Big Update

The update I hoped to give last a week and a half ago didn't happen. Chalk it up to fatigue and a small pity party I threw in my own honor. Guests: me, and possibly my mum who very kindly put up with my miserable attitude and helped me talk through everything I am going through. Now that I am over that, had several days of feeling relatively well, and have once more g returned to the land of utter exhaustion, it is time to update. And I typed exhumation instead of exhaustion... I should change that. As much as I feel like a walking corpse of tiredness, I have not died.

That all sounds very dramatic, but it is how I feel. It is not due to lack of sleep, but rather lack of quality sleep.

On May 9th I saw my surgeon expecting to schedule surgery. That didn't happen. He suggested, instead, that we wait until I finished the course of antibiotics (Doxycycline, 100 mg twice a day) at the end of May and see what happens with the infection. He said we would know pretty soon after that (2-3 weeks) it the infection would rear its ugly head once again. I wasn't happy with this - 16 months of antibiotics and surgery several years before hadn't work, so what use could a few extra week of doxycycline be?

The day after, May 10th, I had more of the tiny sores on my shin (infectious disease says they are sinus tracts). I toughed it out for a few days, but the spots persisted until the next Thursday. After playing phone tag for a while during my clinical placement, I was able to book an appointment with my orthopedic surgeon for May 29 (the earliest day there were appointment available).

Several days before the appointment, I started having a lot more bone pain - deep, achy, unpleasant all around. I stopped the doxycycline on May 27th, as planned. Two days later I was sitting in the fracture clinic waiting for my name to be called. As soon as I mentioned the sores on my shin, my surgeon agreed to do surgery. He said it is a bad sign that they keep popping up even when I am on antibiotics. I signed consent forms so the surgery could be scheduled, and went on my way, both nervous about living without 2 inches of my tibia for 3 months, and relieved to have a solid plan. Uncertainty is the hardest part of all this. Surgery gives me a plan, a feeling of control, to cling to.

The bone pain continue over the weekend and on into the next week. And then the fatigue hit. Horrible, draining, fatigue. It actually started as regular tiredness, and slowly progressed, getting worse over time. The bone pain slowly faded as the fatigue got worse.

Monday June 8th I had enough. I called infectious disease to make an appointment. I got through to her assistant and hoped to hear back. I called again on Wednesday 10th. I got through to the main booking desk, who said there were not available appointments until August 18th. I asked to leave a message with my doctor's assistant. Once I hung up I threw my phone onto the bed and burst into tears. I didn't here anything back that. On the 12th I decided to go back on the doxycycline. Infectious disease told me to start taking it again if anything happened, eg. sores on shin, bone pain, feeling really unwell. The morning of June 10th I called infectious disease again. This was the last week my grandfather was visiting from Holland, so my mum picked my up on Tuesday in the evening. Half way home to St. Catharines I got a call from infectious disease's assistant, asking when I could come in. I told her I was on my way home and since I don't have my G2 yet or insurance I couldn't be back into Hamilton until Friday. This is technically untrue - I have clinical on Thursday's but that lasts from 6:30 am to 6:00pm. We only have clinical once a week, and we already lost one week because our instructor has a previous engagement. Plus, it was already week 7 and finally my turn to give meds and injections. So I said Friday.

Thursday was a long and disastrous day. I knew when I opened my eyes at 4:30 that the day would not go well. I was exhausted... again. It was difficult to stay awake on the bus. Several classmates, who have clinical on a different ward, saw me walking into the hospital. They said I looked like a zombie. I felt like one. At that point I began to feel nauseous. You have to take food with the doxycycline or it causes major stomach upset. Sometimes eating doesn't help though. I sat in locker room for at least 15 minutes before my classmates showed up, trying not to throw up. Fortunately that passed after about an hour. Giving meds went well, and I gave my first ever injection (fragmin into a patient's abdomen). By lunch I was more than exhausted. I was spent. It was hard to keep my thoughts straight and answer questions coherently. My classmates and I went to the cafeteria for lunch, I hoped food would give me some much needed energy, but it didn't. My classmates kept joking that I was drugged up, but it was all fatigue. On the way back to our ward I got really pale and apparently looked like I would keel over at any moment. I called it quiets, and decided to head to the E.R. where my surgeon works at. At that point I probably wasn't in good enough shape to give meds or take care of other people. After taking the two buses to General hospital, I called infectious disease to tell her what was going on. I got her assistant. She said she was trying to book me an appointment and I should have waited for her to call me back as she said she would when we spoke the previous Tuesday. She seemed angry I had said I wasn't available until Friday. I asked what about a follow up - surely my specialist would want to see one of her patients after they ended up in the emergency room, and that the doctors in the er. could not provide the same type of care as she could. the assistant maintained what she said; if I went to the e.r. I would not have an appointment booked. Noe remember, at this point I was barely functioning at all. It was hard to get my own thoughts straight, let alone comprehend what someone else was saying to me. I burst into tears on the sidewalk across from the hospital. I told her to stop yelling at me. She said I wasn't. I replied that she was talking very loud and very fast. It sounded like yelling to me (at least, to me over tired brain). I said I just wanted to feel better, trying to explain the whole 9 year ordeal, and that even if I was ok. the day before, I definitely wasn't at the moment. I have never had someone from a hospital talk to me as if was a disobedient child before. It made me feel horrible for being ill...

I went to the e.r.. The very kind nurse working reception (especially in comparison to my doctor's assistant) was very understanding and sympathetic. In the mean time, I missed a call back from the infectious disease assistant. Her message said that if I could be at the children's hospital by 5 pm, that my doctor would see me. At this point it was 3:30. I decided to chance it, and told the e.r receptionist that I would head over to the other hospital. She said good call, as I would have been waiting there for hours. At this point I called my mum, and she said she would rush over from St. Catharines so she could be there with me.

By the time I got the children's hospital, I was done and out of it. My head hurt, my eyelids were heavy, I was flushed and sweaty, and my leg hurt. Mum made it before my doctor arrived, which was a huge plus.

As usually my infectious disease specialist was amazing. She spent a good 45 minutes with us, listening to all our concerns and questions. She agreed I looked horrible - pale and diaphoretic (sweaty). I explained the fatigue, the night sweats, how horribly I had been sleeping, the bone pain, that we still didn't have a date for surgery. I was able to express overall how bad I felt. She pointed out several things to show that she understood. She said:
1) You have a bone infection - that itself will make you feel ill
2) This is a chronic illness and you have been dealing it for over 9 years. Things build up over time
3) There is an emotional and mental aspect of this to deal with
4) Despite evrything, you are still trying to lead a normal life
She hit every nail on the head. I don't know how to explain how alone you feel over time. Friends don't understand. Family stop taking it seriously. Feeling horrible when your peers build up their lives. Jealousy, sadness, anger, etc. etc. It is reassuring that my doctors understand it.
The doctor decided to keep me on the doxycycline and added cephalexin, 750 mg, 4 times a day. She also gave me a number that would have her paged in case I felt exceptionally horrible and couldn't get through to her. She mentioned a PICC line and IV antibiotics but said we should see how I felt on the oral stuff first.

I went home and slept. For several days I felt shitty. I had a pity party. I was needed. It was well deserved. But it was good to get over it by Monday morning. I continued to feel tired. I didn't realize that I was starting to feel better until I began to feel worse at the end of the week. It was my week off. I pushed myself to get ass much school stuff done as possible. I felt accomplished but exhausted. Thursday evening I called infectious disease's assistant because I felt drastically worse again. Saturday evening, just after 7pm (how amazing is that!?!), infectious disease calls. She said to stay on the antibiotics and she would schedule an appointment for a week or so later. Still no surgery date. She said that my blood work was remarkably normal. "Yay?" I think, but still feeling horrible...

Sunday night I went back to Hamilton, staying here 4 weeks straight, which will leave only 3 week in the semester left. Monday was filled with tiredness. My classmates commented how tired I looked. Tuesday was no better. I made it through class, somehow managed to do some cloth shopping (sweat pants for when I have surgery), and then crashed at home. I was really sweaty and a bit feverish on Monday and Tuesday again. I went to bed last night at 9:30pm, and slept until almost 11am. It was not good sleep. I woke up frequently, had night sweats, and generally felt horrible. I want to stress that this is not waking up a bit groggy or hitting snooze once or twice. This is weeks and weeks (over a month now) of sleeping poorly. Waking up constantly, startled out of deep sleep, night sweats... I have tried sleeping less, sleeping more, sleeping with no blankets, sleeping under a pile of blankets. Nothing helps. When I saw infectious disease last, she said that sleep is effected a lot with chronic illness. I am feeling it. Still have bone pain too, which doesn't help. There is no desire to do anything. My brain feels hollow and empty. the industrious student I was last week is not here right now. This afternoon was horrible. It was hard to think straight, eyes didn't want to stay open, temp. sitting at 37.7-37.8. I felt like I was on fire, face burning. Oh, and stomach upset... almost every day now due to the antibiotics. I called the number infectious disease gave me. Within 3 minutes she had been paged and called me back... on a holiday (Canada day). I am impressed. She switched some of my antibiotics around. I am staying on the Cephalexin but am stopping the doxycyclin and switching it with Septra. I was on both of these originally back in 2011. Feels like deja vu. She said if I don't feel better by around Tuesday next week to call her back and we will probably try IV antibiotics, which means getting a PICC line. Let us all hope that these oral antibiotics work. Positive thoughts. I want to avoid the PICC line until absolutely necessary, which is probably surgery. That being said, I feel horrible. If the oral antibiotics don't work, I am willing to try pretty much anything to feel better.

As a big finale, we have a date for surgery: August 26!
So, I can enjoy my birthday (turning 23 on August 23) doing something fun.
The 26th is a Wednesday, so I assume I will be in the hospital over the weekend. Hopefully not, but that is what I suspect. The surgeon said I could be in the hospital between 1-5 days, depending on pain management. Taking the past into account, and how badly the surgeon said this next surgery will hurt, I assume I will be in a few days.

I am going to bed now. It has taken me severla horus to type this all out. I spent most of the day, since getting up, snoozing on the couch, other than heading the pharmacy to get the script for Spetra filled.
Clinical in the morning, which means getting uo at 4:30am. I don't know if I can make it through the day. Just have to think, this is not a sprint, but a marathon to August 26. Slow, and steady. I can do this. Hopefully without the PICC line.

Here is me, several days ago, when I still looked good. I am now at the point I am so tired that smiling is hard. My eyes look squint, and I look like I am grimacing. Good night. 

Here is me tonight, doing my best to smile...