Monday, August 24, 2015

Who's the Expert Here?

I had a realization this past week when I had an appointment with yet another new doctor. If you've been following my blog for any amount of time, you may have picked up on my *slight* dislike of new doctors...yeah...NOT A FAN.

Ask anyone in my family, and they'll tell you that I definitely prepare myself for new patient appointments by going on the defensive and being prepared to fight for myself. I've had doctors tell me there was nothing wrong with me, everything was just in my head, or even to come back when I couldn't walk and maybe then he would have an interest in my case. It's definitely been a journey to get to where I am now with the doctors that I have. I am so thankful to have the doctors that I do, but I still get nervous when I have to see a new one.

Last Thursday I had a first appointment with a local allergist/immunologist. This summer has been rough and right now my health is very unpredictable and my mast cells are just *slightly* out of control. My PCP gave me the name of a local allergist for me to see who he felt like would have more experience with some of the more unusual treatment options recommended by my specialist and is more familiar with allergy-type reactions in general. Despite knowing that my PCP knew this doctor personally and was recommending him did not ease my nervousness that I had at the first appointment.

But I learned what I think is an extremely valuable lesson at this appointment.

I know that I'm an unusual case, but I've never really thought about what that looks like from a doctor's perspective. I walk into a new office with a 4-inch thick binder of my medical records, a feeding tube and my backpack with formula, and my defenses up. The doctor has never met me before, and all he sees is a patient who has multiple doctors around the country, a long list of "weird' issues, specific treatment requirements, and has a defensive wall built up. All of a sudden, I don't sound like the kind of patient that a doctor wants to see...

And that's why my appointment with my new allergist did not start off so well last week. We both had our guard up, and it was obvious neither of us were completely comfortable during at the beginning of the appointment. I felt like he didn't believe me and was barely listening as he was asking questions and taking notes. It seemed like he was just going through the motions and trying to check items off his list so he could get on to his next patient.

I started to get really frustrated and discouraged, but instead of just shutting down, I instead tried to turn the appointment around. While I didn't use these exact words in the appointment, this is basically what I said to my doctor. And this is where the tension in the room eased and we realized that we both had something to add to the appointment.

"I know that you are the medical expert, and I respect that. I wouldn't be in your office if I didn't think you had that training and the experience to help me. But I'm the expert on me. I'm not going to pretend I understand everything about this because I don't, that's why I'm here. All I'm asking is that you would just listen to what I know about me."

Again, didn't use those exact words, but you get the gist of it. And I think that is the first time I've said something like that to a doctor. I can't say that was *the* moment the tension lifted, but it certainly helped. That appointment ended a complete 180 from how it started. And I am so thankful for that!

I desperately need a local allergist on board in case I'm admitted anywhere and just to help me manage my currently-out-of-control symptoms. The appointment ended with my new allergist saying he was going to contact my specialist in MN and talk with some of his colleagues at the Cleveland Clinic about treatment options, and he would get back in touch with me after he did that. I would call that a successful appointment!

And it happened because we realized that we both bring a different perspective and were willing to meet in the middle. He's the medical expert, and I'm the expert on me.

As a rare disease patient, I understand that doctors may not have heard about MCAS or know anything about it. To be honest, that scares me at times. I carry my medical information with me at all times. I wear a medical bracelet, my backpack is labeled with a medical symbol, my medical information and Epipens are in well-labeled bags, and I still wonder if that is enough. I have severe food allergies and multiple drug allergies. My body does not react normally to some "routine" ER treatments for some of my symptoms. While I do my best to be prepared, all it takes is one doctor not willing to follow my protocol for me to be in danger. There have been times when I've been in the hospital and it has been like playing Russian Roulette because it only takes one doctor not listening to seriously endanger my health.

I'm not trying to pretend that I know more than the doctors. I know they do have a lot of knowledge and have gone through school and spent years working to be where they are. All I'm asking is for them to recognize that for as long as they've been in school studying, I've been living with my condition and been learning about myself. Treating any condition, but especially rare diseases and chronic illnesses needs to be a collaboration.

So I'll end with this:

For rare disease/chronic illness patients:

Give doctors the benefit of the doubt. I know it's easier said than done, but try to give them a chance. They are the medical experts. Respect them for that. Acknowledge that you know they have a lot to offer. Let's be honest, we wouldn't be going to doctors if we didn't absolutely HAVE to, so just remind them that we need them. And be open. They may present something you had previously brushed aside or something completely new. At least be willing to discuss it with them. We want them to listen when we ask for something, so let's give them the same respect.

For doctors/nurses/etc. treating us:

THANK YOU! We need you. We know you are the medical experts, but we just need you to understand that we are experts too, just of ourselves. You see us in the ER or every few months in your office, we live with ourselves 24/7. When we tell you something does or doesn't work, please believe us, even if it sounds crazy. We don't want to be scared to go to the hospital because we are worried that we will not be treated properly and are afraid for our health. All we are asking is for you to be willing to listen to us and remember that we are the experts on us.

Tuesday, August 18, 2015

Letting Go

I was looking back over previous posts and reading the ones I wrote about making the tough decision to get a feeding tube back in February. At the time, I couldn't believe things had progressed to that point and I was scared of what that meant. Now, 6 months later, I can say it was absolutely the right decision.

I'm finding myself back in that place again, and while I know that just like last time, things will work out, it doesn't make the decision any less difficult...

After a lot of prayer, discussions with close family and friends, and many tears, we have made the decision for me to give up my assistantship at Kent State.

It has been an incredibly difficult decision to make. I feel like I am failing on certain levels, not being able to see something through to the end. I really enjoy the teaching I get to do as a GA and being a part of the multiple research projects that are always going on at Kent.

Unfortunately, the reality is that right now, I am just not physically able to continue. Last year was tough and I found myself having to get other GAs to cover for me entirely too often because I was sick, or seeing doctors out of state, or having surgery, or admitted to the hospital again...there was always something...and I can't repeat that again. It's not fair to my professors and the other GAs having to always be prepared to reschedule their work to cover for me. I wish I could say things have changed since the end of last year, but that's not really the case.

Every day is a struggle for me. I do have good days where I am able to run a couple errands and get some work done without *too* much difficulty. But more often than not, I have rough days. When those come, I can do nothing and still may end up in the ER. Things are so unpredictable, and we (my husband and I) feel that putting that pressure on me to HAVE to be teaching and doing research projects on a regular schedule may just be too much for me to handle right now. So while it is a very tough decision to accept,we feel that for this season of life, this is the path we are on.

Just to clarify, I am NOT dropping out of the program entirely. I will still be continuing on with my PhD research. I am just giving up my position as a graduate assistant. This means I will not be teaching this year and will not have required hours to be helping out with the extra research projects going on around the labs. I will still be working on my proposal, hoping to defend that *soon* and doing my own data collection. I am so close to finishing my degree, I just can't stop now without at least trying.

When I moved to Ohio 3 years ago, I never thought I finishing this program was even a question. I'm used to excelling in school and being a really good student. It is humbling to be struggling to keep up with projects that really should not be as difficult as they have been. I am extremely disappointed that I have to let go of my teaching and research, but in an effort to be able to actually finish my degree, we believe this may be the best option.

If you've been following my blog for a while, you know that my OneWord for 2015 is HOPE. And I'm still holding on to that. Right now my circumstances are not at all what I had anticipated...and it's easy to look at my life right now and feel useless and a failure. But I can look back to when we made the decision for the feeding tube and be reminded and even through tough decisions, God is with me 100% of the way. So all I can do is be reminded that God is still in control.

I don't know what God has in store for us. I do know that right now life is hard. I know that I struggle to see how I can be making a difference for God when I can go an entire week without interacting with anyone other than Nick. How can I live in a way that reflects God when there is no one around to see it?

I don't know.

I wish I had an answer, but I don't.

But I do know that God is still in control. And I trust Him. Right now, it's hard to let go. There may be more tears and frustration and discouragement. But it won't change that my focus is on God. If He has a different plan for me earning a PhD, that's okay with me...I just wish it wasn't so painful to see something else I enjoy being taken away.

Saturday, August 1, 2015

What does it mean to ME?

August is Gastroparesis Awareness Month.

I've been thinking about what kind of post I wanted to write for that. I felt like I wanted to post SOMETHING since this is a condition that has made a huge impact on my life, but couldn't figure out exactly what I wanted to focus on.

The typical awareness post seems to be the informative, here's-lots-of-facts-about-this-disease post, but since I've already done that, (click here to read) I wanted to do something else.

So I decided to just share what gastroparesis (GP) means to me and my family. I think the best awareness is to understand what it looks like to be affected by something. I know I can read all the facts and info about something, but it isn't until I meet someone who has been personally changed by it that everything clicks.

So here is what GP (and a bit of chronic illness in general) looks like to me and my family:

It means no dinner dates.

Baby food in the cabinets with no plans for a baby any time soon (sorry Moms =P)

A random and sporadic eating schedule...I may eat 3 times in one day then not again for 4 days.

Our living room being overtaken with feeding tube supplies and formula

Summer long battles with insurance companies trying to get coverage for said formula

An overflowing medicine cabinet with nausea and pain medications in multiple forms so I have options when I'm really sick

A slurpee fund jar where we put all our spare change (surprisingly something I've been able to tolerate quite well =P)

Trips back and forth to Pittsburgh to see my doctor and manage my feeding tube

Balancing wanting to go out to dinner with friends and dealing with it being hard to sit in restaurants and be unable to eat

Missing my favorite foods: tortilla chips, fruits and veggies, thai food, indian food

Being accused of being anorexic because I've lost weight because I can't keep anything down

Many nights of ER trips for pain and nausea relief when my meds stopped working

Nick learning to read me and know when to push for more aggressive treatment and when to just give me a hug and turn on the next episode of House or Suits

Me learning to trust Nick's judgement of when I've gone too far and need to go to the ER

Worrying every time I throw up that I've dislodged my feeding tube

The frustration of being in severe pain because my intestines have stopped moving, and the only medications strong enough to take away the pain also have the side effect of slowing down my digestion further

Having to schedule the days I'm going to try to eat something so if my stomach freaks out I have time to recover before my next important meeting/class/appointment/etc.

Canceling plans at the last minute because my stomach has decided I'm done for the day

Living with GP can be hard, not going to lie. The hardest part is the unpredictability of my symptoms. We make plans, but it's always with the unspoken addition of "depending on how Kylene is feeling." I do my best to push through the symptoms I can ignore and live as normally as possible, but some days it's just too much.

So that's what gastroparesis looks like to me and my family. It can be hard, but it's not always bad. I've learned a lot in the 8 years of symptoms and 3 years since being diagnosed that helps me manage as best as I can. Plus, it also means I can have slurpees every day and no one gives me a hard time =P