I Want You to Know

People with chronic illnesses are often misunderstood.

We can't expect normal people who have never been through the same things that we have, to understand our struggles, so we are usually pretty tolerant of the things that are said to us regarding our health conditions and how it affects our lives. 

Here are some things that I personally wish that everyone knew about me, and most ring true for any person battling their own body with a chronic condition. 

It just might make you understand me a little better ;)

-Yes, my condition is real and I have been diagnosed by a doctor.

-I really hate complaining, but sometimes its so hard when you are alone all day and just need to vent.

-If you think I don't look sick, it's because I have invisible illnesses. I'm glad you think I look good, but how I look is not an indication to how I feel.

Don't say, "I hope you feel better soon", because I won't. I might feel better from day to day, but there these are chronic conditions with no cure. Instead, just ask how I'm feeling or if I'm OK. Or if you don't know what to say, then don't say anything.

-My pain and fatigue changes day to day, hour to hour, and minute to minute.

-I'm not tired, I'm fatigued. Even if I sleep all night, I never wake up feeling rested. Sleeping long hours or taking naps do not cure fatigue- it never goes away. You when you have the flu and your entire body aches and you feel to tired and weak to move? That is how my body feels every day. Sometimes I can fight through it, but most days require a nap. I'm not lazy, my body just physically cannot function and I have to lay down.

-I know my body's limits and I know not to push myself past my threshold or I will pay for it for several days later. If I say I can't do something, I really can't do it. You don't have to understand, just believe me when I hit my limit.

-The cold temperatures make many of my conditions worse. The cold air makes my muscles contract and go into spasms which is very painful. If you have ever broken a bone or had a joint operated on, you know that it never feels the same after that, and that weather affects how it feels. My knee, shoulder, and back pain increase with cold or rainy weather.

-My body does not regulate temperature well due to dysautonomia. I have a hard time getting warm when I'm cold, and cooling down when I'm hot.

-I am on many medications for my conditions, so if I'm not dealing with pain, anxiety, depression, insomnia, migraines, fatigue, then I'm dealing with nausea, dizziness, and brain fog from medication side effects.

-I know you mean well, but I hate it when you say "Have you tried this or that for your conditions?" Trust me, I do countless hours of my own research on treatment options and have tried many. Chances are the thing you saw on TV or that Dr. Oz says or that your friend's sister tried is not actually effective- or I've tried and it didn't work for me. 

-Don't give me medical advice if you aren't a doctor.

-Yes, I have modified my diet to help with my issues.

-Sometimes I just want you to listen to me. I don't need suggestions or advice, I just need to talk or vent judgement-free.

-Don't ever tell me that getting old is hell. I hear it from people constantly! You know what's worse than getting old? Being young and unable to enjoy your life.

- I am very matter- of- fact and realistic. about my health issues.

 I'm not negative, I just know what up I'm up against and like to be honest and upfront about it. 

I often downplay the degree of pain. I think I do it mostly so that other people don't feel bad for me or put extra burden on them.
I do it to make other people feel more comfortable. Because no one knows how to react when when you say "No, I'm not doing well today."
I do for myself to to try to convince myself it's not as bad I think it is.
I do it for myself to pretend to be normal.

-If you don't know what any of my conditions are or how they affect me, ask me or Google it. I don't mind if you ask me! I prefer you ask than to have no clue about any of it. These conditions are all a part of me, so to really know me, you need to know what they are.

-Being chronically ill is very lonely.

-It's hard for me to make plans when I literally don't know what I will feel like each day.

-When I'm having a flare, I can act very grumpy and on edge. It is nothing personal, it's just hard to have patience with myself and other people when I'm having a bad day.

-Even if I cancel or have to reschedule plans, please keep inviting me to things! I do my best to be social when I can and it helps to know that others are thinking of me!

-Sometimes I prefer to be alone. Its easier to be alone than to have to be around people who just don't understand you.

- I know I'm not terminally ill, but just like terminal illnesses, my conditions have no cure. They won't go away. This is my life.

-I still have hope that better treatments will be developed that will allow me to live the life I hope to.

2009

Remember when you thought you had life all figured out?
It wasn't going to be so bad, right?

Remember when life laughed at you and said, "nice try"?

I remember in 2009 when I graduated college, when I thought I had it all figured out. I would take my board exams and get a great paying job doing ultrasound, I would save up money for a wedding that I hoped would be coming soon, and I would be able to immediately start paying down my looming student loan debt. I would get married and have kids within 3 years, tops. We would live happily ever after....right???
Easy peasy....right?

Well as I'm sure you've figured out, none of that happened. At least not in the way I thought it would.
During my last year in college I had clinical rotations where I worked full time in the hospital as an intern learning Ultrasound, and still took classes and tests on the side. It was super busy, but it was also amazing. I loved learning about my field and it was one of the best years of my life. Except, remember my pesky left knee problems? Those got worse because I was constantly on my feet in the hospital. I was able to squeeze in some physical therapy appointments after work, but honestly I was so exhausted that it was hard to keep up with it and make progress because by the end of the day I was mentally and physically spent. It seemed like PT was actually making my knee worse, so I put it on hold. The pain got to the point where when I got home from the hospital each day I had to lay in bed with ice on it to get the pain and swelling to go down so I could actually walk again.

I saw 3 different knee specialists in my area to see what could be done to help my knee pain. The first two told me that they couldn't help me because the joint was too deteriorated and I kept getting referred to a different doctor that maybe could help me. I finally ended up with an amazing Orthopedic surgeon that was open, honest, and straight to the point with me, which is exactly what I needed after months of being shuffled around to different specialists. I could try to go through with an meniscus transplant to try to provide more padding inside my knee to cushion it and cut down on pain and discomfort, but since the arthritis is so severe, the chances were very slim that it would be successful.

My other option was a tibial osteotomy where he would cut a wedge in my tibia, fill the wedge with bone from my hip, and realign my leg to try to offset the weight bearing onto the "good" side of the knee. Or the last option was to do nothing and just wait until I was old enough to be a candidate for a replacement.
I decided to go with the osteotomy, for better or for worse. I couldn't keep being in so much pain and do nothing, and this sounded like the best bet. It couldn't be that bad, right???

I graduated at the end of May, had my first board exam the following week, and then had my osteotomy surgery on June 15, 2009.  I was in surgery for some ridiculous amount of time like 8 hours, I woke up in horrendous pain and ended up staying in the hospital for 2 nights while they tried to control my pain. I went home with my parents during my recovery.

 I truly don't remember a big chunk of this time because I was on massive pain meds.  I remember it was not pleasant for anyone. I remember sleeping on a twin bed in the living room, having my leg in a continuous motion exercise machine, and having a commode in the living room so I didn't have to go far for the bathroom. I had to give myself blood thinner injections.

Steve and I bought our first house and closed on it in July 2009. I think I made it to the house at some point in July and moved in. I was unable to put any weight on my knee for 8-10 weeks so I had a wheelchair and crutches. It was not exactly how I imagined moving into my first home with Steve would be. Kinda like how I didn't imagine starting college on crutches either...

I had intense physical therapy where I basically had to learn to walk again. I was so blessed to have such kind, caring, patient physical therapists that worked with me, and one of them had even been through an osteotomy herself, so she was a huge help in getting me through it.
This surgery was a huge undertaking, and I will say that I had absolutely no idea what I was getting into, and that I was in over my head. All of my friends who I graduated with had found jobs right out of school, and I was at home sitting alone, recovering with no end in sight.
Read more about the osteotomy surgery

At the end of August 2009, my mom told me about a dog that was at the local shelter that was beautiful and needed a home. He was past his kill date at the shelter and no one had claimed him or showed any interest in him, except my mom on my behalf, unbeknownst to me. So we ended up going to visit the dog at the shelter, and of course we fell in love. I was still on crutches. I was broken physically and mentally, and this dog just needed someone to take a chance on him.

Begrudgingly, Steve agreed, as long as he could pick the name. So, we brought Banjo home with us that day. Little did I know how much this wild, insane, aggressive, dog would transform into my sweet, loving, loyal best friend.
We both desperately needed each other. I needed something else to focus on, other than myself and my pain. He needed me to show him patience, love, safety, discipline and to give him a home. I can't put into words how much I love Banjo and how much rescuing him has changed and shaped my heart and life.

I ended up being able to walk well enough on my own to be able to work in January 2010, and finally got my first job working part time at a local hospital.

Ok, I got this under control. All would be well now.

Then life said again, "nice try!"