A year of discovery…

This day last year, 7/30/15, was one of the hardest days of my life.

On this day, I awoke after a seemingly sleepless night with a serious hungry belly. I was only hungry because I wasn’t allowed to eat until after surgery. I had an afternoon appointment… which meant I had all morning to think about how things would go.

On this day, I had to get my port put in. Now, the ‘surgery’ to get the port placed is not really serious or anything like that. Yes, they put me to sleep and yes, it hurt MUCH more than I expected but that’s not why it was a rough day….

It was a rough day because it solidified the fact that my health was not improving…

Since 2013, I have literally done whatever I could possibly do to make myself better. I stopped eating out. I removed SO many foods that were causing problems. I stopped exercising. I went on a completely liquid diet for almost a year. I take 30+ supplements/medications per day. I don’t eat food without taking supplements to help digest my food for me. I started tracking everything I ate, every time I had to use the bathroom, and most importantly, I prayed…. every day.

2015 was the worst year in terms of my health. What little weight I had gained back, I quickly lost and was back to being sick daily. In June of 2015, I began weekly rounds of vitamin IV therapy to help improve nutrient deficiencies. Unfortunately, after about 3-4 sessions, my veins quickly gave out… just like the rest of my body.

Each week was nerve-wracking, painful and disappointing. I don’t think I ever left the infusion center with less than 4 holes in my arms. Each week, I left covered in band-aids and bruises. Not only that, but it took longer to get the IVs started than the actual hour long infusion….

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Finally, my doctors decided the port was the best option as I still had several weeks to go with my therapy. Honestly, the initial idea did not scare me at all. In fact, I welcomed it! In all fairness, I was totally biased… it was suggested as I was getting stabbed for the 4th time trying to HOPEFULLY get a vein. After thinking it over, I was heartbroken. I wanted SO bad to just be well again. I wanted to know that everything I was doing was helping… and I wanted my life back.

One of the hardest things I’ve had to do was explain (yet again) to my children the effects of my illnesses. How do you tell a 6 and 2 year old that you will have a foreign object put in your chest and that they won’t be able to run to you, play with you, jump on you, hug you? We explained it to them the best way we knew how… with action figures. In the end, they decided that I was going to be like “Iron Mom”. I liked it. They thought it was cool but they didn’t really understand.. they just knew I was spending a lot of time at the hospital… and that “mom is sick again.”

The day of surgery, my mom and wonderful husband stayed by my side as we waited to be called back. These two are always there when I need it. I know how bad they both desperately want to fix me. My husband sees me at my worst. As a parent, I can’t imagine having a sick child (or adult child) and knowing there’s nothing you can do to fix it or why it happened. I feel for both of them. Once I was finally able to go back, I had to strip down and prepare to get the IV started. Remember, I’m getting this port to make getting my IVs easier… this attempt was the worst. It took longer to start the IV than the actual surgery and recovery. Each nurse or hospital worker.. even the doctor… questioned why I was there. “You look so healthy. Why do you need this?” “What’s wrong with you?” That’s the thing… my problem isn’t something you can ‘see’ from the outside… unless you saw me at 90 lbs (4 months after giving birth to my 2nd child).

Regardless, the surgery went fine and as usual, I awoke to my handsome husband standing by my face. This time, my mom was sitting in the chair next to my bed. Once I got my bearings, I was able to get dressed. Caleb had went to get the car and my mom stayed to help me. I tried to lift my arm and realized the pain was much worse than I anticipated. I instantly cried but luckily, my mom was there to get me presentable so we could leave. At that moment, I knew the upcoming days would be harder than I thought…
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I came home bandaged and sore but I had so many people who were thinking about us and praying for us. Long story short – it was a rough week but we all managed. The next few weeks were rough with new doctors and appointments all over (KC, SE MO, Chicago…) but we managed with that too. We learned so much… not about my health… but about ourselves.

The past year has been a year of discovery in so many different ways.

  • I’ve discovered the port isn’t so bad. In all honesty, it makes things MUCH easier for me. What used to take 2+ hours to get labs drawn, infusions done, etc. now only takes about 20 minutes. I’ve also discovered how to work around it. Ladies, bras are uncomfortable anyway but it’s really annoying when you have a foreign object protruding out right in the way of it. Also, the seatbelt strap goes right across it when I’m driving. Annoying… but you can adjust these things to avoid the pain. I’m still working on how to address the awkward stares and whispered comments of what appears to be a ‘third nipple’ when I’m wearing my swimming suit or something else that lets it show but we’ll figure that out too….
  • I’ve discovered how to be patient….. Some days are much harder than others but we know there’s a plan and a reason.
  • I’ve discovered that I’m much stronger than I thought… not just physically but mentally and emotionally as well. Strength isn’t always determined by muscle… but sometimes perseverance.
  • I’ve discovered that it is okay to break down or have a bad day… sometimes you need to reflect and just deal with it. It’s okay to cry…. the tears stop eventually 🙂
  • I’ve discovered that I can be sick AND still be a mom and a wife… maybe not the one I’d always dreamed of but still. Life isn’t perfect but you can still do the best you can.
  • I’ve discovered that I can be sick AND be useful…maybe not in my original plan but something better! I love owning my own business and operating my bakery. The people I get to meet, my customers and my family help me realize how great this opportunity has been. I so LOVE being able to help those who need it.
  • I’ve discovered that time is precious… and we can’t take it for granted. I’ve spent many days wondering ‘what if?’ What if I get that dreaded diagnosis? What if things are much worse than we thought? What if my kids have to grow up without me (or with me even sicker than I am)? What if my husband has to do this life on his own? It’s safe to say I’m a pessimist BUT I’m learning that these things aren’t as important as living in the moments we have. All of those things could happen… but worrying about it now isn’t going to make anything better. Enjoy those seconds, minutes, days, weeks, months and years… like you never know when it will stop.
  • I’ve discovered that faith is truly above all things… even if I question it frequently. They say “hindsight is always 20/20”. This is true… BUT there are so many lessons to learn from the past. Here’s a few I’ve come up with:
    • Many are surprised to know that I have an 8 year old… do the math, I gave birth to my son at age 20. I was getting ready to be a Junior in college, unmarried, without health insurance or a full-time job. It was scary, unexpected, yet wonderful. Four years later, I gave birth to the princess at age 24 – with health insurance, a steady job, married… a little more ‘stable’. If I had a nickel for all the times I’ve heard ‘You look too young to have kids!”… I’d have a heck of a lot of nickels…. Here’s what they don’t know. I can’t have anymore kids. Correction: it has been highly suggested by numerous doctors that I should NOT have any more. I can get pregnant but the odds of me having a viable pregnancy is slim to none. Basically, I’d have a lot of miscarriages… or if I did sustain a pregnancy, it could be very bad for me and the baby. Needless to say, I can’t do that to myself, my family or an innocent baby. I often wondered why things worked out how they did. Now, I know. If we would have waited to have children, it may not have been a possibility… or it would have been a very heartbreaking one. I was blessed with two beautiful, healthy children that I love very much and will be forever grateful for them.
    • You’ll often find me wondering WHY this happened? What did I do wrong? Why do I deserve this? Why do my kids have to have a sick mom? I’ve come to the conclusion that I’m happy it was me. If anyone has to be sick, I’m happy it was me. I don’t want my husband sick. I don’t want my kids to have health issues. I don’t want anyone else to deal with it. I will gladly take the burdens so they don’t have to. As for the kids, I don’t want them to have to deal with it. However, they take it like champs. Seriously, they are the sweetest sometimes. They know how special food is and how important it is to pay attention to it. At Lane’s birthday party this year, his friends actually asked if the cake had gluten in it. They didn’t want it to make me sick. Lane had told them at school that gluten made me sick…. he notices and he (kind of) understands. They are observant of people and their needs…. even at this early in their lives. I think it has been a valuable lesson for all of us.
    • Ever heard of that 7 year itch in marriage? People often say it’s the hardest time in a marriage. We didn’t have that… We’ve been married 8 years in October (and together for 12). The last couple years, instead of being ‘bored’, ‘annoyed’ and ‘tired’ of each other… our love has grown immensely. Why? Because my situation has put life into a much better perspective for us. The situation itself sucks.. I hate having ‘dates’ at the hospital but we value the time together. I couldn’t begin to explain the love and appreciation I have for my husband. He literally keeps me going every day.

Life is something that will constantly surprise, intrigue and exhaust me. However, each of us have a journey that God has planned out for us. This one is mine. So on this ‘anniversary’ of receiving my port, I will not be sad; I will not feel sorry for myself; I will not let it run my life. This is just another path I must follow with faith and hope. People are always telling me that I ‘inspire’ them or that they are so ‘proud’ of me. I don’t see it but I’m very thankful for the comments. Honestly, I’ve been in a bad place – when I thought I had no way out but God, my family and you all kept me going. If anything YOU are the inspiration. There’s two ways to look at life – bad and good. If you look at the things in your life as bad, they will be. However, find that good… it’s there, trust me.

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