I have a goal of creating a new blog/website by my one year heartiversary (Feb 20th).  The blog will most likely be through WordPress but I am hoping to have my own domain name.  It will incorporate my health updates and writings, my cooking, photography, and any future hobbies I might try to  explore (macrame, DIY projects, anything to get my creative juices flowing again).  I am a product of an artist/designer so I do have a creative side to me, it has just been suppressed for so long between all my health scares and surgeries, heart failure, and work from the past 10 years or so.  I hope I am able to tap back into that side of me and if I had to pick a way to earn income I would love it to be through things I created myself that others are interested in purchasing.

Sterling and I are also considering investing in a couple of bikes, giving us the opportunity to explore the greenways a bit more here in Raleigh.  However at the moment we don't have the necessary funds or conditioning.  If we purchased the bikes, we would also have to purchase a bike rack for the car, helmets, bike lights, locks, etc.  which add up quickly.  We have started exploring parks around town but my legs do not have the stamina to walk far on uneven grounds quite yet.  Slowly but surely, I just need to do what I can and to stay motivated.

Part 4: Love and Thanks

As always,  thank you for all the love and support, especially if you made it through this incredibly long post.  I also want to express empathy and love to some of my friends out there struggling, I see you and hear you and I can understand your battles to a certain extent.  My mental and physical health are occupying enough of my time that I feel a bit saddened I cannot do more to help.  But please, I have had enough friends die unexpectedly or from suicide and it saddens me to the core, I do not want to see another one go because they felt as though no one cares or no one is listening.  Please seek help if you are one of them, people do care, I care, but I also need to care for myself.  I love you all very much!.

In addition, you should know that Sterling and I could not have made it this far without all of the emotional support but also the financial support.  Your donations mattered!  As I have stated before, many of our friends and family are in a similar situation as us, especially during Covid, being underpaid teachers and essential workers.  However, if you are able to donate anything to help Sterling and myself we would be more than appreciative.  We do not enjoy asking for financial help but during this time we are using all of our available resources and this blog is one those.

We are very fortunate that my parents have the ability to help financially, especially with my medical and prescription bills.  I am not sure how people are able to afford a transplant without Medicare or top notch insurance.  The average cost of a transplant is around a million dollars (no, that is not an exaggeration) and luckily Medicare covered the majority of that cost.  Many of you might remember when I originally became sick in 2010, I had to file for bankruptcy because my medical bills tallied over half a million.

Sterling is now having to deal with his own medical bills from the dermatologist, pulmonologist, and the dentist (needs a crown to replace a failed one and an implant or two) as well as his college loans and car payments.  If you are able to help in any way whatsoever, it will not go in vain.  If you are not, we completely understand, we are just extremely grateful for the friends and family who have gotten us this far.  It has been a grueling journey but we are still chugging along on our way up!

I want everyone to stay safe during the holidays, I know Covid fatigue is setting in with many.  Keep up the positive vibes and hopefully 2021 will be the opposite of 2020, we all know we need it! 

Until next time (hopefully on a new blog) Peace Y’all!

 

Go Fund Me Link

Venmo

Kiele's Food Life

Turtle Apple Pops

Paint by Number Canvas

It's Almost That Time!!!!!

Tough Week: CMV & IUD

***Before you read this, I want you to know I wrote this entire post which took roughly three hours and then it randomly deleted itself.  So now I have rewritten the post although not as good as the original, not that you would know because you never saw the original.  But I did, and it was better, but now my brain is exhausted.  It took about an additional two hours to rewrite this while trying not to let the frustration get to me while also trying to remember what the hell I had just written.  So yea, that's cool.***

The past two weeks I have felt under the weather and I wasn't sure why.  Certain test results I undergo during a biopsy can take up to a week to get back and it turns out one of those late results showed that I have tested positive for CMV (Cytomegalovirus). This is very common among transplant patients and usually treated successfully although in rare cases it does have the potential to be deadly. It's something many people are exposed to usually at a young age but lays dormant most of their lives, unless of course you are immune compromised. Some patients have CMV in their system pre transplant while others contract it from the donor organ.  Luckily, in my case, I was exposed to it pre transplant, which as my coordinator stated is much easier to treat as opposed to receiving it via the donor.  The CMV levels range from 2-9 and mine is at a 3, so it is on the low side, another positive.  

CMV has ravaged my digestive system causing extreme stomach cramping, aches, pains, nausea and lack of appetite in addition to fatigue and headaches.  Today I started a medication called Valcyte.  I was originally on Valcyte after transplant but I was allowed to stop taking it after three months of negative CMV tests.  Valcyte is $450 per month and I will need to be on it for a minimum of four months although that time frame can lengthen if the virus continues to stay active in my system.  I go in for another blood test in two weeks and depending upon the results the doctors will determine if I need to stay on that dose or if I can cut it in half as a maintenance dose for about 3 months.

In addition to the CMV, I have had extraordinary joint pain.  Because I had no rejection during my last biopsy I was allowed to lower my prednisone dose which is a good thing.  However, lowering the dose comes with the adverse side effect of joint pain and therefor the more I lower the dose the more joint pain I will have.  Having Fibromyalgia makes the joint pain even more intense and it is not going to go away anytime soon. The more I lower the dose, the more pain I will have. My knees, shoulders, and especially my hips are in excruciating pain, any and all movement is a struggle.  I can barely move much less sleep. 

AND not only am I dealing with the CMV and joint pain I’ve had to deal with the following… (Men, if you are not comfortable reading about what women have to endure monthly, you may want to stop here and scroll to the bottom to see some flowers!)

This topic is not always comfortable to discuss, let alone share on public forums, but this is what I've been through. This is my story and it's part of the entire picture and I think the stigma of discussing personal matters like this need to be lifted. It's something all women go through and the more stories that are shared, the more that women can see they are not alone or don't have to be ashamed if something isn't 'normal'.

When I was in the hospital in March due to my rejection, the doctors found a small mass on one of my ovaries.  It turned out to be nothing serious but then the GYN doctors began conversing with me about my birth control.  I have been on the same birth control, Junel, for over 6 years.  I originally started Junel due to my irregular periods and excessive bleeding.  I would bleed for two weeks per month, that’s half of a year!

The doctors insisted I stop my birth control pills due to the risk of blood clotting and get an IUD instead. Blood clots are another common problem for transplant patients requiring us to be on some form of blood thinner.  The doctors were ready to place the IUD at that moment but then decided against it since my health and immune system at the time were not in a stable place which put me at a higher risk for an infection.

Well this week was a few months later and I received my IUD.  The thing is, Sterling is willing to have a vasectomy, but due to my irregular periods, a vasectomy would be pointless because I would still need an IUD.  Receiving my IUD was one of the most painful experiences I have ever endured however brief it was.  The first attempt failed.  I was screaming and crying and there was blood all over the floor and table, and I tapped.  I quit.  Thankfully, I have the most amazing husband who helped me control my breathing and kept encouraging me to try again.  He was successful.  We tried again, and although it was still immensely painful, it wasn’t as bad as the first attempt.  If it wasn’t for Sterling, who originally wanted to stay in the lobby I would not have gone through with the IUD which would have left me no other option for my bleeding but just to deal.  I thought I was at my pain threshold but he knew I could do it and he was right. 

That was a very traumatic day for both of us. That man has seen way too much, between that and seeing my heart outside of my body. We called my parents on the way home from Duke to get my mind off the pain and explained what our morning was like.  Next thing you know as I am laying in bed a beautiful bouquet of flowers arrived.  My parents are amazing and always find a way to cheer me up even if it’s just a little.

Between fighting CMV and the joint pain, I have been bedridden for most of this entire week. I begin cardiac rehab in two weeks. With the rehab hopefully providing me a physically active routine and the Valcyte treating the CMV I'm hoping I can begin feeling better rather soon. I tend to get down on myself when I don’t do as much as I have in mind or I’m not as active as I should be.  This past week I thought I was just in a funk.  After finding out I was fighting a virus it was a relief.  It was a relief to know I just wasn't succumbing to my depression. With transplant, it is difficult to decipher between when you are not feeling well due to depression or whether there is something physically wrong. That unsureness makes fighting through fatigue and pain even more challenging. Right now I am resting, hoping for the best and will provide an update after my next blood test.

I commend you, as the reader, if you were able to make it through this entire post. Like I said, my original one was much better but I'm tired and don't care! As always thank you for the continued support and love. Keep staying safe and wearing your masks and enjoy the pictures of these lovely flowers below!

Trying to keep my Go Fund Me page alive, I updated it slightly.

Found the Bright Side

I just want to take this time to thank everyone for the love, support and encouragement you all continue to shower me with.  I do apologize that I have not personally responded to comments regarding my awesome haircuts, it's just quite exhausting for me.  Just know that I see you all and love you all.

I finally recieved my call today regarding my biopsy and I have NO rejection which is awesome!  It was followed by a BS excuse as why I wasn't called on Friday but I will not go into that and will move forward.  I do have to increase my Tacrolimus (main rejection medication), also the one that is causing my hair loss but I also get to lower my steroids a little bit.  I'll probably have even more severe joint paint but we will work through that!

As you all know I have been struggling with this Heart Transplant.  I haven't been able to see a plus side yet.  But then it hit me.  I have been having my groceries delivered due to my risk of getting any kind of infection, although much more expensive and they don't always do a good job of selecting and/or replacing your items.  As Sterling was doing yard work the other day our groceries were delivered.  Instead of asking for his help I decided to do it myself.  I was able to bring in all of the groceries, put them away and still managed to have energy left.  During heart failure, just carrying two bags of groceries would get me out of breath and then I would just have to sit down for quite awhile.  I'm able to bend over to reach things, pick things up, move things, all with out getting absolutely exhausted.  I'm also able to walk up hills and stairs without my heart racing although still difficult due to my muscle weakness.  

So as hard as this journey has been I am at least able to start living a life, which is why they wanted me to get a transplant before I needed to be hospitalized.  You can't always choose your life battles but you can choose how to fight them.  And you can't fight alone.  I am blessed to have such an amazing support team of doctors, family, friends but most of all my husband.

My husband cooks when I'm too tired, does the laundry when I can't, takes care of the trash, is always cleaning the bathrooms or kitchen or floors, takes care of all the yard work in the dreadful heat and humidity, gets anything that I need if I'm unable, consoles me when I need it, gives me space when I need that, takes care of me any way imaginable when I'm sick, watches anything I want, listens to anything I want, and does just about anything I want as long as it makes me happy.  He is my heart and soul and wouldn't have been able to do this without him.  I love you Sterling Cornelius McBride.

Speaking of the summer heat, it has been very difficult to get outside and exercise.  The only possible time that is manageable is early early in the morning.  However, I am still having a very difficult time with getting a good night of sleep so although I wake up early, my body does not want to get out of bed.  The doctors want me to be more active so we are trying to go on a walk every other morning.  Below are some recent photos of our last two walks.  By the end we are drenched and exhausted but at least I'm trying.  I should also be starting Cardiac Rehab soon, which will provide me a safe place to workout in an air conditioned environment.

Thanks for reading and stay safe out there and wear a mask.  Love you all!

June 20, 2020 Update

Today marks the 4 month mark since my transplant.  Not only that,  but it also marks what was supposed to be the weekend of our wedding.  A date that was already planned and set before finding out I was in heart failure and that Sterling and I needed to move back east for the transplant.

I had another biopsy this past Tuesday and everything looks good as far as functionality.  However, I did have low level rejection (Lv 1).  This is common in the first year but after having a couple biopsies with no rejection and being 4 months out, it does scare me.  I have been having a difficult time lately trying to fight through serious mental and physical fatigue.  It's tiring just to convince myself that I have energy to do something, and when I am successful I'm usually hit the following day with intense pain which includes joint pain, muscle aches, migraines, and zero energy to get out of bed; which is all the more defeating.  I seem to have about two good days a week at best on average.  It's frustrating and stressful and the medicines tear your body up, also both physically and mentally, especially the steroids.  There's not much positive I can say at the moment other than my husband is amazing at helping me in every way imaginable, oh yea and I'm alive.

Having an organ removed from you and then replaced by a stranger's is a hard concept to grasp, my body thinks so too.  I know I'm making progress as small as it may seem.  But even so, after a certain point it becomes very challenging to keep fighting just to stay alive.  I've been fighting with my health since I was a child, and I'm just tired and exhausted.  This is in no way me giving up, I'm just being brutally honest with myself and the world.  I don't ever photograph the bad days, so it can look as if I am doing amazing.  Nothing about this is easy but I ain't no quitter and I'll continue to put one foot in front of the other even if that's only every other day. As for now I continue my meds and go back for another biopsy in a month. 

The Covid-19 situation presents another roadblock into keeping a strong mental game.  It would be lovely and relaxing and a needed change of pace to be able to go to a friend or family members house for a nice conversation and dinner or go to a brewery or coffee shop to play a board game, or go down to the beach to celebrate what would have been our wedding day.  But neither of that is in the cards for us anytime soon, especially with the rates rising so drastically here in the south.  I'm not even allowed to venture into a grocery store or even a dr's office (unless it's a critical matter), I wasn't even supposed to go to the farmers market, but I was careful and I needed it for my sanity.

As I mentioned previously, this weekend we would have been in Charleston, SC by the water getting married.  Although, to be honest, I much preferred our court house wedding on Valentine's Day.  Small crowds are more my style, better for my anxiety too.  The following are some photos of our wedding day, me winning in Catan Rivals, me giving Sterling haircut #2, and me getting some steps in.  I know I'm lucky and I know I'm doing pretty well for only 4 months out, and I certainly know I have an amazing support team between my husband, my family and my friends.  I'll keep moving forward as long as possible no matter how bumpy the road. 

4 Month Post Transplant:

• Steroids: They make me emotionally unstable, break out like I'm a greasy teenager, make me grow man hair, and still provide me with a bloated face.

• I've been able to get back into cooking and meal planning and laundry when I have the energy 

• My motor control is still very shaky making certain tasks and hobbies difficult.

• I walked 2 miles the other day which is the longest walk to date since transplant

• My days still mainly consist of binge watching Netflix, playing games, and reading at night.

Thanks for the continued support and the random gifts and cards that keep my spirits high.  Stay safe everyone and please wear a mask for people like me!

Got THE CALL...and then it was Cancelled

So usually when I write a post I spend a couple days revising and editing so it becomes a little easier to read.  Well this time I'm just typing one out quickly because apparently I could get a new heart at any moment.

I just had to make one of the most difficult and life changing decisions I have ever needed to make.  After dinner around 6pm I received a call that Duke had found a heart for me.  I had to be at the hospital in an hour from that call.  I had a panic attack and could not decide what to do for a few reasons.

The obvious being that my life would be changed forever.  I will have all new health issues to deal with, a very long recovery if I make it through surgery, and some crazy ass scars (which I keloid badly so scars don't look great on me).

Another reason is because I get very stressed with life knowing bills will still come in, taxes still need to be filed, etc.  What will happen with my teeth as I am only a year out from surgery and still in retainers.  Simple things like that cause me lots of anxiety, having to relinquish control and put trust into someone else to keep my life organize.  Running a household is tough even with the both of us and thinking Sterling will be in ICU taking care of me and trying to take care of the house and bills just makes me unnerved and worried.  I know he can handle it, that is just a lot to put on someone's shoulders.

The other reason is that all week I had been planning a surprise wedding for Valentine's Day.  We were planning to get married this summer in Charleston and of course had to cancel those plans once we found out I was in heart failure.  Sterling has been wanting to make it official for quite some time now.  Knowing that in order for him to be able to make decisions regarding my health we had to do this soon.  We have never celebrated Valentine's Day so I thought getting married on this day would give us a reason and be an easy date for us to remember.  I reached out on Reddit for a photographer to help us out free of charge and I found one,  I reached out to NextDoor for a wedding dress and someone provided one free of charge, I also found a band to perform a few songs for us free of charge (Niito...they're amazing).  I had a hair appointment, outfits picked out, ring bought, marriage license application filed and then a 4 course meal at a historic house having a Valentine's Dinner Evening Party.  I didn't want all my efforts, and the surprise, and the money spent on clothes and dinner to go to waste. 

I called my parents to help make the decision on whether I should accept the heart or not but they were in just as much shock as I was so it was up to me to decide. Sterling kept reminding me, that my worries were about superficial things that could all be taken care of.  He kept encouraging me that accepting it was the right thing to do, that is in face why we are living in Raleigh to begin with.  I had about 20mins to make the decision and when you're having a panic attack that time flies.  My cardiologist called to give me a pep talk, and then eventually I listened to Sterling's rational mind.  How he remained so calm and sensible in such a stressful anxious moment, I have no idea, but that is one of many reasons why I love him. He's the ying to my yang.

Although the decision to accept the organ was a tough one, one we weren't quite ready for, we made it.  We packed our bag, made our calls, sent some emails and started on our way to Duke.  15 mins into the drive we get a call that the transplant has been cancelled.  Due to privacy issues they are not allowed to give much information but I was told that the heart could not be transported safely in a timely manner which I believe to be due to the warm ischemia time.  I'll explain...

I signed up for two new studies the other day which we knew meant I would get a heart much sooner, I was just not prepared for 3 days later.  The first study deals with how hearts are transported using an OCS machine.  Basically instead of putting the organ on ice, doctors are able to hook it up to this machine and pump blood and oxygen through it while also pacing it.  It also allows a wider range to acquire hearts, up to 2500 miles I believe which more than doubles the typical range.  This study was not that big of a deal so that was an easy decision to make.

The second study involves how hearts are procured.  They are taking hearts from what they call 'DCD' donors.  (Donation after cardiac death) This is where it gets a bit confusing and google will probably explain it better than me.  But basically the heart keeps pumping even though the patient is deceased and then warm ischemia time comes into play (how long the heart can stay in the body before being removed for donation).  30 minutes is the timeline and based on the information provided they were passed that amount of time.  More than 30 minutes they declare the heart to be unsafe to donate. 

The rest of the world participates in OCS transportation and uses DCD donors, it is not something a patient has to decide upon and that is why I chose to sign up for these studies.  The FDA is just behind the times regarding organ donation.  Knowing Duke was only 1 of 3 schools participating in the DCD study and one being Stanford across the country, we knew I would be getting the call soon.  But 3 days later!?  Only 100 patients are part of the DCD study that began in December, and of those 100 only half are eligible for a DCD organ due to them needing a control group.  It is a randomized selection and when I signed up I was randomized to be able to receive a DCD organ.  This means I am in a very small pool of people to accept a DCD within a 2500 mile range. 

It is very likely we will get the call again very soon.  Although this was very dramatic and I think I experienced every emotion under the sun, it was a great trial run.  Next time I get the call I will be ready and will hopefully be in considerably less shock.  I'm shook, stunned, mentally exhausted and just trying to breath through this.  Nothing about a heart transplant is easy, getting a new organ is very difficult on the body for it's entirety and extremely risky but I have to keep in mind I have no other option.  My heart is failing causing the rest of my body to fail due to lack of blood flow and oxygen.  We moved across the country for this and now it is all too real.  I don't think you can ever be ready for such a serious life changing event but we will be as ready as possible.

It's happening people, it's happening.  I'll continue to wait patiently and we still plan on marrying at the court house Friday unless we get THE CALL again.  Onwards and upwards.   Love you all for the continued support.  And if you want to come celebrate our marriage this weekend in Raleigh come on up...it's obviously no longer a surprise!

gofundme.com/kiele

On Call

Let me explain what being on a transplant list is like.  This is not to discuss my feelings in regards to heart failure and needing a new heart, that's for a later post that I can't seem to put together.

This post is to illustrate the unexplainable anxiety waiting for an organ causes not just on myself but for all involved.  While on a transplant list, you are always on call, similar to a doctor.  I could receive THE call, the you have a new heart call, literally any day at any time.  I relate the anxiety to an extreme version of waiting to hear if you have been accepted for your dream job after having an interview, or having a biopsy and waiting for the results.

Anytime I get a call from a (919) area code with Durham listed as the city, my heart sinks and the suspense and panic set in.  That could be THE call.  How do you prepare for that?  How do you prepare for a new organ, a new heart, that could arrive today, tomorrow or in a couple years?  The pressure forces you to question if you're ready for the process, for the surgery, for a new way of life, for a lifetime of medications, illnesses, biopsies, multiple transplants and surgeries and so on.

To try and communicate the amount of stress and angst waiting for a new organ brings about for me is beyond challenging. Yet, it is equally as burdensome on Sterling and my family as well.  All of our lives will be changed, not just mine, for better or for worse.  Getting a transplant is a team effort, requiring multiple caretakers that are financially and physically independent.  Sterling's anxiousness in regards to all of this is compounded by the fact that he does not have cell reception in his school.  He's afraid we'll get the call and we won't be able to get a hold of him.  We're currently just tiptoeing through life.

This process is and will continue to take a toll on us, financially, physically, but more importantly mentally.  We're both doing a great job of staying busy and keeping our minds focused on other things, especially since we just moved into an amazing new rental.  We bought a fire pit and a grill and trying our best to relax our bodies when we can.  However, that is not to say that it doesn't cross our mind daily.  Asking ourselves if we are ready.  Being on a transplant list, waiting for a new organ, as taxing as it is, is only the beginning.  Receiving and maintaining life after a transplant will be an entirely different beast that I have yet to comprehend and process.  That is for a much later post.

One of the reasons I felt compelled to share the emotions of this process is to impart that the excitement people have for me when they hear I am on the list, is not quite as exciting for me.  It's an exceedingly complicated emotional roller coaster and this is a part of it, a part that needed to be shared for others to understand me and this process a bit better. As always, thanks for reading!  Much Love.

Like many of you, I hate asking for money but unfortunately finances are a large part of getting a new heart.  If there is any beer money you might have lying around over the next couple of years, any donation whether now or later will not go in vain.  I love you all and always appreciate your love and support.  gofundme.com/kiele

Heart Transplant Evaluation

My transplant evaluation was originally scheduled for 4 days, to our surprise they were able to cancel day 4 being that the only appointment scheduled was a heart cath which i had completed back in June.   That was the good news, might go as far and say the only good news of the week.

I was able to post about Day 1 on social media but I will briefly run through it again as it pertains to what occurred on Day 3.  We started the day with a lengthy blood draw followed by a 2 hour transplant class.  The class was a general overview of what to expect throughout the entire transplant process including pre and post surgery.  Most of the information we were familiar with although we did learn about how patients are classified once listed.  If the team decides you need to be listed they will then assign you a status 1-6 (1 being the most needy, 6 the least). During the class, when asking questions they answered that our personal transplant coordinator will have better answers since they know the ins and outs of my case.  They made it sound as if this was the most important meeting of the week.

As for Day 2 & 3, I barely made it out of the car at the end of the day.  Day 2 was primarily filled with testing, CT scans, X-Rays, Ultrasounds, Pulmonary Function (Breathing test for lungs) followed by a meeting with my Social Worker and then my Dietician.  My Dietician was the longest part as she broke the news to me that I need to get my BMI down from 35 to 31 by losing close to 50lbs.  How?...well that's the question.  See, I'm retaining fluid in my abdomen AND I can't exercise or do any kind of physical activity, I can barely make it through cleaning a round of dishes.  Also, I informed her before I was diagnosed with Heart Failure I was on a strict 1500 cal/day meal plan for months but was not shedding any pounds.  She informed me my sedentary body needs 1900 cal/day and that it's possible I was undereating.  She also stated that bodies sometimes find a weight they like to maintain and that it can be extremely difficult to stray from that.  The plan is to go back on the 1500 cal/day for a month and if no change we will go up to 1600 cal/day and if that doesn't work we will reassess all together.  I will also be making sure I spend those calories wisely, all whole grain, less simple carbs, etc.  I walked away from that meeting feeling positive about achieving that goal.

Fast forward to Day 3, the most extensive and exhausting of them all.  I started the day with one of the longest echo's (ultrasound of the heart) of my life; I get them yearly.  After the echo and an EKG I went to the appointment I was dreading the most, the CPET, the test that initially diagnosed my heart failure at the end of May, the Cardiopulmonary Stress Test aka CPET.  I had to do this test at 60 RPM's which was much higher than my last test so my legs started to feel fatigue almost immediately.  I lasted 10 minutes and as soon as I stopped pedaling my entire body gave out and basically fell off the bike even though the nurses were there to catch me and were able to lay me down.  I literally had no use of my muscles, even in my hands.  After about another 10 minutes my body finally started to return to normal.  The results?  Well not what we were expecting.  My max VO2 dropped from 11.3 to 10.3 within 3 months time.  We were all expecting my test to improve slightly because I am now at sea level as opposed to 5000ft in elevation.  That was not the case.  Just so you know a normal VO2 level is considered excellent in females if it's greater than 35 and poor if it's below 21.

After all the testing, the plan was to meet the surgeon and then my transplant coordinator.  The surgeon was...well a surgeon.  He rarely made eye contact, just went through the steps, wasn't very informative or personable but that's why he's not my social worker.  I'm sure he is a damn good surgeon just not great with people.  We did discuss having only Right Ventricular failure and how rare it is to receive a transplant without failure of the left ventricle as well.  There is a national governing body for transplants called UNOS and stated that the team will have to speak with them directly and plead my case to put me on the list if in fact they decide to add me on the list.  And if they do decide to list me, more than likely I will fall into the bottom status, Status 6.  This means I will likely need to wait until I am hospitalized before I can receive a transplant, which my cardiologist was trying to prevent. 

So after meeting with the surgeon we were even more eager to meet my coordinator to put all of these pieces throughout the week together and see what she thought of my case but of course that never happened.  She had something come up.  We were never able to meet her and was told she would give us a call which also did not happen. I am still upset about this.  Everyone we spoke with throughout the week mentioned how important our coordinator is and how knowledgeable she is about my case.  This caused frustration and stress and a feeling of just being another number.  I am supposed to hear from her by the end of next week.  The transplant team will meet this coming Thursday the 19th to discuss and decide on my case which then the coordinator will contact me to inform me of their decision and what the next steps will be.  I would have liked to meet with her beforehand in person to discuss her thoughts but it is what it is.

This was a very hard week physically and emotionally.  The takeaways: 1) I need to lose 50lbs (open to suggestions) 2) It is very rare with someone solely with Right Ventricular failure to make it onto the list 3) At best I will be a status 6 meaning I won't be able to get a transplant until I become much sicker.

I'm not sure what will be next or what to expect.  I'm too exhausted to think about anything anyways so we will wait until Thursday.  Thanks for the continued love and support.  Writing this was very difficult because my mind is not able to think and concentrate very well these days which is a side effect.  I will update you all when I hear something.  Help Fund My Transplant Process

Good for Nothing

Help Fund a Heart Transplant

August 1, 2015 is the day that Sterling and I moved from Jackson, WY to Denver, CO to start an extraordinary life together.  Four years later to the day we officially moved to Raleigh while I also had my first cardiac appointment with the Duke team.  What a long stormy and exhausting day we had.  My heart failure specialist, Dr. Stuart Russell, is amazing and I feel very comfortable putting my life in his hands.  He had a long career at Johns Hopkins, where my ARVC team is, which he worked very closely with before moving down to NC two years ago.  So not only is he an incredible HF specialist, he is more familiar with ARVC than most and he knows and communicates with my doctors in Baltimore.

Sadly, the news is not what we were hoping for.  Dr. Russell informed us that to have any chance at a productive and more meaningful life is to be placed on the transplant list.  As he kept reminding Sterling and myself, "I'm good for nothing."  He's not wrong.  This was said in a light manner, but it was stated multiple times and it's true, it's just something we have never allowed ourselves to admit or even speak aloud.

Many people who do not know me or even hear a brief synopsis of what's going on laugh when I say I'm too old for this or that.  Yes, I'm only 32.  However, living a life of a typical 32 year old is nearly impossible with a heart that does not function correctly, with energy levels that are comparable of someone who is 3x my age.  This is why I chose to fly home while Sterling and Adam drove our belongings across country.  I'm able to put on a pretty good front for most, I go out when I can, I socialize when I can, but every time is a struggle and behind the smile is pain and agony.

It hurts me that I'm not able to hang out with Sterling, his sister (Taliyah), and my brother (Adam) while we are all in Raleigh.  I find myself writing this while they are out drinking beer and eating pizza.  I hate to miss out on those kinds of moments, I hate that my energy drags other people down, I hate that my energy drags me down, I hate that I never feel good, and I hate that there is seemingly always something to complain, bitch, and moan about.

Dr. Russell knows that I can't do anything nor does he want me to try to do more than I currently am.  No exercise, no salt, no work.  And even though my latest test results came back normal from the Right Heart Cath, which perplexed my Denver doctor who had given us a great deal of hope that things would be ok, Dr. Russell believes those results would be terrible if the test was taken while I was standing up and moving, however that's not a possibility.  He stated that 10 years ago he would have thought to let me continue on until I was permanently hospitalized.  After years of studies and experience he thinks placing me on the transplant list will hopefully make the transition of getting a new heart easier as we'll be more prepared and hopefully not too sick making for a quicker recovery.

I will finish my complete body examination by the end of August which will require a multitude of tests.  As long as I don't have any signs of cancer and Medicare will pay for my new heart, I will be going on the list.  I will then have multiple and frequent appointments with all sorts of doctors to be informed of the transplant from every angle by talking with the surgeon, therapist, finance counselor, nurses, etc.  I could be on the list for up to two years.  Dr. Russell would rather me go through the process this way rather than suffering from increased arrhythmias, ICD shocks, more extreme fatigue, increased shortness of breath and even water retention.  Of course if I do get any worse in the meantime he can always expedite the urgency.

I am not able to process this news quite yet, I'm in denial, I'm stressed, I'm anxious, and I'm exhausted.  The ongoing discussion of a heart transplant has been "maybe you need one, maybe you don't."  This is the first time it has been said that in fact, yes, you need a transplant and we are starting this process now. 

I've never known a life with a working heart so it is impossible to even comprehend what that life can hold.  The first year of a transplant is very precarious and there is no guarantee it will work, or that you will get a good heart, or that your body will accept it, or that you won't get deathly ill.  The average life span is roughly 15 years so that is something else that is mind boggling.  Overwhelming is an understatement.

Currently words are hard to find, emotions are raw and ever changing, and stress is through the roof.  This is going to be a long expensive journey and I know many of you have donated funds to help Sterling and I out during this life changing experience and we can not thank you enough.  Like many of you, I hate asking for money but unfortunately finances are a large part of getting a new heart.  If there is any beer money you might have lying around over the next couple of years, any donation whether now or later will not go in vain.  I love you all and always appreciate your love and support.  gofundme.com/kiele

P.S.  If anyone knows of someone renting out a house in the Raleigh area, we'd love to hear from you.  We're trying to get out of condos/apts to have more privacy that a house would offer while we go through this trying time.

I Should Not Be Alive Right Now

I'll start by saying I should not even be alive right now.  I was born with two genetic diseases of the heart and kidneys, both of which affect each other negatively.  My heart disease, ARVD/C, is known for taking the lives of young athletes.  I should have been one of them.  Typically, the first person in a family to be diagnosed with ARVD suddenly passes at a young age. 

When I was a child, I began getting short of breath very easily due to an increased heart rate, and by 10 years old, I started to blackout (lose my eyesight) in the middle of sporting events.  By the time anyone could get to me, I was usually laying down by that point so my heart rate subsided.  By mid-college, 2008, I started to pass out.  Each time I passed out, statistically I should not have woken back up.  I continued to pass out much more frequently the next couple years until the end of 2010 when my heart was racing so fast that I couldn't even pass out.  My heart rate was just under 300 bpm.  It took them multiple medications, anesthesia, and shocks to get me back into a normal rhythm.  I say again, I should not be alive right now.

Once I had my ICD placed in me shortly after that episode, nothing was going to kill me.  My ICD has gone off multiple times since, causing a great deal of pain, anxiety depression, fear, etc.  During that time we also discovered my kidney disease, my entire life as a child and as an athlete I not only had a malfunctioning heart, I was living with very little potassium causing my heart to malfunction even more.  I had deadly low levels of potassium all my life, once again I say, I should not be alive right now.

Since 2011, when I was officially diagnosed with both my heart and kidney disease, I started to get my life back on track now that my health was in a more stable condition.  I started working by 2013, moved back out west by 2015, and had a stable career in education by 2016.  My annual tests showed that my heart dysplasia was staying steady, it was already in the moderate levels.  Although I had a few hiccups along the way, developing two other arrhythmias on top of my ventricular tachycardia, we thought my heart was still holding up structurally.  I developed Atrial Tachycardia which was ablated in 2017 and then Sinus Tachycardia which I continue to take medicine for.

Since 2017, my activity levels have drastically reduced.  We thought it was due to the Sinus Tachycardia but now we know that is simply a symptom of Heart Failure.  Due to my anxiety of being shocked and my inability to push myself physically due to the symptoms I was feeling, my doctor suggested I take a stress test, but not your typical one.  She wanted me to take the CPET, it measures how much oxygen you are getting to and from the heart.  During the test I tried pushing myself but around the 9 minute mark I had to start closing my eyes to concentrate on my breath.  They thought I was getting dizzy and because I wasn't allowed to talk, though I couldn't even if I wanted to due to the apparatus, they stopped the test at 10min.

I was very upset.  I have been taking tests since I was a young child for my heart even before I was diagnosed.  Tests I took never showed anything, it was something I consistently heard.  They used to tell me I was just dehydrated.  Well my mindset has kind of been the same since so I thought this was another failed test that wasn't going to show anything.  A couple weeks later when I go see the doctor to discuss the test I realized I failed in a drastically different way, Stage 3 Heart Failure.  Not only that, my blood pressure does not rise which is rare and not ok and that studies have shown candidates with my numbers have a 50% mortality rate within a year.

I have not been able to process this news.  I find out in a few weeks if we can even move forward with a transplant work up.  If my lungs have too much pressure in them, which is very likely than I am not even eligible for a heart transplant.  There is a very good chance that I may not be living in a few years or even in a years time.  Even if I do get the transplant the one year survival rate is 80% and the 10 year survival rate is less than 50%.

Though this is tremendously hard to swallow, I should be grateful that I am even alive.  Statistically I should not be here writing this.  No one wants to die prematurely, no one wants to die before they can even get married and start a family, no one wants to leave their loved ones behind, to think they didn't live life enough, to think that there is so much more to do.  So many thoughts are running through my mind but right now I am staying busy with our big cross country move.  It's the nights that are difficult.  I dread night time every single day. It's when all my insecurities, emotions, wild thoughts and feelings, have the time to rear their ugly head.

We're all dying and we all know that but very rarely do you have time to sit and contemplate your death, very rarely are you faced with the way you will die.  I will fight to the bitter end as I have since I was a child.  I will continue to love life as I have since I was a child.  Life is unbelievably precious and sacred and I am not ready to call it quits.  July 3rd is when I get my next big news so stay tuned!

Love you all.  Thank you to everyone who has donated their time and money.  Thank you to my family for always supporting me.  And thank you to Sterling for being the man I couldn't even dream of!

Gofundme.com/kiele 

Anxiety is Real

In my life up to now, I've had to face adversity time and time again.  With my heart disease has come my most difficult challenges.

Panic attacks and anxiety were always just words to me.  I never fully understood them and I definitely could never empathize with individuals who faced severe anxiety.  Well, I understand the condition now.  After another ICD shock last year, I became a victim to debilitating anxiety.

Back in 2011, when I was shocked, fear took over.  Fear debilitated me.  As we all know, time heals all and eventually I was able to let that fear take a back seat, and after a couple years living life as normally as possible, my ICD reared its ugly head again.  This time, however, it wasn't the fear that took a hold of me but rather it was anxiety.

I began to have weekly panic attacks.  Severely enough that paramedics were called and a couple attacks even required a trip to the ER.  At this point, I wasn't aware that anxiety was causing all of these incidents, and it didn't help that Jackson Hole had no way to interpret my ICD.  For those of you who are reading this that may not be familiar with cardiac arrhythmias, a panic attack feels almost identical to an episode of ventricular tachycardia.  A racing heart, clammy hands, panic mixed with a little fear, and shortness of breath.

I remember the exact moment that my brain put the puzzle pieces together and realized all of these attacks had been caused from anxiety and not an actual  arrhythmia.  We were moving to Denver five months after said shock, we had just gotten back on the road from a lunch break and all of a sudden my heart starts to race.  I immediately panicked, and noticed all of the same symptoms that I have been having.  I had to pull over for an hour and wait for the attack to subside.  Due to the majority of attacks occurring after a meal, I was able to realize my heart was not having arrhythmias, yes my heart rate would increase during those attacks, but it was purely anxiety.

These attacks left me in a vicious cycle during each episode.  The panic attacks would go as follows: my heart begins to race due to the onset anxiety, which then causes more panic to set in, which then leads to an even higher rate leading then to even more anxiety and so on and so forth.

Now that I have recognized anxiety for what it is, the attacks become less and less, the panic subsides a bit, and the mind relaxes.  I am still dealing with anxiety and I try to improve a little at a time, a trip to the gym for light exercise here and there, a game of disc golf, a trip to the mountains, etc.  It seems the further I step, the more I heal.  The fear is still there, the anxious mind remains unsettled, but the debilitation has left.  I have become stronger and even more aware of how my body responds and reacts to different situations, so there are positives that came out of this negative.

The purpose in sharing my experience with anxiety is to open a dialogue amongst fellow ICD patients regarding recognizing and overcoming the fear and anxiety associated with a heart disease and a cardiac defibrillator.

A Road Trip to Starting a New Life

http://www.gofundme.com/ontheroadtolove

My boyfriend, Sterling McBride, who is moving all the way across country to be with me, set up a GoFundMe page to support our road trip out west in order to start our lives together. Unfortunately, we have not been able to see each other since the first week of January due to us living on opposite sides of the country.  We have dealt with many ups and downs, probably more downs than ups in the past few months, but not being able to be together makes those downs that much worse.

We have known each other since 2007 and have been dating on and off, off due to living in separate places, since 2010.  Sterling finishes up Grad School at the end of April and then we are meeting at the ARVD Seminar at Johns Hopkins in Baltimore, MD on May 1st.  I am drowning in bills, but more specifically Medical Bills.  He is drowning in student loans.  After an Associate Degree, Two Bachelor Degrees and a Graduate Degree, he will be paying off loans for a very long time.

His GoFundMe page was in hopes of raising some spending money for our drive out west to our temporary home in Jackson, WY.  After the summer, we will have to move again to Denver, CO which will also break our bank.  We are moving so he can begin his career as a high school history teacher and so I can be closer to better medical facilities.

I know I have not posted in a while, but between moving to Jackson in December 2014, being shocked by my ICD in February and having an array of other serious health issues, I just haven't found the time nor the motivation.

I've already filed for Bankruptcy once in 2011 due to me owing over $500,000 in medical bills, and due to my health issues preventing me from finding a decent career, I have been relying on my parents, which for most 28 year olds' is not ideal.  This trip is for me and my boyfriend to catch up with each other and experience what the world, more particularly America, has to offer.  This is his first road trip and first trip out west and I would like for the both of us to be able to make the most of it.

If anyone can help out in any way, even just a dollar or two, that would be more than amazing. After Baltimore we plan on staying a night outside of Cleveland on one of the Great Lakes, then stopping in Omaha for a night, followed by two nights in Denver and then back to Jackson.  

Also, if anyone lives in Denver and will be able to help us in anyway in regards with housing, school district information, and an office administrative job for myself, that would be just as helpful. Travelling is my passion but unfortunately it is also very expensive.  My boyfriend is amazing and the love of my life. He evens me out, and as most of you know, I need some evening out.

[Side Note] I have unfortunately put in my resignation at work, which has been the best job that I have ever had, working with the best law firm in Jackson, but unfortunately with all my health flare-ups, and all my doctors being over two hours away and the lack of flexibility at work, I had no option but to resign. Not only that, but Sterling and I will be moving to Denver at the end of July.  It's one of the few places that has available teaching positions while also having state of the art medical facilities.

For all you ARVDers out there, I was shocked recently.  My first shock since 2011, and my first shock since having my epicardial ablation.  I have had extreme and debilitating anxiety accompanied with panic attacks due to the shock.  I plan on writing a new post on the health struggles that I have incurred since moving out here to Jackson, WY a few months ago.  The last couple months have been extremely hard on myself but will hopefully only get better when I have Sterling, my wonderful and amazing boyfriend, joining me on this journey through life.

Thanks for reading, and thanks for any and all support.  And I hope to see some of you up at the Seminar this year.

Much Love,

Kiele Binsted

http://www.gofundme.com/ontheroadtolove

Working with ARVD

Back in the Unemployment Line:

The Story of Finding Work with ARVD

So it appears that I have not written anything in over a years' time.  Looking back on it, I may have thought I had nothing noteworthy to speak of.  However, in the last two months, I have received long e-mails from individuals and families suffering from ARVD. Those individuals sparked a bit of inspiration in me to continue to share my story with others.  So one topic I have yet to touch on involves working and finding a career while managing ARVD.  I'm asked frequently about lifestyle effects from the diagnosis. The physical and exercise limitations of course are the most drastic effects for the majority of patients, but I would never have imagined the impact it has had on my employment situation.  Ever since I became ill at the end of 2010, rejoining the workforce has been a very complicated and difficult and most of all, frustrating experience.

From as far back as I can remember I was always the tomboy type, anything that involved playing outside or competition, I wanted in.  So naturally, physical jobs were more of a preference for me.  As I grew into an adult, I knew I did not want an ordinary 9-5 job.  I had and have no desire to sit stationary inside a cubicle for five days a week.  From lifeguarding and working in a kitchen to catering and events, my jobs have always demanded a certain level of intense physicality. One could classify them as "on your feet, go, go, go" type of jobs.

In May of 2013, after almost three years of unemployment and a galore of health issues, I was finally able to return to work.  With much excitement and enthusiasm, I acquired a job as a Part-time (20hrs/wk) hand-tossed pizza and sandwich maker for EarthFare, "the healthy supermarket." My first week there I was already scheduled for 40-hours instead of the promised twenty, a grueling schedule that finally ended when I quit three months later.  I was the only team member trained in every aspect of the prepared foods section which included more manual labor and more hours than I had signed up for. After a few others quit and I was not given sufficient breaks during the day, I had no option but to quit, leaving me to look for work once again.

About a month after quitting I was told about an opening as a Sales Photographer at the highly esteemed Biltmore Estate.  Experience was not required, so the fact that I had experience with photography, tourism, and sales, gave me a leg up.  After an hour long interview and responding with Ferris Buellers Day Off as the answer to my favorite movie,  I was offered the job.  Not only was the job not physically strenuous, something I was not used to at all, it dealt with something I love, photography.  And on top of that I got to work in a European inspired castle in the middle of the Appalachian mountains.

Being a sales photographer was the first job I've held that truly challenges the mind with almost no physical demands. But after 7 months with the Biltmore, I decided to call it quits with them as well. This time it was the mental stress that got to me. On a typical day we could have anywhere from 1000-7000+ guests come through the Biltmore, of which, every individual passes by the camera to be greeted by us.  And for half of the visiting guests, it becomes an unpleasant experience for them, making our experience that less pleasant as well.  On top of that, half the day is spent outside, which with all my medications, I am not able to brave the heat for too long.  It paid well but it was a dead end job, leaving little to no room for advancement.

After quitting the Biltmore, I found a job immediately with the Asheville Tourists, the local minor league baseball team, selling merchandise in their store known as "The Tourist Trap."  This is the same team that the reigning Super Bowl quarterback, Russell Wilson, played for in 2011 as a second baseman.  I only worked during home games, five nights every two weeks, for minimum wage so I knew this was not the answer.

After much soul searching and figuring out what kind of job my body could handle physically and mentally, as well as a job that could offer me benefits, room for advancement, and transfer opportunities out west where my soul will always be, I decided to apply for a front desk position.  I applied to ten different hotels and after four weeks I received a call from the Holiday Inn & Suites in downtown Asheville offering me a position.

I have now been working at this hotel for three weeks.  There are no physical demands and the mental stress is drastically less than the Biltmore.  I feel comfortable in this position and I expect and plan on turning this job into a career.   The road to get to the position I'm currently in was a long and winding one, but on the way I learned more about myself and my limitations.  It has not been an easy transition to adapt a life-long diagnosis into an already existing life but nonetheless it is adaptable.

Three years is a very long time to be out of the workforce, and to re-enter it without being physically capable of completing jobs that I once had, was hard to accept, but accepting is essential.  There is no moving on and progressing as a person if there is no acceptance.  Even though I am no longer able to work in events, where my passion truly lies, or live at a reclusive resort, I can come close. Life is always changing, for the better and for the worse.  It's easy to let the hard times get you down, especially when it's your own body turning on you.  I felt lost once I knew I no longer could be physically active, but now I believe it's opening new doors for me that I may have never opened myself.  Do what you love, because life's too short not to.



Peace, love, and happiness dawgs!!!!