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!

Yoga and vegetables – NOT a cure-all for chronic disease

In the wake of Bernie Sanders’ suggestions that chronic illness patients simply replace their use of opiates with yoga, my ongoing frustrations with non-disabled people’s ignorance of disability and medication in particular is running rampant. I and most other disabled people I know are frankly tired of being shamed for the medications we take, for our quality of life, often to actually keep us alive, because non-disabled people have decided that they now know everything there is to know about pharmacology (and let’s be honest, it’s often based on fearmongering posts full of ignorant rubbish spread on sites like Facebook. Or at least in my experience.)

Believe me, disabled people have probably heard all your suggestions for an “alternative to medication” before. I’ve been told it’s my meds poisoning me, to do yoga, to find Jesus… So I guess a first point to make is stop believing that you are the first person to give us this “amazing” life advice to eat more vegetables and do yoga to cure our diseases! (We *have* tried going unmedicated before, you know.) You probably mean well, but do you know how much it bores a person down to deal with uninvited advice on “cures” that 1. don’t work, 2. we have heard a million times before?

Aside from the ridiculousness of suggesting that yoga could possibly take the place of opiates and be just as effective, people seem to forget that some of us can’t actually do yoga, whether simply physically unable or because yoga and such exercise exacerbates our conditions. If you’re thinking “well, exercise usually hurts at first, but the more you push through, the fitter you’ll get and the easier it will become”, you’re probably able-bodied and assuming that disabled bodies react the same way as yours. Here’s a clue: they don’t, always. I have internalized a lot of ableism based on the “lazy scrounger” rhetoric, and often think “Are you really doing as much you can physically?” One day of pushing myself, even with a motorized wheelchair, can put me in bed in agony for days to come. I know my own body and I know its limits. I have spent years trying to keep up with able-bodied paces and limiting my medication as much as possible. All that does is decrease my quality of life, exacerbate my mental illness, and restrict my life. So forgive me if I want to do whatever I can to avoid that scenario.

The pharmaceutical industry has its problems. You’d be a fool to believe otherwise, in my opinion, but that is hardly a basis for denouncing every single aspect of medicine. There is also this widespread belief that doctors keep patients medicated in order to profit from them as returning patients. Well, there is actually a shortage of specialists to the number of patients who need them, so doctors aren’t going to run out of patients any time soon.

Yoga can help many people, but if you think that’s a universal cure-all for any disease and that we can give up our medications in favor of it, then I’ll be frank: you are wrong. If it helps you or someone you know, great! But I beg you, stop shaming those of us who it doesn’t help. We’re not just being stubborn: we have tried these things. Just because we have a pride in our disability doesn’t mean we don’t do everything we can to increase our quality of life. It’s not a coincidence that people with my main disease lupus now survive much longer with drugs like immunosuppressants than we used to, when the life expectancy was closer to 40 and the rate of serious complications was much higher. In the 50s, people could expect to live about 5 years following diagnosis. This is my 11th year with this disease, and although mine continues to progress, my medication has slowed down that progression much more than it would have been otherwise.

This unorganized post basically comes down to this: disabled people know their bodies’ limits and limitations. You don’t. Most of us have found that without medications and aids, our quality of life is just too low. Many of us also find that one of the hardest issues to live with day-by-day when you’re disabled is the ignorance and ableism of other people. We are tired of unsolicited advice from people who barely know us or our conditions. Supporting us does not involve shaming us for the things that we do to have the best quality of life we can. Many people successfully incorporate more natural remedies with their medications or even manage to come off their medications altogether; this is great, but by far this is not even a choice for most of us. If you want to truly learn about disability and disabled lives, listen to disabled people, not non-disabled people spreading inaccurate and accusatory rubbish on sites like Facebook, where you read things like how “miraculous” it is when a wheelchair user stands up, or even walks (i.e. they’re faking), when the reality is that most wheelchair users are not paralyzed and *can* stand or even walk for a time.

Honestly, the “bitter crip” stereotype is a thing precisely because non-disabled people have decided they know more about our lives and needs than we do. To support us, listen to us. Nothing about us without us.

Lupus cystitis confirmed (~Nov 2015)

(Whoops! I accidentally posted this as a “Page” in about November, haha, so here it is as a “Post”! I’m well overdue a general update as well, so I hope I get round to it soon. Probably my “symptoms” and “medication” pages need updated too, so I hope to do it after my upcoming deadline for uni is over with.)

————-

I need to get better again at writing here. (I feel like a broken record saying that now!) Anyway last week I had my cystoscopy, and, surprising no one, lupus cystitis (interstitial cystitis) was confirmed. I’ve had quite bad luck all week last week (including getting stuck in a lift at uni when someone knocked against my wheelchair and the power wouldn’t switch on!) and so can’t say I was too surprised when the appointment had a lot of complications!

As I’ve mentioned before, my symptoms were mainly high pressure and pain in the bladder, but not being able to pee easily even then. Often it seems I can feel the urine inching along slowly before minutes later coming out. Often it comes in spurts and dribbles, or if the stream is strong, it will abruptly cut out and start again numerous times. It’s very difficult to sleep when your bladder feels full and painful and you can’t pee!

In the last post, I mentioned the problems I had at the last appointment doing the flow test and so I kind of expected similar issues. I got there and couldn’t go for the flow test, so as usual they gave me jugs of water to drink. I went to try a few times, staying in the toilet for a good 10-15 minutes each time to no avail, so came out again to be faced with more water. So far, so usual for me!

However, I think I had about a liter of water and still no result. The pressure in my bladder got high and I became very uncomfortable. A short while later, unfortunately it backed up and my kidneys were in agony as well as my bladder, I broke a massive sweat, was swearing, praying, and was nearly crying, tbh! The nurse asked the consultant how to proceed, and did the ultrasound anyway to check if my bladder was actually full. I can tell you it’s very uncomfortable having an ultrasound probe press down when you have half a liter in your very painful bladder!

Unfortunately it got to the point where there was no other option but catheterization. You’d think it wouldn’t be so hard just to go to the hospital and pee in a special toilet without much ado, but I guess the point I was there is because of bladder issues! They took me round to the recovery word and the nurse was amazing, even though she had a lot of trouble getting the catheter in and had to get a second nurse in to help–apparently the anatomy of my urethra isn’t that straight forward! (I had a similar issue when getting my ears syringed–the shape and path of my ear canals is an anatomical variant so the nurse had trouble getting to my eardrum!) The catheterization was painful at times, but by this time my bladder and kidneys felt like they were about to rupture so I didn’t really care about much else but the relief!

They finally managed to drain most of the urine–they couldn’t get it all because of the position I was lying in, and then after a rest I finally got to see my consultant! He was very reassuring as usual–he’s always very sweet to me. He too had trouble getting the cystoscope in, but thankfully he didn’t find anything overtly abnormal like stones, massive shrinkage, tumours. Unsurprisingly, the damage is from the lupus. They’re going to teach me how to self-catheterize to avoid the build up on my kidneys, which will damage them more. (Thankfully, the damage from lupus on my kidneys is minimal at this stage, with some proteinuria.) My blood glucose has also not been great, so he told me to keep on the lookout for symptoms of early diabetes, whose risk is increased by lupus anyway. I’ve had a lot of incidents with symptoms of hypoglycemia so I will be vigilant.

Urology appointment

I’ve had bladder issues for a while now. I’m notoriously bad at keeping track of time in any context, but I know a few months ago, it had been at least a year as I had mentioned it to my rheumatologist. It seemed to be just another symptom I had to deal with. Things worsened over the year, and so recently I got a referral to urology to get to the bottom of the issues. My doctor was concerned that I was having such a tough time so young, as he would expect symptoms of this severity in someone much older. (Then again, that happens quite a bit with diseases like lupus, doesn’t it? Haha.)

Mainly my issue is feeling the urge to urinate a lot, but then when I actually get to a toilet, nothing comes. Sometimes I am there for an awful long time trying to go as my bladder feels very uncomfortably full or sore, but it’s often just a little dribble every few minutes, or nothing at all, or I finally manage to go after feeling like I can feel the urine inching along very slowly along the urinary tract. Often, when it does come, it’s in spurts rather than a steady stream. When it flares up to its most intense, I can void fairly small amounts many times an hour, probably six or seven, so not as severe as I know some people with bladder issues have it, but very frustrating as I am dealing with the discomfort and pain of a full bladder all the time and can’t relieve it. Some TMI perhaps: I keep a bucket upstairs during the night for times when I’m going so frequently; it’s not easy for me to go up and down the stairs anyway, never mind so often. It’s very hard trying to get to sleep as well when you feel you need to pee so desperately. I’ve had many urine tests but they all come back clear.

I finally visited the urologist yesterday. I had been afraid that when I went, things wouldn’t be too bad (as can often happen when you have appointments for symptoms with a disease that can vary a lot from day to day), but actually, it was even more ridiculous than usual! I was to do a flow test before seeing the urologist, which should be a “simple” thing of peeing in a special toilet that can be moved up or down as you need it, and you can use a commode-style seat over it if you need. I spent about ten minutes in there the first time, before telling the nurse it just wasn’t happening, although I’d been happy on the way up because I felt like I needed to go (and hadn’t been since the morning). She gave me some water to drink as it’s not too rare an occurrence that someone can’t go. I had literally eight plastic cups of water, spent about another 15-20 minutes across two more trips in the toilet, and still nothing. I was meant to have an ultrasound after the flow test to see if any urine had been retained.

The nurse was great, and she asked the urologist if he’d see me now without the flow test results. He did, and did an ultrasound anyway, which was pretty uncomfortable pressing down on a very full and tender bladder! That and my intake/output chart didn’t bring up anything particularly abnormal. He explained to me a few things he suspects might be the case, such as bladder stones. I guess he thought it was reassuring when he mentioned cancer to say that he thought it unlikely as I’m young and have never smoked, but to be honest, it hadn’t even crossed my mind so it was a bit unnerving to have him mention it in the list of possibilities so casually. (A colleague of mine was recently diagnosed with cancer when no one was expecting it to be the result of the investigations, so it’s quite fresh in my mind!) However, both I and the urologist are pretty convinced it’s interstitial cystitis. As it’s an inflammatory condition, it is comorbid with various other autoimmune diseases, including lupus, of course, as well as some secondary conditions I have, such as Sjögren’s syndrome and IBS. It fits my symptoms and seems the most likely culprit.

The urologist doesn’t want to start me on any medications for my bladder yet until I have a cystoscopy to see what’s going on. When I go to the hospital for that, I will have the flow test repeated and finally have the ultrasound to check for urine retention. I’m hoping we get some answers from the cystoscopy, which I’m sure I’ll blog about at the time. The urologist was fantastic and very reassuring, including patting my hand, haha! Happily, I will get to see the screen as the cystoscopy is done, which is perfect for an anatomist, right? 🙂

Anyway, currently I’m off to try to pee, haha!