lifeafteratransplant

[lifeafteratransplant]

Trauma, Let's Talk About It.

Many people have trauma, pretty sure 80% or more of us do, to some extent of course. Trauma isn't just something like SA, or abuse from a parent. It comes in many forms. For me it is trauma related to my health.

Since a young age as most of you know I have struggled with my health, if you don't know go back and read my earlier blog posts! I have had many instances where I have not given myself enough time to heal from the previous traumatic experience, and with something else drastic happens, I am knocked down even harder than the last.

Trauma isn't just the things that happen to you, it is also the loss of time, memories, and experiences that you miss out on due to those traumatic experiences. You can let that eat away at you, or you can talk about, keep your head held high and not let it get the best of you.

You never want to NOT deal with it because that will eat you alive. But you are completely valid in your feelings and in your timeline. Everyone recovers/ heals at their own pace.

I am still healing from my past, and I think I always will be. I just choose to make sure that I am open and honest about my experiences because if I am not, then that trauma takes over my life and causes me to miss out on even more living, joy, and happiness.

Don't ever be afraid to open up to someone about these things. There is always someone who is going to relate to you, no matter how niche you think your situation is. If you need help then seek it, please. Your life is too precious to not be lived. You are loved, you are important and unique in your own ways, and don't let your past define you or the person you are meant to become.

Much love,

Karli

[lifeafteratransplant]

Relationships, While Dealing With Health Issues

Dating is hard, marriage is even harder, and making friends as adults sucks. Add health problems into the mix and it gets 10 times worse (in my experience) My marriage is strong, but since our engagement, we’ve dealt with one issue after another when it comes to my health. 

I didn’t have many boyfriends when I was growing up, I had my first love, I met him in the 8thgrade, (oh my god typing this out sounds so corny) but I really thought he was my first love at the time, he didn’t give a rats ass about my diabetes. I only saw him at summer camp, and a handful of times after that. We went to the movies, the fair, his house and met his mom and sister and brother. We were a couple for like 8 months and in the 8th grace that is quite the accomplishment. His name was Joey. Oh, how life was so easy back then! 

Highschool, I had a couple of boyfriends, never really lasted very long there either. I was so afraid of showing my true self people, most of my high school boyfriends didn’t even know I had diabetes. I made sure to take my blood sugars and insulin shots in the bathroom, and kind of ate whatever I wanted to hide the fact that I really should be counting my carbs. (BAD KARLI) It was the teenage urge to fit in. 

Now in my twenties, I went on plenty of dates, had a couple guys break my heart, and couple guys ghost me, and I ghosted a few of them (again, BAD KARLI) and once again I hid the fact that I had health issues. I never thought about oh what if this works out, I am going to have to drop this bomb on them. 

I had one serious boyfriend, and I thought to myself that he was it, so I laid it all on the line, I told him everything about myself. He didn’t care, and was super supportive, but what he didn’t know is that I was NOT taking care of myself. I was skipping blood sugar checks, eating whatever the hell I wanted and not keeping track of anything. This relationship lasted 4 months. He broke up with me, by changing his relationship status over Facebook and moving to Kentucky shortly after that. Not because of my health but because of other things, that had to do with me (which I blame my health anxiety for) 

When it came to giving my all to a relationship, I just couldn’t do it. I was always so scared that the person would leave as soon as I showed them my scars, and my baggage. Until I met my husband. Oh, my sweet husband. 

Frederick is angel when it comes to dealing with my health. When we first started dating, I did the same things I was prone to do, but this man peeled back my layers one at a time. I still was not taking care of myself to the best of my ability, but I was doing better, but slipping up and trying to get back on track. What I didn’t tell him was how bad my diabetes had gotten, I secretly worked on that myself and didn’t ask for help. Hell, I hid it from my parents too. I was in too deep to ask for help, or so I thought. 

When I had my near-death experience (read my first blog post and you’ll understand what I am talking about) It all came to light, my husband even admitted to me that he thought about calling off our engagement. I honestly would not have blamed him, not only was I hurting myself I was hurting everyone around me. I knew I was being selfish; I knew I was killing myself slowly. I didn’t care, I just had the undeniable urge to be “normal.” 

A lot of my issues stemmed from my lack of education of my disease. I knew what to do when I first got diagnosed, and when my body started changing, I was not taught properly on how to adapt to those changes, and how that would affect my diabetes. Everyone knows that hormones change everything. As my body was changing that meant that I had to start making changes to the way I was managing my diabetes. Like changing my insulin dosages, how many carbs per meal I can eat, which types of insulin I needed to take, and so forth. I honestly didn’t get a lot of my questions answered until I moved to North Dakota, and I was 25 years old. 

Another thing that I struggled with was feeling like I was a burden to those around me. I did not want people to feel like they had to “take care” of me. That is why I hid a lot of my issues and tried to deal with them in private. I didn’t want people to worry about if I was ok or not. There is so much that I didn’t tell people and that is one of my biggest regrets in life. I really wish that when I was younger, I took care of myself and trusted in the people around me to help me. I never wanted to feel judged. 

Moral of the story is that, embrace who you are. Love yourself and you will attract the kind of love that you give yourself. When you find “your” people, they will lift you up when you’re weak, they will rally with you when you’re winning, and they will be your biggest supporters when things get hard. It took me a long time to realize that, and lots of failed relationships, and friendships. 

I’m so glad I found “my” people, and learned to accept myself for how God made me.

Much love, 

Karli

[lifeafteratransplant]

Health Anxiety & Trying to Get Into a Routine

Life, is hard. No doubt about it, and having a crazy, stressful schedule is not making it any easier, obviously.

No I don't have kids, but I have a husband, two animals, and myself. Lab/blood draw appointments every Monday, grocery shopping, taking my photography classes, taking my dog to vet for whatever reason, taking him to the groomers, making sure I visit with my mom, and talk to my family back in Iowa, it all comes down on me, and yeah it might not seem as hard as raising a kid, but it is hard for me.

I am double organ transplant recipatant. Which means that I have health anxiety through the roof sometimes. I have to check my blood levels every week just tp make sure I am ok. I hope that it isn't like that forever but I have been through 3 rejections in the 2 years since I had my transplant. Every time was terrifying. This last time was the scariest thought, cause it wasn't just my pancreas it was my kidney too. The thought of loosing my kidney made me sob, and my heart jump out of my chest. My pancreas has been touchy since the get-go. If I loose that I would become diabetic again, which I can handle. Loosing my kidney would me I would have to go back on dialysis and for me that isn't an option. They have used the strongest rejection drugs on me as the possibly can, 3 times now. Meaning that I cannot take them again. Imagine that in the back of your head 24/7, not fun.

This anxiety that I carry makes it hard to make plans, be in public, affects relationships, and causes deep depression and loneliness. I live in a state where this not a lot to do. With my multiple rejections, I haven't been able to hold a job, So basically I am a stay home wife, and that is not something I thought I would ever be. I'm not saying that is bad by any means, but I NEED to have a job to feel like I am contributing to society some how. It becomes very lonely and I fall into a state of depression where it is hard to get out of sometimes.

That is where the second half of the title of this blog post comes in. Trying to have a routine is so important. You have better sleep, which helps your mood, and you energy levels, which helps you get done that shit that needs to get done. I wake up about 8:30-9 every morning, and as of recently try to have breakfast. Whether it be a smoothie, toast and fruit, eggs and bacon. Something in my stomach always helps. Also I take a lot of meds so that is important to have food in your system when taking those. From there, I usually get on the computer check my emails, scroll Facebook, and then look at what I need to do around the house. I am ALWAYS cleaning it seems, I have two pets, both who shed like crazzzzy! Vacuuming every day or every other day is a must, and moping at least once a week. I cooke a lot so constantly loading and unloading the dishwasher, and cleaning the stove and counter tops. The list goes on. After the cleaning is done, I watch my photography courses, do some laundry, make myself lunch, and as of recently I had to put together a whole list of documents for my husband's immigration lawyer so he can get his 10 year green card. Some days I run into town to run errands, like doctor's appointments, grocery shopping, pick up medications, and as of recently furniture shopping. (I'll explain that in another post) I find that just having a list of things to do and crossing them off really helps me.

Everyone's life is different, so that means every routine will look different. Don't model your life after someone else's, you do what works best for you and your schedule. Know your limits, take the time to rest and take care of yourself and life will start to get, maybe not easier, but let's say peaceful. Find solitude and happiness in the little things, and don't take yourself so seriously. Always take care of YOU first, then you can give your best self to the ones you love.

Much love,

Karli

[lifeafteratransplant]

My little family.

[lifeafteratransplant]

Welcome, glad you're here.

Hi,

I am taking a stab at this blogging thing. My name is Karli, I am 28 years old, married, no kids, and riddled with health issues. I sound like a blast don't I?

Let me just start by saying that although I have had lots of health obstacles is my 28 years of living, I still choose to see the positive in things as much as possible, that is why I am starting this blog.

This might sounds clichè, but I do want to help people feel less alone when it comes to struggling with their mental and physical health.

My back story is a long one, but I will try not to bore you. It all starts back when I was 2 years old....we've got a lot of life to cover.

Although I don't remember being 2 years old all that well, it was a time of my life when my kidney issues started, yes, just at 2 years old. I had a disease called Nephrotic syndrome, which Nephrotic syndrome is a kidney disorder that causes your body to pass too much protein in your urine. Nephrotic syndrome is usually caused by damage to the clusters of small blood vessels in your kidneys that filter waste and excess water from your blood. The condition causes swelling, particularly in your feet and ankles, and increases the risk of other health problems.- (source mayoclinc.com) I took a steroid to help with this, and then, my mom was told by a doctor that there was an experimental drug that could help put this to rest, so she signed me up and it worked! For 4 years there were no issues, until at age 6 I was diagnosed with Type 1 Diabetes.

Type 1 Diabetes is a monster. That isn't a play on words, it truly is an unruly monster on your body, and mental health. I mean at 6 years old I didn't really see the effects of my mental health going to crap. Although as soon as I hit my teens years, I sure as hell did. I was not a good kid, yeah I was respectful, I tried hard at school (thought I was flunking at math and some other subjects) but I didn't take care of myself. I started lying to parents about my blood sugars, and eating what ever the hell I wanted and just shooting myself up with insulin to "fix" my high blood sugars. I didn't know the havoc this would reap on my body later on. I would get back on track and then fall off like a vicious cycle. I did have a really good period in high school where I was doing really well, and then I don't really know what happened I fell off the wagon again and went back to being a stupid teenager, this honestly went on into my 20's. There were a lot of things that happened to me in between this time in my life, to the time I finally got my shit together. I struggled with nerve pain my feet so badly, I had to take medication, which caused an allergic reaction. It left me with gaping wounds on my feet, and couldn't walk. I got what is called a cornea ulcer on my eye, had to have my eye sewn shut for 6 months. Multiple hospital stays due to uncontrolled blood sugars. I was really struggling. It all came to a head on December 27th 2019 and that is when my near death experience happened.

At age 23, I met my now husband at a karaoke party at the local bar. I had just moved to North Dakota. I was honestly, ready to move back home, I lost the job that I moved there for due to them shutting their doors. I was unemployed, but had started a new venture in news writing by starting my own newsletter for the small town I lived in, but it wasn't taking off and I didn't have any money for publications. But then I met Frederick, a handsome man from South Africa who was working in the states as a beekeeper. I saw him from across the bar, and whispered to my mom that I thought he was cute. I didn't think anything would come of this because he was going back to SA in a little over 2 months and I didn't think I would ever see him again. Lo and behold we went out for hibachi the next day and the rest is history.

Fast forward 1 year and 2 months later, he flies me out to SA to meet his parents, and see where is from, and let me tell you it was an experience of a lifetime, and that is when he proposed to me. On an overlook looking over an animal reserve, on a private safari he booked for us. Talk about ROMANTIC. (I felt like I was on the bachelorette, cause you know they get engaged in all these BEAUTIFUL places!) It was trip of a lifetime, for so many reasons.

When I got home from that trip I was definitely on a high, but something didn't feel right, I was really fatigued, lethargic and just didn't feel good. I honestly chalked it up to jet lag, and went on my merry way. Well it had come to the point where I knew I needed to go to the doctor, I left work early that day and was sleeping unusual amounts of time, and still waking up wanting to go back to bed. It was awful, that morning I missed my 4 am shift at the coffee shop, Frederick called me, and no answer, mind you he was still in SA. He called my mom, who tried to call me, and I still didn't answer, my phone fell off my bed side, and the battery died. My mom called my neighbor who found me passed out on my bedroom floor barely responsive, they said if it had been 30 minutes later, I could've been dead. This was 2019, so COVID wasn't a thing yet, but I honestly think that is what I had, and plus not taking care my diabetes. It was literally a deadly combination of these two illnesses.

I rang in the new year in the hospital, but I also got my CGM (continuous glucose monitor) called the Dexcom (Nick Jonas is the spokesperson for this, you might know of it) Which completely changed my life for the better, I got ahold of my health and then six months later I got an insulin pump! I was on the fast track to being the healthiest version of myself I have ever been. SIKEEEE. I went to my nuephrologist to get my kidneys checked, because diabetes damages your kidneys as time goes on, plus I was stupid and didn't take care of myself for a long ass time. That is when I was told I would most likely have to have a kidney transplant in some point in time, and that if ever got sick again, I would have to go on dialysis. The rest of 2020 was fine, but only two months in 2021 is when I got sick, again.

After the hell that was 2020, I got my birthday February 2021, was rushed to the hospital via ambulance, and found out that my kidney's were failing at this point, and there was no other option than to get a kidney transplant. While I waited I was put on dialysis and did extensive testing for my kidney transplant. They also told me that I was eligible to get a pancreas transplant, because if I did that, I wouldn't have diabetes anymore and that would keep my new kidney safe from damage.

Dialysis was hell. I was constantly bloated and my body was swollen from all the water I was retaining. I could feel the water sit on my lungs, making it hard to sleep and just breathe sometimes. I couldn't drink more than two glasses of water or liquids a day. Struggled with low blood pressure, which would make me dizzy and nauseous. It was an absolute nightmare. I couldn't work because it was literally right in the middle of the day for 4 hours, and you didn't feel like like doing shit after it because you were either exhausted, starving, or throwing up, sometimes all three at the same time. I did that for 8 months, and then, finally some great news...we thought.

My mom was a match, which was amazing, but she wasn't the "perfect" match. Although it wasn't the news we wanted to hear, my mom so selflessly donated her kidney to what is called the kidney exchange. The kidney exchange is when a donor donates to the "pool" and when she is a match with someone they get her kidney, which boosts me on the list. Not even 8 weeks later, I got the call they found a match for me, both kidney AND pancreas. My whole world just spun and I was in tears on my way to Minneapolis.

Life after a transplant has been, uhhh interesting. I haven't had to test my blood sugar or take insulin, or watch my carbs. I can drink all the fluids I want, and be more free. At the same time though, this comes with a lot of side effects. I take several medications, I have endless doctor appointments, and I am 2 years out. I have had 3 rejections, and have dealt with several infections, viruses and illnesses along the way. I am forever grateful I got this transplant. At the same time, it has left me lonely, depressed, extremely emotional, I've lost friendships. I gained new ones though, I have become closer with family and experienced life with out the weight of diabetes on my shoulders. and that is beautiful.

Life has thrown me one curve ball after another, and I have lived more life than many have in their whole lifetime. I struggle with feeling lost, and stuck a lot because of the set backs I have faced. Always remember that comparison is the theif of joy. You can only live the life you were given, and you do what you can to make it a life worth living. My husband told me this little prayer today, "Give me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference" Live by that and things will fall into place.

Much love,

Karli