Its late for me to be writing. I am swimming in the thoughts that have been brewing all day. Even though my brain is ALWAYS worse at night than first thing in the morning, I’m getting it out (my iPad and iPhone are taking forever and my OCD says that I can’t go to sleep until they are done.)
I was pretty upset after my last consultation with my doctor. Finding out that my Babesia has resurfaced and that I was in many ways, regressing was a real blow for me. I had it in my mind that I was going to be in remission by September (October at the very latest.) Finding out that I was going back to the hardest protocol of my treatment was a kick in the teeth (even if it wasn’t through a PowerLine/PICC line in my chest.) I spent last summer being sicker than I ever had and it looked like this summer wouldn’t be much different (there’s definitely a lot less crap to kill off.) But I pulled the old Scarlett O’Hara “I’ll think about it another day.” For the past 2 weeks I’ve tried to keep that mentality as much as possible. I was able to make it down to my Dad’s house (had the best visit I’ve probably ever had!) I took some time to do what I love…garden (with all protective equipment in place-long pants, high socks, light colored clothing, scarf to cover my head, DEET, etc.) and promptly washed all clothing in HOT water when I was done. I did more physical activity than I have in so long, that I can’t remember. I went to the zoo with my mom, my Aunt Linda and my cousin Kim. I was sore as hell that next day, in fact it took me about 3 days to recover from the zoo and my dad’s, but I did it! I even managed to go to New York City! I went with 2 friends who despite all my “annoyances” from being the sick girl, handled me very well. (I will admit my brain was severely off in NYC, I was having a lot more trouble with word retrieval and memory and completing thoughts) I think they may have only wanted to strangle me a handful of times. We got back last night (and I got 2 of my tattoos touched up in Staten Island on the way home at Bullseye Tattoos.) My body was done by the time we got home. (p.s. My official Halestorm Fan Club stuff arrived and I was uber excited!!!!)
I did take all my meds (daily and as needed for pain.) But I wasn’t so great at making sure I was resting enough or sleeping as much as I needed too. That coupled with standing and walking and excitement…I crashed last night.
Today is my 1st day back at dosing. It was the first time, in a long time, that I actually just sat in bed and cried in pain. I also blacked out/passed out at one point in time and for most of the day, both of my legs kept giving out on me (one or the other or both.) So along with feeling absolutely horrible from dosing, everything that I would think about another day, decided to set up camp.
I think I’ve done well at being positive (as I can be) through treatment and trying to look on the bright side. (Its probably why I get so irritated when people tell me to “cheer up” or “it could be worse.” Yes I know things can always be worse, I don’t need it reiterated.) Yes, I have my dark moments, suicidal, lost, wanting to quit. But I keep on fighting not just because I have to, but because I want to. I have never looked at myself as old, an old soul maybe but never old. All I have ever wanted in my life was to be married and have children. I’ll be 32 soon and I thought I’d be done having children by now. I know God has his plan for me and all of this is for some reason. But with the delay in getting to remission and maintenance meds, its hitting me like a ton of bricks. We went to NYC and one of my friends kept telling me to keep my ovaries quiet. It doesn’t help that everyone I know is having babies. I celebrate for most of them (except the dumb asses who should NOT be procreating, at least at this point in their lives if ever.) I know that sounds harsh but some people have no parental instincts and you know the ones I’m talking about. Yes, they love their children but they will never discipline their children or they’ll be the obnoxious little brats that everyone gets away from as fast as possible.
Anyway…back off my tangent. Its been tough for me to handle. I’m really not well enough to be dating, let alone having a child. I could be irresponsible and just go get “knocked up” and not care about infecting my child or anyone else in the process. But that’s just not me. I want to fall in love. I want to have child conceived in love. I want to be married. But even with all that being said, I want my “family” to be as healthy as possible. Just because I am sick (and there is a high likelihood of my “family” being infected in this area anyway) I do NOT want my family to be sick. I want to give my child the best chance at being healthy. I don’t want to transmit my disease via sex with a partner or through the umbilical cord. I am as holistic as I can be. I eat incredibly healthy. I want the best for my child(ren) and give them the best footing to launch from in their lives. Having a child, for me, is not just “what I’m supposed to do” its something I WANT TO DO. Yes, I know people are having babies later and later in life, but for me its just a reminder of what this disease has taken from me. Maybe things would have worked out with that ex, if I wasn’t sick. Who knows?! I can “what if” and “maybe” things to death (I have an extremely over-analytical mind.) Believe it or not, as much as I hear my ovaries screaming at me and my biological clock ticking, I’m extremely lucky to not to have to take care of my children during the worst part of treatment (including now.) I know that I will have flare ups throughout the rest of my life and there will be no ability (even if I wanted to) to hide my diseases from my children. Every family has issues, there is no such thing as normal, I’m extremely blessed that even though I have a chronic disease, that its not worse, that I will have periods of remission. I might not be able to just have a normal pregnancy, I’ll have to be on a specific protocol while I am pregnant, I can still get pregnant with almost a zero transmission rate to my baby.
While baby thoughts have been flooding my brain. I think of the children that have suffered and it makes me want to break down in tears (they’re welling up in my eyes now.) I want the government to address and fix a disease that they unleashed upon the American people and then refuse to give us adequate treatment.
I am grateful for this disease as an overall whole. Its been hell but its made me a better person and has taught me to continue to evolve and strive to be better not just physically but, emotionally, spiritually and a better human being. I’m learning to define and enforce my boundaries. Sometimes I feel like a terrible grandchild for not seeing/calling my Grandmother more. I love her so much and I want to be able to share that with her. Sadly, she has some age related brain issues and I never know what side I’m going to get. I love her any way she is. I know that the day may come sooner rather than later that she may not remember me, so time is precious. But sometimes I just can’t handle her. Even though it eats me up inside with guilt, I need to take care of me and I know that’s what she would want for me. So I call when I can handle whatever she has in store for me and if it gets to a point where its damaging to me (I finally understand teenage angst) I simply and politely end the conversation/visit. Its hard. But if I sacrifice my well being for hers, then I can’t be there as often because the stress makes me sick for days. I’m working on striking balances and with the help of a counselor, I’m finally sticking to boundaries. I’m trying to remember that its quality NOT quantity that matters.
I hate saying I’m sick (with the exception of “Sick Individual” because of the Halestorm song.) I hate living on last minute plans, but I have to live on them because I never know how I’ll feel until that time comes. I hate all the side effects. I hate everyone looking at you different when they find out or feeling so left out or tossed aside or having to educate everyone about my disease and “How are you feeling?” (“Like shit just like the last time you asked me.”) I do try to use phrases like “Today isn’t one of my better days.” “I’m better than yesterday/last week/etc.” “I’m sore, but having a good mental day.” I keep it as nondescript as possible because no one is ever going to understand it until they have been through it. I find that doing it that way usually doesn’t make people as awkward to come up with a statement/question AND it keeps me from having to answer tons of tons of questions. I like the comparison of famous people. When you’re famous, in this day and time, you accept that your public life is open forum (although I don’t personally think its fair to be judged on your every move just because you are using your talent.) I feel like because I have put information, my journey, out there for public knowledge of my own experiences and therefore whether I always like it or not, people have a right to ask me about my life (my health HAS effected every aspect of my life.) I am the loudmouth who is impatiently waiting for the day she is well enough to advocate. I can’t shy away in a corner or down play what I actually go through, because someone, somewhere out there is going through treatment and wondering if they are alone in all of this or if they’re crazy. I do feel its my responsibility to talk about this because I don’t want ANYONE (whether I love you, hate you or never met you) to have to go through this! All it takes is one person to start talking. And then you find out some one else is talking too! And its all those lone voices, that will stand strong and firm and make a change.
If you’re reading this and are suffering too (or know someone who is,) know that someone is praying for you in many ways.
Also, please say a prayer for my friend Davy. He was just diagnosed with a major health issue. He still has to find out the plan, but he’s fighting too, just like us. He is actually a true gentleman. One of the nicest guys, I’ve had the pleasure of meeting.