Doctors, frustration, and ports, oh my. 

I had my immunology appointment on Tuesday. The doctor and his resident were both very nice and clearly want to make sure that they are covering all their bases. He seemed cautious and a teeny bit skeptical. I’m a little frustrated with that because he has access to the records where the doctors wrote that my parents and I are crazy, and that I was making my symptoms up. I haven’t seen those doctors in almost two years, and we have thouroughly disproved that notion with data, but he doesn’t know that. He suggested starting a few new medications in hopes of getting better control of the reactions, as well as some testing that we can do in order to move forward. I really wish that doctors who incorrectly treated me and caused a lot of problems were not still effecting my treatment, even in small ways.
I had blood drawn at the clinic, and it took three phlebotomists and five sticks (plus a lot of fishing around) before we had enough blood in order to fill the few tubes that the doctor wanted. Oh, how I miss my central line. My dad called the vascular surgery center this morning, and I will be having my port placed next Wednesday, rather than at the end of June. It was delayed because of the reactions, but it’s really kind of ridiculous to continue without a line when I’m needing access so often. I really trust the people who are going to be putting it in, and I’m confident that they will deal with any issues that arise during the procedure.
I had a reaction today, and was very close to needing my epipen, but luckily the medication finally hit and it started to calm down (thank goodness!).
I see several of my doctors in the next couple weeks, and I also will be traveling to Oregon for something I’m really looking forward to: I’m getting a service dog! I’m so excited to move forward with a new chapter of independence.

Unpredictable: the name of the game. 

Life with a chronic illness means a lot of uncertainty. A lot of waiting. It comes with the turf- I haven’t met a single person who doesn’t struggle to some degree with the uncertainty and the waiting game. Bodies are unpredictable, so we don’t know how we will be from day to day.
Recently, I’ve been struggling even more so with this. I’ve been dealing with severe allergies, requiring me to wear a mask and be extremely careful with what I come into contact with. Six bouts of anaphylaxis in the past few could say I’m a little on edge.
It can be quite scary and unsettling when you wake up and have no idea whether you will have a good day, or whether you’ll be in the ER needing breathing treatments and epinephrine. Additionally, sometimes it feels like despite all the difficult and dangerous symptoms, you and your medical team aren’t doing enough to fix the problem. Do not pass go, do not collect 200$.
I’ve really had to remember the past few weeks that I can and will get through this. These are some tips for dealing with it all.
One of the most important things to remember when you’re in this situation is to stay calm. Stress impacts how your body will respond. I know it’s hard to stay calm when you are experiencing scary symptoms (this is something I struggle with) but keeping your mind calm is helpful.
Distract yourself when symptoms are tough. This is something that helps me chill out when I’m worried or upset. Watch a movie, color in a coloring book, listen to an audiobook or talk to a friend. Find something that works for you, and use it.
Focus on the positives in the day. Small improvements are still improvements. This is so hard to remember, especially when it seems like you are sliding backwards. Even the daily improvements are a huge deal. Sometimes when I am struggling, I try to make a mental list of what has gotten better. This helps me stay positive and motivated.
Reward yourself. This is not easy! Dealing with symptoms and medical treatment on a daily basis is draining. Try small rewards that you can focus on and use to motivate yourself. For example, when I finish physical therapy, I will reward myself by watching an episode of a show.
Remember: your journey is your own. Comparing yourself to others and their health is not productive, and will just end up making you feel worse. Everyone has a different response to pain, to symptoms, and to stress. Someone you know may have similar symptoms but may have a completely different way of dealing with it. Always remember that suffering is subjective. There is no way to compare because everyone’s health is completely unique.
It’s not fun or easy to deal with unpredictable symptoms. It’s hard, and can wear you down mentally and physically. But remember… you have survived 100% of your worst days. You’re doing great.

Anaphylaxis Awareness Day!!

Today is anaphylaxis awareness day. 
I am celebrating by being in urgent care following anaphylaxis. As you can see, I always pull out all the stops for my parties.

If you are friends of mine, you should know that I carry an epipen. Most people who have an anaphylaxis or who have serious allergies carry one. It is designed to be easy to inject in case of a bad reaction. 

You should learn how to use an epipen, even if you know no one who has serious reactions- if someone has a reaction in front of you…do you want to watch them die just because you didn’t know how to administer it? 
So here’s how it goes. 

1. Pull off the blue cap(s). Some brands have two, and some brands only have one. 

2. Aim for the meaty part of the thigh. 

3. Stab. Like you mean it 

4. Hold it for ten seconds- count out loud if possible, that way the person may also hear it. 

5. Remove the pen. Some epipens do not have a retractable needle- be careful not to puncture yourself. 

6. Dial 911. (This is an important one, as epi only is a stop gap.)

7. Stay with the person until the ambulance arrives.

8. Congratulate yourself on a job well done. It’s scary, and you should be proud of yourself. 
Anaphylaxis is quite dangerous, and needs to be treated appropriately. But remember: epi pens are designed to be easy to use. You can do it! Additionally, most epipens have instructions and diagrams on the side to help you use them properly. When it doubt, epi it out!

For my fellow anaphylaxis friends: this is not easy. And it’s in no way fun. But you are not alone, and we will make it through. 

Speak Up

This story was initially published on Sweet Lemon Pies, a blog and website by an amazing advocate, Karen Richards. I’m honored to have had the opportunity to write something for her.

Go check out her website and blog!
Doctors don’t always know best. They are human, and sometimes they make mistakes.

Before I got sick, I trusted doctors much more than I do now… I believed that they would always find out what was wrong, and be able to use effective treatments.

I have come to find that’s not always the case… In fact, I would say that it is rarely the case.

Medicine has come a long way in the past 150 years, but there’s so much farther to go. Doctors don’t always know what is going on or how to treat it, and so as a patient, you have to be your own advocate in the medical world.

I’ve had doctors who don’t listen, who have downgraded my concerns, and have made me feel like I was not deserving of care.

Throughout this, I’ve had to learn to speak up for myself. Speaking up has helped me in all aspects of life, not just with my health.

These are some things I have learned to speak up for:

When you’re discussing anything with your physician, don’t take everything said at face value.

Ask questions!

“Does this medication interact with my current meds?” “What side effects should I be worried about from this treatment?”

Bring literature.

It’s easy to find studies online, and for some strange reason, doctors respond better to peer reviewed papers than to their patients…

Communication is key.

Doctors won’t know how to help if you’re making your symptoms sound less than they really are. I’ve done this. I’ve made it seem like things are better than they are, because I don’t want to annoy the person treating me, or make it my fault because I wasn’t getting better.

If you aren’t feeling better, maybe something needs to change.

Doctors won’t know this unless you tell them. Of course, there are barriers to change, such as lack of insurance coverage. However, in many of those cases, there are options, but the doctor won’t be able to assist if they don’t know what’s going on.

Remember: you are the one who has to deal with the side effects and the repercussions of treatment, not them.

It’s easy for someone to prescribe something and say, “See you in a month.” But you are the one who has to live with it every day.

When it all comes down to it, human error is just as prevalent in medicine as it is in any other profession.

We expect medical professionals to be perfect and mistake-free, and they’re not. Your doctor’s mistakes might be for a variety of reasons, but mistakes will happen.

Do your research. Let your doctor know when you don’t understand or agree with something that is said.

Speak up.

It can be incredibly difficult to disagree with the person in control of your medical destiny, but even forcing them to take a second look at something complicated can prevent and lessen the change of those mistakes being made.