Well I know I haven’t written an update in long time and the longer I leave it, the more I forget! Reviewing this, it is obvious I am at no shortage for words, so hopefully I’ve included all the juicy details! (If you finish reading this, and you’re bored, thinking, “that was considered ‘juicy’??” please assume it’s because I left something out!)
It has been 3 1/2 weeks since my PICC line was inserted, and it has finally reached a point where it isn’t constantly hurting and/or bleeding every time I move. I am glad to have passed that stage; it was upsetting, and not at all what I expected. I was quite disturbed by how foreign it looked and felt; how painful; and, how painfully obvious it was that I am sick. Up until a few weeks ago, there had been nothing really physically distinguishing me as ill. In fact, if I mustered up the strength to get all dolled- up, those who knew of my illness would likely think I was on the road to recovery. And while I suppose an arm is easy enough to hide, I still feel “marked” somehow. Even so, I am grateful the skin around this alien device has almost healed, and it is slowing becoming a member of my body. I would like to say it is an unnoticed member, but the plastic and layers upon layers of tape bandages, along with the crawl-out of-your-skin itchy feeling, and being unable to lift more than ten pounds are all near-constant reminders of its presence.
I was sent the prettiest package of armbands from my dear friend Ruth (pictures in the last post). They were custom knit by a fellow Lyme patient, softer and more comfortable (not to mention, attractive) than the burn wraps they send you home with from the hospital, and I am living in them!! I am sure they are a bit curious looking despite how attractive they are; so, if you see someone on the street with a knit tube worn around their bicep, they either have a PICC line underneath, or we have started a trend!
I started IV antibiotics the day after surgery, which is partly why I haven’t written much of anything since. I have been sicker than ever: my pain is worse (meds accordingly increased, which helps a little), I've been sleeping almost all day, waking only to eat and go to the bathroom, and then back to sleep until the evening-time. I still have the drive to stay up later than I should, but overall I was clocking in around 17 hours a day of sleep per day. I get hooked up to my IV meds 2 x's a day for 2 hours each time. On Tuesdays and Fridays I get extra fluids, so I am hooked up for three, 2 hour, intervals. The unfortunate thing is, in a carpeted home with five sets of stairs, it is really difficult to get around (not that I feel well enough to, anyhow!) I have tried to do other things while the machine runs, but it gets angry and beeps at me for kinking the line by bending my elbow! I have learned to sleep with it running, so it isn't terribly bad. Apparently I am “lucky,” and faring better than most; although, the second month is foreseen to be worse as the bacteria will have come out of hiding and there will be more to kill off.
The one day I don’t get to sleep in is Tuesdays. I have to leave the house once a week to get my dressing changed, so that has become not only “dressing change day”, but also “coffee day” too. (On a side note, it is amazing how effective coffee is when you only drink it occasionally. It is by far my favourite drug “sometimes” food in our diet). It is a little crazy how important it is to keep my PICC line sterile so it doesn’t get infected, although understandably so; if it does, it will have to be removed and reinserted only after the infection clears up. So every Tuesday, Matt wheels me into the hospital to have my dressing changed, and the bandage that I just comfortably wore into the crease of my arm gets removed; everything underneath gets sterilized and swapped out (except for the PICC tubing itself). I am really nervous about infection and having to get a new line in/have my treatment set back that I am glad to do it, really. And the nurses there are so kind; they make it as pleasant an experience as possible!
Part of my paranoia stems from the day of my surgery, when a woman was in getting her PICC line replaced for that very reason; somehow, it had gotten infected, and had to be removed and replaced. We sat there, waiting, and I was feeling surprisingly calm. Our lovely neighbour-friends drove us and were there to reassure me, as they had been down this road before. The husband of the Lyme patient in the operating room was a friend of our neighbours as well, and he sat in the waiting area, tapping his foot, waiting beyond what the surgeon had said would take “two minutes”. The time for my appointment came and went, and some speculation was starting to surface within the small talk being made. Sure enough, a nurse came out, pulled the husband aside, and said (audibly), “she’s having another one of her seizures; we can’t finish today.” So they wheeled her out, right past me, having the most violent seizure I've ever seen! So much for me not worrying! Less than a moment later, the same nurse came out: “Mrs. Thiel? We’re ready for you”. I had brought my rosary to pray in the event my nerves did get the best of me, but (as my Grandma would say) I was scared “spitless”; so badly that I couldn’t remember the words to the prayers. So instead, I pulled out a tiny cross, a gift that had often been held by stronger hands than mine, and clung to it for dear life. My procedure took longer than the estimated two minutes, but thankfully all went well, and continues to so far!
We have had some visitors here; our friends from down the street, of course, and the parents of a good friend back in Edmonton. The activity hasn’t been to the same amount or type as it was back home though. I am lonely, and I miss everyone terribly. So far, time is dragging by. Matt left for work yesterday evening, bringing his 3 months of stress leave to an end. I was so sad to see him go! On the bright side: my in-laws are here!! And I couldn’t be more grateful that they are. With them, they brought a sense of home; a lot of comfort, help, and joy (along with many items we forgot back in Edmonton, and presents for Jack!) And Jack was skipping and dancing and waving his arms in excitement to see “Papa!” (That is right, it is spoken each and every time with an exclamation mark—that boy sure loves his Grandfathers!)
Yesterday morning we had our 6 week check-up with Dr. Ryser . We drove the 5 minutes to our Doctor’s office here, and made a conference call to Kansas City. Everything is going better than planned so far; I have been feeling worse than ever in all the right ways, which means it’s working! Also, the Babesia they figured I had back in September (but was hiding behind the Lyme) has started to surface (in the form of horrendous bone pain and chest pain), which is also “exciting,” because we can work on treating that too. Unfortunately, both doctors said they want us here for as long as my Herxes are strong (I wish I knew the timeline for that!) It’s understandable, as it’s the safest thing to do, but boy do I want to come home already! When asked by Dr. Ryser how our Doctor thought we were doing, she said, “Just brilliant. They are a remarkable young couple, and incredibly brave. I can’t say I know of another 26 year old who would have the courage to take on what they have.” God bless her! What a kind and encouraging heart. Finally, everything I need in a doctor and more.
The past two days have been much better; previously, I couldn’t get out of bed; one day—I couldn’t even walk! I have been up and around the house a bit which is a huge improvement, sleeping less, and steadying myself for what’s to come. And with that, I am off to bed. I may not be sleeping 17 hours a day, but I still need more than half of that to keep this body fighting!
Prayers and love for all of you back home.
Kate
"For you will forget your suffering,
recalling it only as waters that have flowed by.
Your life will be brighter than noonday;
its darkness will be like the morning.
You will be confident, because there is hope.
You will look carefully about and lie down in safety.
You will lie down without fear,
and many will seek your favor."
Job 11:16-19
