Clinic and feeling crumby

Today has been a slow day. I had to go to clinic this morning (this is something new that I should update about - please give me a sharp nudge if I forget) to get the PICC dressing changed, and to show my proficiency at doing tubing changes, which have to be done every three days. Mom and I passed the test so we got the go ahead to do it at home without a nurse. This is great because it means we only have to go to clinic once a week to get the dressing change done. Today's appointment was pretty early (at least for me) being at 8:50am. The tubing has to be done just before the IV bag is changed every morning, which has to be done before either 1) the IV pump indicates that the bag is empty or 2) 11:00am when the pump starts infusing. Basically, which ever happens first. Because we didn't have the go ahead to do this on our own yet, we had to go to clinic before 10:00am, and just get the PICC dressing done at the same time. But now that we can do the tubing ourselves, we can go to the clinic anytime we like one Tuesdays, even if the tubing happens to need changing that day. For the next five weeks we scheduled an appointment for each Tuesday at 2:00pm.

Compared with the nurse I had last week (my first time at clinic), today's was amazing. From the experiences I have had, the younger nurses are much friendlier and relate-able. The older ones seem to have this matriarchal attitude, and they hate it when people question them or have questions/concerns about anything. But the younger ones I have had have been all around super awesome fantastic.

I have been having terrible headaches and been feeling feint for the last few days. I told today's nurse about this when she asked me how I have been doing. She checked a giant package with all the side effects for all the different IV medications and said I was defiantly having side effects of the Tazocin. She said if they continue or get worse to call the clinic or my infectious disease specialist. Tazocin is not user friendly stuff. There also doesn't seem to be much that can be used in its place, so we are thinking I might just have to tough is out for 5 1/2 more weeks. This sucks. The headaches make it hard to concentrate. The faintness makes it hard to do anything active. And in general I have been to tired to want to do anything. Oh, and don't forget the stomach troubles... but I won't get into those here.

All (and I literally mean all, not most, not many, not some, but all) of the nurses and health care professionals I have meet over the last weeks have been flabbergasted that I am on 12 weeks of IV antibiotics. I suppose there reactions indicate how much of a bitch this infection is to oust. Most people, the nurses tell me, are on IV antibiotics anywhere from 7 days to 6 weeks, but they see very few doing 12 weeks. It gets frustrating hearing this all the time. I don't like to think that I have been sick enough to need all this stuff. I don't like to think about everything that has happened and how uncertain things still are. All that I can really do it be thankfully that I am not one of the people who do this for more than 12 weeks e.g. those on chemo of fighting Lyme disease.

After clinic mum and I drove around a bit. It was a beautiful morning - not cold but with a nice breeze and a weak but slowly growing stronger sun. We drove through on of the nicer cemeteries in the city, enjoying the refreshing smell of freshly cut still wet from the last storm grass. We got home and I promptly fell asleep after getting really excited about what came in the mail (Lego that I ordered last week from Ebay!). Sleep is always a great thing after PICC dressing changes because they always make my arm itch an extraordinary amount. Every week on Tuesday I take a nap and by the time I wake up (3:30pm today... bad, I know, but I am just that tired even after a full nights rest0 the itch is thankfully gone. I had a terrible headache for a couple hours, but now (just after 9:00pm) it has let up somewhat. I think I will try to read a bit before bed, or look at my Latin workbook.

I hope I feel a bit better tomorrow. It would be nice to enjoy the warm weather before it becomes unbearably hot, instead of feeling all crumby. Because of the stuff I am on I burn easily so I can't stay outside long, but I should at least try to sit in a comfy chair under the parasol outside.

Puttering around

I haven't posted in a while. I haven't really felt like interacting with the world. Like an animal, injured by people on the hunt, I have retreated to lick my wounds (not literally of course!). But I can't stay in my house forever. I have to come face the world again. Both the awakening sunshine and the people who stare at me, at my crutches, at my PICC line, at my tubing and IV pump.

My post-op appointment is in the morning, at 11:45am. I would say this is a good thing because I usually get stuck with the dreaded 8:00am appointments, which really sucks when it takes an hour to get to the hospital (Yay! but not so much for waking up at 6:00am when you are ill), but I am up at 8:00 everyday for the home nurse anyways. I know, I know... 8:00am is a very reasonable time to get up, and many people have to crawl out of their cozy beds much earlier than that, but when you have had a bone infection for six years, did nine months of antibiotics, then had yet another surgery, and switched to IV antibiotics, 8:00am shouldn't even be an option on the alarm clock.

I won't lie about it. I have been a bit sad the last few days. I suppose sad isn't actually the right word to describe it. No, I have been realistic. Yesterday was the first day I voiced my concerns to one particular nurse. I am usually quite upbeat when the nurse arrives, but yesterday I really needed a day to vent. To just moop around and let my feelings out. Of course, that wasn't allowed by the nurse. She kept going on how I needed happy thoughts to get better because a lack of optimism decreases the likely hood of getting better. But that's the things. I am not not optimistic. I just see things as they are. I have had an infection for six years. So far my doctors still don't know the type of bacteria causing the infection, which makes it very hard to figure out the best medication with which to treat things. I just don't want to set my expectations to high.

The two weeks since surgery have been mostly agreeable. I went on a nice drive with my mom about a week ago, and than out to Niagara on the Lake for a quick, improvised picnic, e.g. go to the little super market there to buy some drinks, muffins, and a bag of chips, and then go to the park for a small stroll (is it strolling when you are on crutches?) and a scrumptiously simple feast! After tomorrows appointment my mom and I will take the scenic route home, and on Saturday my best friend Beth is coming over for a bit. Next week Thursday I have an appointment with my infectious disease specialist, and Beth is coming with my mom and I so we can go to IKEA together afterward, since it is on the route home. And then on Saturday my opa is arriving from the Netherlands for just over a week.

Physically I have been surviving. The incision site hardly hurt at all compared to the one of the previous surgery. Since I got home from the hospital I have only taken three percocets (really tried to stay away from those as they are so addictive, and they were given out like candy in the hospital) and a few Tylenol extra strengths. But the staples have been pinching like crazy. I will be very happy if they come out tomorrow (fingers crossed). The muscles in my leg are still fairly sore. I can walk on the leg unaided because the bone is strong enough, but the doctor said to stay on them, which is good because if I move a lot (still not a lot) or to quickly the muscles spasm and hurt. Sometimes they just hurt on their own! I have been really really exhausted (thanks a lot antibiotics! - sarcasm), more so than before surgery so that isn't fun. I will bring it up with my surgeon at post-op. The antibiotics make my my mouth taste really sweet, and make my dizzy and drowsy. And as one nurse said, "It is pretty much to get constipated while on Tazocin." I know, tmi, tmi, but my stomach is driving my crazy.

My PICC line thankfully turned out not to be infected. It just really likes to ooze, and since my latest dressing change on Tuesday it has decided to bleed quite a bit. The nurses blame it on using the crutches on the stairs, but it started to bleed right after the dressing change. I think it is just bound to bleed, no matter what. And it is so itchy under the dressing. It would be just my luck to be allergic to the tegaderm!

I am really tired now, so I should get to bed. 8:00am comes to soon... and if I stay up any longer I will be awake when the IV pump goes off for the next dose. It makes more noise at night because there is less fluid in the IV bag because it is the last dose before the bag is changed so the pump has to work harder...its a weird clicking noise that makes it hard to fall asleep. I will try to updates after post-op tomorrow. It will likely be sometime in the late afternoon/early evening as the wait times can be pretty long and I have some errands to run (haha the irony) once back from the hospital. I also have some other stuff I want to post about, so hopefully I will get to that in the next few days.