I've had a very severe decline in my health, and my current treatment (intramuscular injections) for my Lyme disease is no longer working. Treating a very complicated case of Lyme disease along with multiple other tick-borne diseases is very difficult and it's common to hit a plateau (sometimes multiple times) during treatment. If one thing doesn't work anymore, then you have to try something else.
The disease is running rampant through my body and my shots are no longer helping. I'm in severe pain again and I have to push myself very hard just to function at a rather depressing level, but at this point I am still able to function and for that I am very grateful. I want to avoid at all costs going back to that very dark place where I am bed-ridden again and I feel like it's coming soon if I don't take action.
My doctor has been telling me for months that she thinks I need a PICC line, and I think I am finally coming to terms that it's coming to that. My neurological symptoms are very, very bad and sometimes I have great difficulty with my speech and I feel drunk. My memory is deteriorating rapidly and I am starting to feel like an Alzheimer's patient again.
I'm very, very, VERY scared of getting a PICC line, but right now it's one of my best options for remission. There are many serious risks involved so I have been painstakingly weighing the pros and cons, but at this point, my disease is winning and I am being robbed of the ability to function without severe pain. I am a fighter and I have not come this far to give up. I will do what it takes to get better!
This decision is not an easy one and I know that many of you will be very concerned by the risks associated with a PICC line and may not understand my decision to go this route (if I do). I still have many unanswered questions myself and much research to do before my decision is finalized, but I am leaning heavily toward this option.
Back to my experience with my horse, Fjóla yesterday. I drug myself out to the barn hoping a little horse therapy would do me good, but by the time I got there I was so exhausted I had to lay in the car with my feet propped up before I could get out. She saw me coming and came running and calling to me, which makes me smile no matter how sick I feel! I got her out of her pasture and really wanted to ride her, but all I could do was alternate between brushing her and then resting while she grazed.
I ran out of steam pretty quickly, so I put her back in her pasture and she did what she always does, which completely melts my heart--she stayed by the gate staring at me in disbelief like, "Are you sure you're done playing with me?!" So I sat down on a big rock in her pasture and she opted to stay by my side, instead of following her horse friends to the other side of the field. She stood as close to me as possible and I swear this horse was never given the message that she is not a lap dog!
So, since she apparently wanted to help, I told her my troubles. I told her I didn't know what to do about the PICC line and I told her how I was just so damn tired of feeling so horrible day after day. I cried and she nuzzled and snuffed my face and shared some disgusting bits of pre-chewed grass. (Don't worry, I lovingly declined the gesture!)
And then I said, "Fjóla, I just don't know what to do! What do I do?!" And then? She walked to her water trough, took a huge drink of water, came back to me and suddenly released the entire contents of her unswallowed drink of water/chewed up grass all over my lap! If you didn't know, horses can hold a lot of water in their mouth...
So, yeah, ask a horse a question and it may not be the answer you're looking for. But I got the feeling that she was saying, "Pal, whatever will be, will be. I can't decide for you; I'm a horse! But whatever you decide to do, I will be here for you, because I love you."
Playing soccer on Fjóla |
You've got the best friend there :) Praying for you!!! Hard decisions! I know!
ReplyDeleteThats cute!! It will all work out in the end! Love you!!
ReplyDeleteAlyson, I have been researching something called an Invisiport which you might want to look into. It is like a PICC line but it is implanted completely under the skin in your arm, which allows you to shower etc without the risk of infection because no lines are hanging outside of your body. I am facing the same decision as you and feel quite hesitant to move forward with the PICC myself. Google the Invisiport and see what you think. Always pulling for you girl. ~A fellow Lymie
ReplyDeleteThank you! I will look into the invisiport. :)
DeleteWhat a sweet horse. Oh Alyson, I am sorry you have plateaued. I hate that! I got a PICC in June. I have had it since then. I have been on many cocktails of IV antibiotics. My line has clotted once. I had to go to the ER. They made sure it was placed in the right spot. Then gave me some medicince to dissolve the clot. Pretty long night but simple fix. I had a kink in the line once. We simply had to redress it. My biggest complaint is my skin is deeply aggravated because of it. If you decide to go that route, I'd be happy to answer any questions if I can. You should research the invisport. I had a friend that had that. I personally am glad I got the PICC...but she is happy that she had the port. Different choices for different people. I think mostly it's preference, maybe. Ports may be able to stay longer too.
ReplyDeleteI hope whatever you decide, you have peace about it. Love to you.
Greetings! Are you mostly an often online user or you prefer face to face communication?
ReplyDeleteHi,
ReplyDeleteI have a quick question about your blog, would you mind emailing me when you get a chance?
Thanks,
Cameron