The days seem to be coming closer and closer to the day that I fly out to DC with Dave. I am starting to get beyond nervous. Beyond nervous is probably an understatement. I know what treatment can be like, and I have a pretty good idea of what it’s going to be like: not a lot of fun. Although I will be on new IV antibiotics that I haven’t tried, it is the same concept. I know that sounds like negative thinking. I think you all know by now from reading my blog and those that know me in person I am almost always positive, but I am just being realistic. My mind keeps reverting to some of the bad memories of the last time I was on oral antibiotics and the IV antibiotics, and for the period of time I was on both.
My mind is flooded with what I have gone through already, an overwhelming time spent at Dr.’s offices and hospital visits, losing much of my independence, and knowing what it is like to lose control over your own body and mind. There are three experiences that stick out for me the most.
The first memory I will never forget is the look of sadness on Dave’s face when he saw I could barely even lift a fork trying to eat my dinner at the kitchen table and was in a complete parkinson’s like state. He has been so strong through all of this and it broke my heart. The second is the day I “overdid” it by trying to rent a movie at my local grocery store. The movie that I had to desperately watch by the way, was the new “Twilight” movie that just came out on DVD… lol. It definitely wasn’t worth what I went through though (Dave went the next day to get me the movie)… I could barely make it half way to the machine then had to turn around and barely made it to my car. I had to rest in my car for nearly 20 minutes before I could make the five minute drive home to my house. Once I got there, I could not stop crying and ended up having a serious panic attack followed by a seizure episode that left me feeling completely paralyzed in a mummy like state, unable to move or speak. No one was home and that was terrifying.
I think the worst memory that I have, that I have never shared before, to anyone. I want to be honest with everyone reading, and I am gonna share everything, and not sugarcoat everything. I just think it is important to advocate and share how bad this disease can be, and be real with each and every one of you reading. The good, bad, ugly and ugliest.
I think it was my IV rocephin, oral flagyl combination. This combination made every night horrible: Nausea, I was pouring buckets of sweat at night, it was impossible for me to fall asleep, I was in a ton of pain and I had a lot of chest pains while laying down, like my heart itself was hurting. One night, my body was screaming at me, my legs, my bottoms of my feet, my torso, everything really. That night I had such horrible “heart pains”, I was gasping for air and didn’t know what to do or if something was really seriously wrong. I could feel my heart beat radiating through my neck and through my arm. It was a really scary feeling. It nearly led me into a panic.
I looked over at Dave while he was sleeping, and he looked so peaceful and I did not wake him up. I just couldn’t. I thought to myself if something was going to happen, maybe I would be lucky enough to die in my sleep. Dave does so much for me and I just couldn’t wake him. Even though I was terrified. That night, in that moment, I gave up. I did not care if I woke up the next day. I didn’t understand how someone could be in so much pain inside and not die. But I didn’t. I am still here.
Having memories like this is what makes me so scared of what is going to happen when I go back to DC and begin treatment again. I always tell people that I look at the treatment to be able to give me my life back and hope to be even better than the next time I go off antibiotics. And I do. It’s what’s in between that’s the scary part. I just got to look at the finish line and think of fun things that I have missed and being able to do them again and keep going strong. And not ever give up.
I wear this bracelet on my wrist every day. I wear it next to a bracelet that a very good friend gave to me that I have worn every day since she gave it to me for Christmas, that had a symbol that meant that I was a good and valued friend to her. Something so little on my wrist is a daily reminder to me when I am feeling down, scared, given up hope or feel like I won’t ever have my life back, it makes know that I WILL get better and I WILL get through this. I just I need to keep my sense of humor, positive attitude, and keep being strong. Miracles do happen. And they will for me.