Okay so today has been absolutely insane. I am writing tonight from my heart. This is what it's truly like being in my shoes for the day.
The beginning of the day I stuffed envelopes for the walk and lined things up for the meeting that night.
Physical therapy went very well today I did very good and learned to walk with a cane! It was exciting and I even added some wrist band sweatband thingeys to my Physical Therapy wardrobe. I worked harder than I had ever worked before on the bike and I worked with all I had. I did a lot of different things and it was exciting.
I felt a little better after physical therapy and was noticing improvement. I was noticing little things and I felt like finally after so many days of not feeling myself I was beginning to notice a step in the right direction perhaps a glimmer of hope.
I began to become a little weary and soon I was teary... I was not feeling so hot and I had a meeting to run for the walk that night. My IV was taking a little longer and everything started to spiral out of control. Soon I didn't know if I could be on time to the meeting- I was supposed to be there at 6:15 to meet Sarah so we could talk. Being worried about the picc line my mom was to change my dressing and she was and as she changed it I saw something that made my heart flip. There was puss coming from the site and I was scared to death. Infection in a picc is not something to mess with. My mom called the hospital did everything she could and I was worried that this picc would be out quick and a port would be the new form of treatment.
I am scared to death of getting a port- I am scared of every aspect of getting a port and no matter how much good people tell me about the port's I am probably still going to be scared.
My mom covered my dressing but upon covering my dressing we noticed a little ghostly looking airplane shape on my arm where the white airplane had just been.... We noticed wherever that was placed it was killing the skin beneath it and causing fluid to seep from the skin. My mom and I both began to think I was allergic to the line itself.
I was overwhelmed and for the first time I couldn't be strong I couldn't tell my mom I was okay and I began to cry and cry. I was so upset and so frustrated why can't anything just seem to go well? After all the hospital has told us that there was only one other case like me and come to find out after they figured out what was wrong with her picc she died! I was so overwhelmed with emotion yeah things weren't going smooth and I had a meeting to do and I was not ready for it at all.
I was frustrated with everything and an emotional wreck and I didn't really even want to go to the meeting but, I had a lot of stuff to deliver to the meeting so I had to go. So coming late I went and I didn't plan on staying long...
I handed out what needed to be handed out. I was in tears yet again and man there was no stopping them for the first time in my life I wasn't able to be strong and I felt horrible and my picc line was scaring me and yeah I didn't know what to do or who to turn to and I was crying in a room full of people! I was embarrassed to say the least and yeah tonight just wasn't turning out to be such a good night.
I wanted to disappear and then my mom got a phone call from the hospital and I had to go to the ER and let me tell you that's my least favorite place to go and everyone in there is so sick! Thank God they worked with me and got me a room quickly I was loosing my patience and loosing control of my calm quiet attitude I can usually obtain through these ER visits. I was stressed to the max and at any given moment I would just burst into tears. I just want to be a normal teen I wish my health was better and why the heck do I have to be back in the ER once more? I didn't understand and I couldn't figure it all out I was so sick of all of this medical junk. I just wanted out of that place out of the hospital and I wanted to be free of my IV and on with life.
Of course this isn't what was going to happen and the IV therapy lady had to come down and yes, it was one of them I knew come to find out I know all of them now and all but one has put a picc in me. I was so overwhelmed with everything by the time she got there I didn't even recognize her but she recognized me. I am a one of a kind patient with so many allergies and different problems and after all I have now been labeled a "complex case". So yeah everyone in the ER can know me by name they know my story and they can tell when I am not having a good day. I begged to keep my picc in over the weekend and they're doing all they can to do just that.
They cultured the puss and they put a special cream on it (something we know I am not allergic to!) they are going to re-evaluate the situation tomorrow morning and see if it has changed for the better or if it's heading for the worse and depending on the sightings from tomorrows evaluation depends on if I get the picc pulled or it stays in. Although since the IV team believes that I am allergic to the line they will probably have to take this picc out and I will probably end up with a port.
My life has been spiraling out of control and yeah there is no stopping it because when life takes over- all you can do is take it as it comes.
I had texted a few friends and I find it's even hard for them to keep up with my constant changing situation and it's hard for me to constantly update everyone. I don't know what to do and I feel completely lost. I keep praying and I know that God will pull through. I just don't know why this isn't working out better. I have seen many of my friends take the easy route out and they have drifted off and kind of are on a touch and go basis we talk a little here and there and a lot of the contacting is done by me. I miss all of them so dearly but my medical life is sincerely taking over!
I feel like I am in over my head. I don't know it's just an extreme thing and this just goes to show you that an ordinary day can be changed so quickly into a trip to the ER and a fast paced slip down hill. You can think you know what's going on but really there is truly never a dull moment. I miss my friends and it hurts me to know that they are all going on with their lives they are all going on with what was meant to be and all I can sometimes think is- that could be me too... If only I were healthy.
It's hard for me to understand or even comprehend what is going on in my life right now and yeah tonight is a real deep reality check for me and there were not many inspirational things said or happy moments as the day progressed. Things weren't easy but I got through them. One thing was said today that made me cry and that is that one of my Lyme mothers told me I was going to find a man and someday be married to a guy who cared for me and loved me and really genuinely cared about me and what I wanted to do. She told me what an amazing girl I was and comforted me and let me tell you sometimes that's all I need because I am so hard on myself I don't see the things others see. Yeah I was at the bottom of my bucket tonight and to be honest- I am only sharing this to you because-
beneath the surface of a happy face is a hurting child and I am not 100% happy and cheerful and even though I am not in the hospital my life isn't a perfect puzzle.
I am struggling each day and some days it's difficult to even get out of bed. I just miss being who I was before this disease even happened and I can't wait to be better. I want to make a difference and I am sick of being stuck home due to some medical condition or having plans ruined because I got too sick or having people fear me because I have had some not so ordinary things happen to me.
I would normally apologize for being such a mess, but I am not sorry because this is really what it's like and it hurts a lot. I don't know what the next minute or hour holds for me but I do hope it's peace and sleep because it's been a long day and I have a feeling the next few days won't be easy.
So this is a glance of what it's like to be me. It's not fun but I try to make it fun as much as possible and I try not to dwell on the horrid things that happen but tonight that's all can do because I am a mental mess and I cannot stop crying because I am so sick of being the sick kid.
More positive days to come,
P.S. There are a few people I would like to put on the spot-light but because my mother said she didn't want lies on here (even though they aren't and she really is an amazing woman) I will not include a bio but tonight- My parents are my spot light people and they are truly amazing because there are very few people who have been able to stand by me for the last 3 years of my life and they continue to support me and love me.with all they have and without them I would be nothing. So they are the spot-light people.