This week’s bite-size goals (21-27 January 2018)

It’s technically Monday here now but since I haven’t been to bed for Sunday night, I still count it as Sunday. 😛

  1. Write a blog post that isn’t goals or goal reviews!
  2. Work on a jigsaw. There are too many on the go at the moment and I’m getting rid of the desk they’re on in preparation for the cat.
  3. Do any arts (drawing, painting) or crafts (crochet, embroidery).
  4. Sort out the last of my books from my sister’s room.
  5. Take photos! I find I take virtually no photos any more which is sad. When I lived in another city during my undergrad in 2008-2012 I took pictures all the time. Now I don’t get out much to take any nature pics etc., but it’s always good to take good pictures with family for albums.

Goal review (14-20 January)

Honestly, I’m not having a great time with depression in particular so I haven’t been very active this week again.

  1. Repeat from last week: contact the cat shelter to start the process of adopting our cat. I didn’t contact the shelter yet but we made progress getting my room in a state for the kitty to come live.
  2. Work on organising the music files on my laptop. I did a tiny bit of this.
  3. Organise papers. I organised a lot of stuff actually! My sister did the physical work so we got through a lot. Now I just need to find spaces for things.
  4. Work on any translation. I did some Russian.
  5. Cut down the amount of clothes I have. We went through my shirts (again, my sister did the physical work!) and threw out a lot. I’d quite like to get my shirts down to one drawer and so I’ll see which ones I tend to wear and which ones not.

This week’s bite-size goals (14-20 January 2018)

  1. Repeat from last week: contact the cat shelter to start the process of adopting our cat.
  2. Work on organising the music files on my laptop.
  3. Organise papers. My sister brought boxes of my old stuff and papers including from my undergrad degree (which I completed 6 years ago now, whoops). Again it’s a case of finding a good system to papers I need to store, access without too much trouble if needed, access every day etc. Right now they’re all kind of jumbled together.
  4. Work on any translation.
  5. Cut down the amount of clothes I have. I don’t need so many and I need the space for other things!

Goal review (7-13 January 2018)

Things have been particularly bad health-wise just now so I got virtually nothing done this week, unfortunately! Of the goals, I only managed to organise something, by which I mean I neatened up my main meds drawer, haha. My family are pitching in to help me get going with sorting out my space and so the sooner we can get the cat. I have higher hopes for next week, but the joy of doing this is that I don’t keep count of goals I passed or failed, or streaks, or any of that. This week is over, and onto the next!

My IC/cystostomy saga continues

The last thing I posted about my bladder issues here was in November 2015 (https://lifeofalupie.wordpress.com/2016/02/18/lupus-cystitis-confirmed-nov-2015/) when we confirmed interstitial cystitis and I had the emergency catheterisation at my urology appointment because, surprise, surprise, I couldn’t pee! I said the urology department was going to teach me to self-catheterise when I couldn’t urinate to avoid the pressure on my kidneys. I’m going quite far back in my memory now but I’ll see what I remember (and find my tweets from that period!).

The first appointment about intermittent self-catheterisation was in December 2015. The amazing urology nurse–who has been my absolute rock throughout this whole thing, I tell you!–gave me a bag of catheters for my Christmas present, lol. She got the catheter in much more easily than at the cystoscopy appointment because the emergency catheter and scope had stretched my urethra quite a bit. Still painful though. I managed successfully myself at home the first time but soon I was spending as long as an hour struggling and left bleeding, still only getting it in rarely. Around the start of 2016, I had another urology appointment and I was to keep practising with the intermittent catheters. Indwelling catheters were mentioned but as I didn’t need the intermittent catheters every single time I needed to urinate, it was more of a last resort thing. I had a renal scan to double check my kidneys weren’t damaged due to the pressure from backflowing urine (kidneys are at risk with lupus anyway) but they looked quite good, thankfully.

In November 2016, I still had no more success with the intermittent catheters, but my urologist and I agreed I wasn’t quite at the stage for a suprapubic catheter/cystostomy, especially because the surgery would be particularly complicated for me. I was in limbo for quite a while with my issues, where it just seemed like I had to live with it, and perversely “hope” it got worse to the point where a cystostomy would be indicated.

In August 2017, I was put on the list for the suprapubic catheter. Despite the extra complications, the urologist and I agreed that it’s my only option now. So I basically just had to keep going as I was until then.

Or not! In October 2017, my bladder decided to fail a week or so before the pre-op assessment for the cystostomy surgery. I went to the hospital in the middle of the night before things got really bad as I remembered the horrendous pain from last time and didn’t want to repeat it! There was about 600 mL of urine on this occasion, which is still pretty significant–normal bladder capacity is usually quoted around 300-500 mL–but I’m glad I hadn’t waited until it got worse. For comparison, I saw one quote that the “OMG I must find a bathroom NOW” point is about 400 mL.

As usual, it was a lot of trouble for the docs to get the emergency catheter in, but we got there in the end and I was sent home. Apparently I would see my urology team in a week or so and get the catheter out, but it was decided that it was too risky that I would need emergency surgery if we took the catheter out and then my bladder retained again. I’m not going to lie–the first week or two with a urethral catheter was horrendous, but most of that was probably the UTI I got pretty quickly! I was having constant agonising bladder spasms which in turn were causing urine to leak around the catheter (called “bypassing”). The constant leakage was burning my skin. I practically sobbed down the phone to the district nurse for her to come to my house and take it out. I didn’t leave the house until I had the pre-op assessment for the cystostomy anyway, but of course that was just the usual pre-op questions and tests.

While I’d been at the hospital that day though, I popped into the day surgery unit hoping my urology nurse would be there. She was and she saw me despite me not having an appointment. She is an absolute life saver. She changed my leg bag to a valve, which was much easier for me to deal with. (Also I had my Masters graduation the next week and I’d been very paranoid about graduating with a bag of urine strapped to my leg! As I use a wheelchair, as the bag got full, it would be visible hanging out below my trousers.) The valve has various benefits over a leg bag, such as allowing the bladder to keep its tone as it fills until you empty with the valve rather than constant drainage into the leg bag. This can decrease infections as you’re flushing out the sediment from the bladder as well. I had basically been discharged from the emergency department the night it happened without any info, but the urology nurse got me all sorted with all the equipment I needed, with plenty of valves, spare leg bags, night bags as well as a night stand. She also told me she’d write to my consultant so I could get the cystostomy surgery before the urethral catheter would need changed in 3 months, as it is such a difficult and painful procedure for me.

Alas, this is where I am now. The catheter is due to be changed in a week or two and I haven’t heard anything so I will chase it up with my doctor. I don’t have a date for the surgery yet so it’s extremely unlikely it’ll happen before I need the urethral catheter changed! I am coping much better with the urethral catheter though. Although it does get difficult every now and then, if I was to have this forever, I wouldn’t mind too much. One major benefit of the suprapubic catheter though is fewer infections! I’m currently taking anti-cholinergic tablets for the spasms and they do help although it’s miserable combined with the Sjögren’s as the pills exacerbate it! I’ve had lots of the problems: leakages, forgetting to close the valve (of all days, I did this the first time at my graduation! Felt wetness on my trousers and just though Uh oh!!!!), spillages when changing the valve, spillages when emptying the night bags… I still have blood clots and blood in the urine quite a bit now.

I will detail the surgery here when it happens; you can all go through the journey with me. 🙂 I have watched many videos of others with all sorts of conditions who have a suprapubic catheter and I feel like I have a good idea what to expect although you can never be completely sure until it happens!

Honestly, I never thought that the lupus would affect my bladder this much and that I’d have a suprapubic catheter ever never mind within about five years of the onset of my bladder issues. Sometimes with this disease it can feel like “Oh, God, what body part is going to stop working next?” But we just have to do what we can with it and deal with things if and when they come.

This week’s bite-size goals (7-13 January 2018)

  1. Contact the Cats Protection shelter about our needs for a cat and hopefully arrange a home visit. I’ve been hoping for a pet cat for a long time and for my 27th birthday (31st December) my mum finally agreed!
  2. Make a list of the exercises my physio has given me. Because I have quite a few and he wants me to do several sets a day, I’d be doing nothing else but physio even were I physically able, lol! But I have neglected it for a while and want to work up completing at least a set of each a week for now.
  3. Work on my book spreadsheet.
  4. Organise *something* in my room, whether it’s sorting a drawer of papers or finding a place for something.
  5. Watch a movie.

New blog name/look! + Catch-up

As part of my resolutions for 2018, I intend to actually use this blog! I hope to use it as a kind of journal as well, and not pressure myself that every post has to be a big, important one with a take-away message. I tweet a lot of very long, rambling threads on Twitter, some of which are probably better done here, haha. I want to change the name because even though most of my posts will probably be about health and disability, my conditions are more than just lupus! I’m currently stuck on a new name, but hopefully I will come up with something I like soon.

For a quick catch-up with where I’m at (I’ll write more in depth posts on most of these):

  • I graduated in November with my MSc in Biomedical science.
  • My bladder decided to completely pack in, so I’ve had a urethral catheter in since October. I’m still waiting for a date for a suprapubic cystostomy.
  • I am finally getting a pet cat!
  • This year I’m going to start my Weekly Mini Goals on here again, as a small incentive to get things done.
  • In general I’m trying to be more consistent with my (too many) hobbies. I’ve kept up with my languages and translation, maybe not as much as I’d like, mind you, but crochet, writing, music, drawing, painting, have all been neglected for so long. I’m also starting embroidery.

Those are the big things, anyway!

EDIT: And now I’m off to actually update the other pages on this blog, which are wildly out of date!