This is my first blog entry, so I’m not sure how to approach things. Really, I’m just feeling my way through the dark here. Testing the waters. Finding out which style of writing and what content you will all prefer. I also have quite a lot of ideas for blogs, so if things end up getting lumped together, I apologize. I’ve got everything listed on my phone with seven-thousand reminders set because I have the memory of a goldfish. (Actually, that’s a misnomer. Goldfish actually have better memory than me, really.)
So what shall we touch upon first? I guess firstly I should introduce myself.
Hi, I’m Jil! I have a bit more about me in the “about a girl” section, and you can find me on various places on the interwebz if you are curious to know more about me. But basically, I’m a 29 year old Canadian chick, who has been diagnosed with several chronic illnesses (because they like to travel in packs.) These illnesses like to bring along chronic pain with them, because that’s just how they roll. One of them likes to mess with my heart, and make standing and exercise difficult. It also likes to make me faint at inopportune moments. And, one is neurological and likes to make walking difficult on occasion, so now I have a cane that I bring with me. If I don’t need it I can fold it up and put it in my overly-large purse, which is very handy. Some of them like to mess with my cognition and give me brain fog. And one of them likes to kick me in the pelvis occasionally and make me run to the nearest washroom about 2,700 times a day. It’s delightful, but you must have a sense of humour about this stuff, because it will eat you alive if you don’t.
Next, I should probably discuss why it took so long for me to get this show on the road.
Even though I conceived of the idea for this blog in April, it took a bit over a month for even this first post to exist. Why is that? Because illness kicked my butt yet again, of course. You’d think I’d be used to that by now, but of course not! You never know when to expect it to hit you next. That’s the nature of the beast.
On May 3rd I had an appointment at the hospital for another one of the instill treatments I’ve been having since March. During instills, basically they put a catheter into your bladder, drain it, and then put a medication (in this case, heparin) into the bladder and then you hold it for as long as you can. No one really knows why this helps, but the medication calms the irritation in the bladder which calms the pain in the bladder, and also keeps you from needing to run to the bathroom every few minutes or getting up a million times a night to go pee. It works pretty awesome so far. I noticed a difference after the 4th treatment. I was no longer getting up during the night, and I had much more time between bathroom breaks which was FABULOUS let me tell you.
Well, at the end of April we had decided that instead of once a week treatments, we would do them every two weeks to see if I could go that long without them. So the previous one was on April 20th, and I headed in on May 3rd for the first one in two weeks. This was treatment number 6. It was starting to feel some tugs of pain down there, so I guess it was time for a treatment. Treatment seemed normal, nothing was different during the treatment. But while I was on the bus, I was getting some pain in my back and hips to the point I thought I might have to get off the bus for a while.
That night, at about 3am, I was asleep and I woke up and there was quite a bit of pain in my lower back. I’m used to a certainly level of pain daily, and this was a bit higher than normal, so it was surprising. I took some Tylenol and grabbed the heating pad and tried to get back to sleep. Needless to say it was a pretty restless night. The following day, it had intensified for certain. I figured it was my bladder flaring and my treatments definitely needed to be much closer together. So, I decided I would head over to my parents for a few days while I started to feel better, and I would call my nurses at the urology clinic to ask what to do. Well, two urgent calls and a day later, I hadn’t heard from them and I was in a LOT of pain. More than my usual Interstitial Cystitis pain. It was located mainly in my lower back, and it came down through my hips and into my pelvis and lower abdomen. So, Thursday night I went to the ER and waiting around 8 hours or so before seeing the doctor. They were useless as always, of course. As soon as they heard the list of conditions I have been diagnosed with, they closed their ears and sent me home. They did give me a prescription for some Dilaudid however. Which took the edge off.
I gave my urologist a call on my way home from hospital and managed to get an urgent appointment that following Monday. I just had to make it through the weekend. Well, Monday arrived and I saw my Urologist, who is a lovely woman. I adore her, she’s so great. And she gave me a couple medications to try to get through the flare (which is what she believed it to be) and she sent a referral for an ultrasound to make sure it wasn’t my kidneys and a referral to a physiotherapist in the area who does Pelvic Physiotheraphy that focuses on the pelvic floor muscles. But there was going to be a wait for both.
(I also saw my GP doctor that day who increased my Cymbalta to 90mg as 60 wasn’t doing the trick, and she also told me to take 1000mg of Tylenol every 6 hours, 500mg of naproxen every 12 hours, and the dialudid when I needed it)
So I lived through the rest of the week with that regiment of medication as well as immobile on the couch with a heating pad on my back and another on my stomach. That was where I spent every hour of the day. On Wednesday, May 18th, I ended up back in the ER because it spiked to a pain level I had never felt before. I couldn’t sit still, I couldn’t breathe, I was near passing out every time I stood. But, this time, I brought my mother, who could advocate for me. Because it’s incredibly sad that a 29 year old adult woman needs her mother to come with her to doctor’s appointments with her so that they will take her seriously. But, that’s the subject of another blog, really, and I will write about that in due time.
This time, they did some blood work, a urinalysis, and an x-ray of my abdomen and kidneys. Everything seemed normal, but the ER doctor did look back in my chart and saw the MRI of my spine I had in June of 2016. He said I have a bulging disc in the L5 area of my spine. They told me that back when I had the MRI, and told me that it shouldn’t be causing any problems. However, this doctor (and all my research afterwards) indicated that the bulge in my spine can and probably is causing the pain back there. It can certainly spread down into my hips and legs. He said that sometimes people ONLY feel it in their legs. So, he gave me some muscle relaxers called cyclobenzaprine to see if they would help the spasms. He also said that when I see my GP, I should ask to be sent to a spinal specialist in order to figure out if that is what is causing pain and if I need to do anything about it to help the pain.
As well, before I left the hospital, I went over to the urology department and had an instillation treatment to see if it would help as well. I figured even if it was my spine, the bladder was probably flaring from everything going on anyway, so it would be good to treat it.
Well, long story short, the cyclobenzaprine did the friggin’ trick! They called me the following day to come in for an ultrasound just to make sure my kidneys were okay. So, I went in, and after 2 liters of water, they finally were able to see what they needed to see. (I got the results at the end of May, and my kidneys are fine, by the way)
Anyway, the 18th was a Wednesday, by Saturday I was up and walking and nearly pain free. It was a super super nice and sunny day on Saturday, so I went downtown with my best friend Ashley in order to grab some iced tea and enjoy the sun. I managed to do it on just Tylenol and naproxen. 8 hours wandering downtown, and then bussing home to my parents. And on Sunday, I returned home to my apartment. Which is no small feat. My apartment is on the 6th floor of a building without an elevator. That’s a shit-ton of stairs. And that’s the subject of another blog as well. I’ll get to that shortly.
So yeah. That’s what I spent the first 20 days of May doing. Fabulous eh? However, the end of May ended fantastically. Which is also the subject of another blog. Stay tuned for that! Thanks for reading!