I have been avoiding blogging for as long as possible. I considered never blogging again. But my journey is not over. I still have so far to go and so much to say to help others. Prolonging sharing will only make it more difficult for me, so here it goes…
Instability. Balanced. High. Low. Hopeful. Disappointed. Up. Down. There have been almost no plateaus. Its been a constant rollercoaster of emotions and events in the last 2 months. My mind has been a chaotic mess. I feel lost. I feel raw, exposed, vulnerable, emotional; these are all new and uncharted territories for me. Its like every nerve in my body is exposed and anything can trigger pain and/or emotions.
My second round of dosing was extremely tough on me. After transitioning to oral antibiotics in January, I got a false sense of relief and when I went back to dosing again, I was in no way mentally prepared for it. By the second week of dosing, my body had joined forces with my mind in that they both were protesting against me, begging for me to quit. It took me longer to recover from dosing than usual. I got a long break afterwards because I had to wait to get into the doctor on a day that they could see me and then get me an appointment to have my central line taken out. It ended up that my line had to be taken out early (mid February) because it was possibly infected. I was so glad to have it out. I have just a very small scar that I will wear proudly as badge of honor. (Let me tell you how excited I was to take A REAL SHOWER! Not just bathing, but an actual shower! I stayed in there and just let the water beat on me until the hot water ran out. It was spectacular!)
Going back to the doctor 2 weeks ago, I found out that my gallbladder may have to come out. Let me explain this because if you end up in the situation I’m in you might need to know this because I haven’t yet found a surgeon who is Lyme literate and is willing to listen to the reasoning behind my possible gallbladder removal. According to my doctor (and what research I’ve done on the internet) Lyme is often know to form a “pocket of infection” inside your gallbladder. It can cause too much or too little bile (which is produced in the liver but stored in you gallbladder which releases it into your system to aid in food digestion) to be released. I was sent for a HIDA scan. It ruled out any acute (or immediate) problems but showed that after I consumed a fatty substance (given during the test) that my gallbladder is releasing 83% of the bile in my gallbladder (normal is around 35%.) This is called an ejection fracture. I have had 2 solid bowel movements since June of last year. My doctor believes that the over releasing of bile may be a reason for my bowel problems. I, personally have not ruled out the possibility of C-Difficile. I had a major bout with it 2 years ago (once you’ve had it once your chances of having it again go way up) and with antibiotics being a known cause of C-Diff, it is a possibility. It could also be the 2 together causing the problem. Now I’m in the process of trying to find a local surgeon and a local gastroenterologist to work WITH me to figure out what is going on. Keep in mind I’m dosing again now. Even though I was more mentally prepared this time, it’s still been difficult both mentally and physically.
I’m going to attempt to explain what is going on inside my brain, something I’ve tried to explain to my “friends” but only a select few seem to get. Right now my brain is healing. Because there was SO much damage done from all of my diseases, what normally takes a long time is taking much longer in me. Physically I’ve made great strides already, but the brain is always slower to heal. I’ve talked about my left brain connecting to my right brain and being emotional before but that was just the BIG stuff, stuff I could process logically. I’ve moved more into the “finer” details of emotions. Before treatment all I knew was anger and I knew it well. I had my walls built up and knew how to defend myself and now I’m just a child (metaphorically speaking) experiencing everything for the first time and not knowing how to protect its self. I have mood swings. I over or under react. I still search for words often. Texting is hard because I cannot convey what I actually mean. Face to face conversations are best for me because it easier for people to “see” how “sick” I am, to read my facial expressions, to ask for clarification and for me to read other people to make sure they actually understand me. Just because I put on make up and get dressed or do my hair, these are “chores” for me. So when people can see me and see how I struggle they tend to understand a bit more how difficult life is. They can see how easily I cry or get upset or happy. Face to face helps me tremendously and it helps others understand better, to see my struggle. It also helps me in acclimating back into society, being around people again, when I’ve been so isolated for so long.
Yes, I still have the intelligence of an adult but I am fragile. Lightweight and breakable with just the slightest bit of a wrong touch. I need to be treated as such. Those needs are not being met by most of the people who are left in my life and in the last week some of those I considered to be closest to me, smashed me on the floor and left me. I have been through a lot in my life, I have survived, just as I will this. Only this time, I will be stronger because I am continuing to learn about the toxic people and how they show their true colors. I’m walking away and not trying to mend fences I once would have. I have set my boundaries and I’m sticking to them. In all of this, there are 2 things that remain constant – changing and learning.
Yet another reason I have not blogged is because I knew I could not write a post without including one of the hardest moments of my life – losing my precious Carter. He was more than any dog I’ve ever had, he was truly a child to me, a partner, a companion, a teacher and the one thing I could always count on. I thought I’d be an absolute basket case but I’ve handled it much better than I thought. I knew it was his time to go and he was ready too. I stayed with him till the very end. Yes, I cried and I still have my moments – its to be expected – but in the moment I felt such peace in my soul because I knew that he was free of the body that contained his soul and he could now move on to be with my brother and to be without limitations.
With those closest to me knowing what he was to me, the bond that we had, my closest “friends” (with 2 exceptions) never bothered to check up on me after the day he passed. They didn’t bother to ask how I was doing. (Keep in mind I started dosing 3 days after and had a sinus infection on top of all that.)
What is my point in this? It’s not to call anyone out. It’s to let people in treatment know that you will lose some of the people you hold dearest, they will become toxic for you or they will get “tired” of you being sick or that they will constantly doubt you. What you need to know is that it doesn’t make them bad people (all of them anyway.) Some are weak or jealous or self involved or will never understand. It doesn’t mean that you have to cut them completely, you just need to keep your distance until you are better equipped to deal with them. Being sick will change the dynamic of your relationships. I was always the fixer and I was always everyone’s personal counselor or cheerleader. But when I need it I have only a select few that have stood by me through it all, through being sick and the mood swings and the soul-searching and all of the rest of it. What I’m learning is that its okay. I’m evolving and so are my relationships. My priorities are completely different from they were and different from most “normal people.” Even sick, even confined to bed, my heart is more alive than it has ever been. I might be on an emotional rollercoaster but my morals and principles and soul and heart are still strong. I am still basically who I was, the person I hid from the world, but now I’m free to be that person all the time. I have no time for negative bullshit and drama and jealousy and intentional hurt. I am granting myself permission to walk away when I need to. I have begun working with a therapist again. I am praying and meditating. I am learning to “be” in silence and in all the “noise.” I am learning to accept my limitations but not be discouraged by them. I recently read “The Spoon Theory” (I’ll attach the link below) and am learning to use my “spoons” wisely.
I want to send out a special thanks to 2 of my dearest friends. Amber, I love you beyond words! You get me, even as messed up as I can be! Thank you for you continued love and support, especially over the last couple weeks/months. Stacy, our talk was so incredibly uplifting for me! I enjoyed every minute with you. It was so wonderful to see you again. You’re the friend who I have that I know loves me without a word spoken from either one of us! I love you more than words can describe! Also I love both of your “boys.” They melted my heart!
This is the link to The Spoon Theory. It is a great article for those with a chronic illness and those who know and/or love someone with a chronic illness
Great blog. I hope you are getting closer to full health and happiness. I blog as well, creatingreality1.wordpress.com. I also wrote a book about my experience, which is culmination of my blogging and my journey through Lyme Disease: