Well, I survived my first big holiday during treatment: Thanksgiving, otherwise known as National Lymie Cheat day. I ate all the food I wanted to eat. Then I got a great big stomach ache. And then I got a great big neuro herx. I am back to my Lyme diet (and will not be cheating any time soon) and waiting for the hallucinations to stop. I honestly can't remember if I have shared about them before. They were one of the first bad neuro symptoms to pop up this last summer after I had a round of doxy for normal infection.
It is commonly accepted in the Lyme community that if you herx on abx, it is confirmation of borrelia. That is what ultimately lead to my blood tests and dx.
Anyway, I don't have tons to share right now. Still trucking. Still fighting the powers that be for assistance to keep fighting. My anxiety and visual hallucinations are more obnoxious right now then scary, at least for me, and only after the fact. In the moment of course, they are utterly terrifying. Some day when I have more energy, I will share more of the neuro Lyme experience.
Ok so what lead me to write today was a site called Lyme Spouse for the support of, obviously, Lyme spouses. I browsed it. It seems like good info for anyone living with a Lyme, married or not. It is a site that hopes to grow. I hope that those who live and love with Lymies are able to get some support from an understanding community.
Lyme is one of the quickest Litmus tests for people and relationships. It's unfortunate that it has been forced on us, but we are lucky. We get to know who truly loves us. Those bonds grow in strength and depth. I have never been on the healthy side of a Lymie relationship (I include all kinds: romantic, familial, and friendship) so I can only imagine how hard it must be to watch someone you love suffer and not being able to fix or heal the illness. Caretakers are often told to drop their Lymies. That someone else should be doing the caring. That they should be institutionalized or moved into what are actually emotionally unsafe environments with a relative who doesn't believe in Lyme or treatment. These actions would hinder treatment so very much.
So to those who fight with us and keep us alive so we can fight another day, thank you! You are not alone. Others understand. Your efforts do not go unnoticed. Trust me.
Thursday, November 15, 2012
Well, obviously I have been gone a while. It seems that the entire month consisted of preparing for one or two activities each week with all required days to get ready and then days to recover. All and all it was a decent month. My body has finally acclimated to the antibiotics, but I am having a hard time getting all the supplements in. My memory has gotten worse. Somehow, my spirit stronger. Though thinking about it, it is hardly a mystery. I credit my friends. I have spoken before about those not strong enough to handle this with me. At them, I am no longer angry. Honestly, I would walk away from this crap if I could. But I have learned who are truly my friends and they have become family. I hope they understand that once I get through this and they need anything, I will do my best to be there and help them. Even now, I can only give my voice, but I hope it's enough. I long for the time when I can safely take myself out of the house and drive to a friend's or meet them out somewhere. For now, the true friends are not begrudging me anything because I cannot. I get it now. I don't need or miss or cry over the ones who left. I celebrate the ones who are here (and who drive across the country to support me for a night).
My Alma Mater had an awareness event for me. Raised enough to get me one more month of rent. But at the end of the night it was not the number that mattered to me. It was the reminder that I am their "sister". They love me. They think and pray for me. They haven't forgotten. They believe me. And they will be there when I come out of this.
See before this event, I was struggling. Not the normal, I hurt like hell and can't eat, sleep, or move kind of struggle. The "I don't know if I am worth this fight" struggle.
That is the one to watch out for. I worried that I had become so jaded to "friendship" and cynical about the painful effects of it that even if I did survive, I would come out the other end alone and unable to trust anyone. I feared that I would only have the friends by whom I felt abandoned. What kind of life is that to fight so hard for? Answer: none.
I was right though. I had hardened by the experience of friends walking away. In the end you must find your worth in yourself, but if you have no one to share the good of life with, it is hard to value the good in yourself.
I was wrong however, in calling those people "friends". Even without Lyme, I am a tough person. I don't let people mess with me. I am outspoken and I will always fight for what I see as right or good. Some people cannot handle that. They just can't. We are too different. I had forgotten that side of me. Until I went back to school to see my "family". Suddenly, I fell right back into my true self, the one I had become afraid to be by threat of being left alone. These people celebrated me. They focused on who I am, not what I have. I suddenly remembered.
Yeah, I am a fighter. Yes, I will win this war. I have so many more people behind me than I realized. Sometimes you just need a reminder. A call, a text, a fb message, a coffee date, or a large get-together. I know what I am fighting for now. I am fighting to experience life with the people I love who love me back.
Now that doesn't mean that each moment isn't a struggle. It is. I still feel awful. I still have to choke down food and meds. I still cry and wake myself up shouting in pain. I still haven't gotten SSDI, I still have things to pay for and no income. I still hate that I must rely on donations until the SSDI comes. And I still panic about where and how to get help. So please, if you have read this, post the link to my fundraiser (upper right hand of this page) on your Facebook or Twitter or blog and ask your people to help in anyway they can. Even 5 bucks helps. If no one helps then I can't pay for treatment and housing. If many give just a little, it helps me vastly. One less medication to worry about affording... and so on.
A special shout out to George, Keenan, Dr. D, Marci, Andrea, and as always, the one who keeps me alive day-to-day, Sam.