01/04/12 Today marks our last appointment with our doctor in the United States-- ever. I was very much hoping this day with coincide with my full return to health; but sadly for many, her retirement came sooner than both of us anticipated. Matt found out first, and broke the news to me two weeks ago on our most recent trip down to see our Canadian doctor. He had just returned from working out-of-town, and was set to pack us up to hit the road the very next day. In the whirlwind of his travels, he finally got a moment to share the news with me. I’m not sure if it was the uncertainty to my impending reaction in his voice, or just plain shock at the news, but when he said, “Um, I have something to tell you. Dr. Ryser is retiring….in two weeks,” I had to ask him about six times if what he said was a joke. This couldn’t be true. It just couldn’t. Sure, she was past the age of retirement when we met her; yes, we knew this was one day, a possibility; but so abruptly, and with such little warning, I just didn’t know what to make of it. Inside, I went blank. I didn’t know what to feel, so I didn’t.

Our time down south was very different than usual as well. Health circumstances prevented us from our usual visits with friends; even going for my dressing change lacked the familiar faces I knew from last year. In spite of it all, we were well taken care of in every manner; and our hosts were as hospitable as ever, even if we didn’t get to enjoy as much of their company as usual. Regardless, it was wonderful to see our loved ones’ faces and share what time we could.

My appointment went well.  It was the first time we had a physical consult (vs. telephone appointments) since last September; and, up until the shocking news was dropped on me, I was excited to see how much change our doctor would notice in me. When we arrived, however, all I could think about was what this new change meant for me. Most of all, I wondered what it meant for my recovery, and if a full one was still possible.  

As always, our doctor was a delight. She was so pleased to see and hear of all the changes since we had visited last, and was quick to assure us that even though this news was unexpected, it didn’t have to be scary. She will continue on as my primary physician; and will be able to consult with our American doctor as needed (so long as there aren’t any names given, since she no longer holds a licence). Our doctor here has been working with and “apprenticing under” our doctor in the States for years. She is confident and intelligent, and both doctors believe her to be capable of managing my treatment from here on out.  And while I have never doubted my physicians, it is nerve wracking to suddenly lose one of them; it feels as though my safety net has been pulled out from under this tightrope I’m walking, and all I have left is God.

Some changes to my medications have been made, again; helping my body process and remove toxins in the most effective manner, so that I may have the energy to keep killing these diseases off. That means a reduced med load with one drug, and more vitamins and fluids to flush my system out. We are also in the process of trying to discover if my insomnia is still a symptom of Lyme, or if that has cleared up and it is simply habitual. This involves eliminating my lunchtime dose of Valium, (as it makes me quite tired); and adding in an OCD inhibitor, so that my mind will actually shut off at bedtime-- instead of going into overdrive and keeping me awake at all hours-- even when there is nothing to do. It also has an anti-seizure property to it, so reducing the Valium shouldn’t cause any seizures. I am also to keep my blinds open during the day (and if that isn’t enough, get a SADS lamp that turns on when I wake up) to turn my internal clock around and teach my body how to be awake during the day. I am to be getting up earlier and earlier slowly over time (and going to bed earlier and earlier, as well). The goal is to take my 12 hour wake cycle and switch it to the daytime instead of from 5 pm-5 am. So far I am finding this drug to be somewhat effective. The first few days of taking it I was so inebriated by it I couldn’t think. It was the strangest thing. Within minutes of taking it, I couldn’t focus on what I was reading or anything other than just lying down so I could sleep the feeling of confusion away. Just as with the Valium, my body is now starting to tolerate it, and the effect is lessened. I am able to go to bed earlier, but my brain is not as muddled, and it takes longer to fall asleep.  My hours are improving more than I had hoped in this short amount of time, but I am still encountering one major symptom: brain fog. It only seems to bother me during the day. I am more forgetful, less mentally alert, unable to focus, etc. It is why I actually don't mind keeping such odd hours—I feel like “myself” during these times. I can write; crochet; plan; decide. All things I have difficulty with during the day still. I really hope and pray that if we can get my sleep cycle back to “normal”, my brain will follow suit. It would be a shame to sleep the best part of my mind away.

I had a few questions regarding all of the changes, of course. I wanted to know what this doctor thought of my prognosis now that it was just the two of us. She was just as positive as ever, expressing how much improvement she observed since she saw me last. I was told, “I don’t know what the ‘old’ Kate was like, but the Kate I met; the one who came into my office in sunglasses, curled up into a ball, unable to think and speak for herself—she doesn’t exist anymore. I don’t think you were aware of just how sick you were; or how far you have come. Did you realise you just conducted this entire appointment by yourself? Sure, you consulted your notes at first, but any patient with a long list has to do that!” We spoke of other improvements: my anxiety lessening, for one.  And at the end of it all, she said she still fully expected me to make a complete recovery, emphasising just how well this has gone. I asked for a guesstimate on how much longer my port would be in use, as that the question I get so often (after, ‘how long until you’re better?’) Not being able to say for certain, she estimated I would be doing IV’s for another year or so. Not always antibiotics, however, but accessing it for fluids after we are done with IV meds.

During the course of the appointment I felt less like my usual self with her, and more how I was with my former doctor; challenging, disputing, and overall advocating.  It will take some time to get used to, I think. I wanted to be sure; now that we didn’t have another doctor to bounce ideas off of, I needed to know that this was, in fact, the very best plan. I know that she has my best interests at heart. I am grateful and impressed that she has hired another doctor so she can focus her practise on the patients that need her expertise. I guess it just comes down to change. Change is scary. Changing doctors (or losing one) is scary. Not overwhelmingly so, but enough to make me question what God has in store for me now, and if this was part of His plan all along.

 In the midst of my final phone call today, wherein the doctor rushed to tell me of other available physicians in the States if necessary; of her confidence in the doctor I have here; and the privilege she felt to be our doctor and a part of our lives, she gave us room for one more question.  Matt and I agreed beforehand on what it would be, should we get the opportunity for even one (we knew she had tons of patients to contact in very little time). 

“How will we know if or when it is okay to have another baby?” I asked. “Obviously we can test to see if I am better, but Lyme can go into hiding; and a trauma, like childbirth, has the potential to cause a relapse. How will we know that won’t happen?” 

Her answer was this: we test. If everything shows I am healthy, we can go ahead and decide to have a baby. Nobody ever knows if their child will be healthy; but with the young women she has seen in cases like mine, they have gone on to have healthy pregnancies, babies, and beyond. Because I will be undergoing such extensive testing, I may even have a better chance at preventing other illnesses as well, as the tests taken aren’t part of the routine testing here. And, should there be any question or concern about mother or child after a baby is born, we test again. We know what we are dealing with, and we know how to treat it.  And while this still seems a ways off before we can even consider something like this again, it gives me hope.

Last week, our parish priest came by to visit and give me the sacraments. He asked how I was doing (emotionally), and to be honest, I felt like crying. I was low on hope that day; not knowing what this all meant, or what was in store. 

I just told him that, “Most of the time I am okay. I have gotten to this good place with God where, while I want to get better, I am happy to do His will if it means staying right where I am”.

 “NO!” he exclaimed (much to my surprise). “You must not give up hope. Hope is so important for healing. Trust that God will make you well, and He will.” 

I told him that Matt had rented me a wheelchair so that, for the first time in almost a year, I could attend mass this Easter (providing that I was feeling well). 

As he left, I said, “I hope to see you Sunday!” 

He replied, “No. You WILL see me Sunday!” 

 God has been running this theme of hope in my life for a couple of weeks now. He always knows what I need, even when I don’t.

I attended dinner with my in-laws on Saturday, and it was so great to see Jack and his cousins play, and enjoy hunting around Grandma and Grandpa’s house for chocolate eggs.  Jack has such an eye for detail, he noticed half of the candies before it was even mentioned a hunt was on! Sunday morning I got up in time for breakfast with my boys, and to Jack’s utter delight, prepared to go to church as a family. We parked my wheelchair at the back where there was a few feet of room behind the pews, and a place for Matt to sit. When Jack wasn’t on my lap, he was blissfully dancing to the music (which turned into excitedly running in circles at some point, but hey, I won’t question his interpretative creativity). It was such a joy to see! And if that wasn’t busy enough, I even managed to attend Easter dinner at my parents’ house, though just by the skin of my teeth. In retrospect, it was far too much for one weekend. But sometimes you just don’t know until you try.

I don’t know what the future holds, but I like to see it this way: cleaning my kitchen while I watch my son play outside; taking him to the park, and coming home to make my family dinner. Babysitting my godsons; and being there for family and friends when they are in a bind. Driving again. Going grocery shopping. Attending parties, and hosting events. Going on a second honeymoon with my husband; and experiencing life together-- outside of our home. Attending mass as often as I'd like. Having adventures as a family. Finding out that I am pregnant, and watching my belly, and my family, grow; watching Jack become the world’s greatest big brother. The list goes on and on, really, if I let myself hope. I just need to let myself hope.

Blessings always,

Kate

“The steadfast love of the Lord never ceases,
    his mercies never come to an end;

they are new every morning;
    great is thy faithfulness.
 ‘The Lord is my portion,’ says my soul,
    ‘therefore I will hope in him’”

Lamentations 3:22-24

“Let all that I am wait quietly before God,
    for my hope is in him.

He alone is my rock and my salvation,
    my fortress where I will not be shaken.”

 Psalm 63:5-6