Wednesday, April 29, 2015

What Not to do or Say to Me

I am having the most stressful week ever.  This post isn't gleaming with words of encouragement, it's basically me taking my frustration out on others, and I'm not going to apologize for fucking complaining every once in a while!  :)

Stop doing these things and start treating me like you would pre-Lyme.

1.  Don't say childish comments when you see me taking 50 pills.  I may have to take these pills while out on the town, gathering with friends, on a spin bike, at work, or in restaurants.  I'm not trying to get attention I'm simply trying to live my life and kill Lyme at the same time.  Keep your childish comments to yourself and try not to bring negative attention to the situation.

2.  Don't leave me out of everything.  Yes, I am sick.  I may not be able to do a lot of the things I had in the past.  But when you don't even try to include me, then talk about it all the time, it isolates me more, and makes me really sad.  I'm still here, just sick!

3.  Don't at any point remind me that I am physically limited.  I will punch you in the face.  I work in the environment where people aspire to be strong and fit.  I am around it all day every day. Trust me, I know I can't do the things I used to, or may not look the way I want to look.  But you do not have to tell me!

4.  Leave my diet alone.  Do you think I enjoy being gluten free, dairy free, grain free, sugar free, most fruits free, low fodmop, low glycemic, nut free, all my millions of allergens free?  Over the course of the last 5 years, I have had to eliminate all these foods.  This is something I have to do or I can't function.  I will most likely eat like this forever.  It's not a big deal to me anymore and it's none of your business what I eat.

5.  If I tell you, that you have Lyme disease, don't laugh, because I'm not kidding.  I'm basically the Lyme and co-infection whisperer.  So take my advice and get yourself help, or you will be sorry.

6.  If you really don't care how I am, don't ask.  Plain and simple, you don't listen anyway.

7.  If you do ask me how I am, don't start squirming and acting really uncomfortable when I start telling you exactly how I am.  Awareness has to start somewhere.

8.  Don't judge me.  Whether you know I have Lyme or not, stop it.  Don't judge anyone, you have no idea what people are going through.

9.  Don't treat me like less of a person.  Seriously, I'm sick and in pain, but I work hard to maintain a normal life.  I can still do my job, I can still communicate with people, I can still have a social life, I can still do a lot of the things I could before.  So do not limit me to things. This happens on a daily basis, it sucks and makes me feel under appreciated and discarded.  I'm an actress dammit, I hide things really well.

10.  Stop talking about how I look.  Don't tell me I look tired, look so much better, have less puffy eyes, look sick, look skinny, look healthy, should be thinner, have a better complexion, look like you have jaundice, have red eyes, a swollen joint .  I didn't realize that having Lyme disease opens the door and allows others to comment on your appearance and say things that you would never say to anybody.

You should watch this.  She did a great job with her Lyme challenge.

Thanks for reading

Wednesday, April 22, 2015

There is a Name for People Like You

"There is a name for people like you" said my LLMD  on my fifth office visit.  I forget the name she used... of course, that's my Lyme brain being forgetful.  She says she sees them pass through her office every once in a while, like dynamite on 4th of July.  She also knows the minute she meets someone if they will succeed with treatment, and she can tell in an instant if your significant other gives a fuck about you and your Lyme disease.

The type of person I am, is the type of person sitting across from her in pain, asking for more pain. Treatment for Lyme is weird.  You want your body to feel an immense amount of pain, for herxing purposes, then you want to up the ante, because you know you've found a good drug combination, that's killing the bacteria off.

My LL informed me that few people my size can tolerate the amount of medication that she gives a 200 pound man.   I smirk, because I know I can, and in an instant, the dosage goes up.  I've coined the catchphrase, "I'm the strongest Lyme patient everrrrr."  This phrase might come giggling out when I'm physically exerting myself, or I might think it, when a needle gets shoved in my ass.  Physically and mentally, I know I am.  Although, we all are.  Anyone fighting Lyme disease with all they've got are the strongest Lyme patients ever.  I am speaking about the ones doing everything they can to get better, the ones who want to get better, the ones who are taking this experience and learning and growing from it, the ones spreading awareness, making change, fighting to remain positive, building strength the best they can, letting go of what's out of their control (I struggle here), and the ones who see a future of health and happiness.

Don't get me wrong, I cry almost daily, but it's what comes after the cry that's the defining moment...the smile.  It always comes back.  I think I read that somewhere or heard it in a song, it's true. 

If you are going through a challenging time in your life, what helps me, is to surrender to things that are out of my control.  It is my biggest challenge and I work on it daily with baby steps.  It's a challenge for me because it feels as though I am accepting being ill, like I'm throwing in the towel.  I get out of that frame of mind by self talking myself through the situation.  This helps me to see the difference between acceptance and surrender.  One of the hardest things for me to witness right now are healthy, carefree people out living life, doing the things I am unable to do right now.  I also struggle with having a limited energy supply (I never would have thought I'd run out of energy :).  So I try to be in the moment, no matter how shitty that moment is and have trust that I will not be ill forever, and that I'm only temporarily limited in things.  When you surrender it brings about opportunity and opportunity brings change.  

I love visiting my doctor, we see each other about every 6 weeks now.  She risks losing her medical license daily, in order to help myself and others seeking out long term treatment, for something the CDC says doesn't exist.  When I visit, I get a medical treatment plan that is going to get me better, advice on men, women, and everything in between. She recommends these books.... 

She says they've changed her life. My orders in, I'm just waiting for them to show up at my door.
She's a tough lady, she's had Lyme herself and knows first hand what her patients are going through. It's the first time I've ever felt truly understood by a doctor, not that I seek to be understood necessarily. It just helps to have somebody fully understand what is going on in my body.  Maybe it's just a good feeling to have somebody ask you all the right questions.  She is the only single person in my life who really understands what I'm going through.  I look at her as a mentor and I think she looks at me as a mentee.  

My latest video is below, I'm getting a Bicillin injection.  I don't really feel like writing about Bicillin injections at the moment.  But please enjoy the video :)

*Good news*  I found an amazing primary care doctor (1 in a million), who is willing to rewrite my Bicillin injections to help try to get them covered by my insurance company.  The insurance will also only cover them if they are administered at the hospital...which I don't really get why.  Any nurse is perfectly capable and allowed to do injections anywhere.  Still waiting to hear back, but that would be great!

Thanks for reading!