September 17th 2016: Happy thoughts (reposted from facebook)

So… I have ALS and a lot of things suck a lot of the time. But not all the time!
Things that make me happy:
* Spending time with my parents. This can be a little difficult because we spend A LOT of time together these days… But they are awesome and so funny and I really enjoy that.
* My guinea pigs, Flauschi and Anton (the new guy). Sometimes I think they do it on purpose, like “I am just going to hang out here where Anja can see me and be extra-cute.”
* Sleep. I still sleep really well, like several hours in a row, and it is amazing. And I actually look forward to going to sleep now.
* Getting whatsapp messages from Jo. Thank you!
* Random good music on the radio. Highlight of today: the Faith No More version of Easy
* Reading about my friends” endeavours, baby bumps, kids… on facebook
* Walking. I walk with support from my dad and every now and again I manage to place my pelvis just so and actually stand on my legs with very little need for support and it feels wonderful.
* Visits from friends. I often worry about being too exhausted and no fun and it all being too emotional but… that is really silly, visits from friends make me happy, so… here I am begging for more visitors!

And on September 18th I added:
And… one more thing that makes me happy: 51kg! Finally. I had been stuck at 49.5 for weeks. Many many weeks. And today, all of a sudden, 51kg. I want to gain a little more but I am really happy for now because weighing less than 50kg is just absurd. Yay!

August 25th 2016: Some days it is just too much. Like today. (reposted from Facebook)

When I recently mentioned “feeling weak and nauseous”, that was a bit of an understatement… I have had almost daily diarrhea for a few weeks now, and since last week the occasional stomachache and nausea on top of it. Two stool samples came back normal and my bloodwork was excellent, from an internal medicine point of view I am perfectly healthy. Technically this is good news but… not very helpful at the moment. I am literally sick of this shit.
And since my amazing night with 7 (seven!) hours of sleep, I have had a bunch of shitty nights. I sleep mostly in my beloved comfy recliner and lately my heels have been getting sore. We put extra padding on the foot-rest and that worked for a while but not anymore. So now we have to experiment with all kinds of extra padding and supporting my body here and there to take weight off of the heels… and it depresses me. It further limits my ability to move and get comfortable. And… I just want to sleep!
And on days like this, the two things that make me sad, make me really sad: my poor shoulders which are skin and bones (Honor your rotator cuff and deltoid! And if you could do a few arm exercises or handstands for me, that would be great.) and my poor tongue.
It has been almost 5 years and I think I have been a good sport… Can I please not have ALS anymore?

August 22nd 2016: Sleep! (reposted from Facebook)

2 nights ago I slept 7 hours uninterrupted. Seven! SEVEN! And then I woke up, had to pee and slept 2 more hours. But the point is 7 hours of uninterrupted sleep! My mom literally wrote it in the calendar because none of us can remember the last time I slept that well. It has been at least 2 years. Last night I slept 3 hours, 2 hours, 3 hours, which thankfully has been about average for a few weeks now. After the spectacular night before, last night was a little disappointing but I soon remembered that I used to wake up much more often. So, it is all good. 7 hours!

April 15th 2016: A decision and a compromise (reposted from Facebook)

At the beginning of the year I did some thinking. You know, new year… 40th birthday… and I decided I will not grow old with this disease. That’s definitely an option: with invasive support, meaning a feeding tube and a tracheotomy I could theoretically live with this another 30 to 40 years. Some ALS patients make that choice and if it works for them, that’s great. But I don’t want to live like that. So no invasive stuff for me. This means of course that I will die sooner rather than later (unless I get my miracle…). Not next week but it’s probably safer to think in terms of months rather than years. And I’m ok with that. Don’t get me wrong, I’m really pissed of about having ALS at all. But I have it and it is what it is and I’m ok with the choice I made.
However… I’m not ready to go just yet, and I’d rather have many, many months, and I don’t want to make things unnecessarily difficult for myself and those around me, so I got a port yesterday. That’s also kind of invasive but I’m ok with messing with my veins. I wanted one for three reasons:
1. I’ve been getting IVs for support, mostly vitamin C, glutathione and homeopathic stuff. And my body really wants and needs that but my veins are not having it any more.
2. I can easily be given fluids.
3. I can even be given calories to support me gaining weight again.
So this port should make my life a lot easier. It was a small surgery procedure with a local anaesthetic, unpleasant but ok. The spot is a little sore now but thankfully I have my yummy raspberry-flavored children’s ibuprofen syrup. And later today I’m getting my first high calorie IV. Wish me luck!

April 9th, 2016: Time for an update. Some good news, more bad news. (reposted from Facebook)

Nausea, diarrhea and weight loss in February. My doctor took a stool sample and the result was fantastic: an explanation for my problems (my healthy gut bacteria were severely out of balance) and an easy treatment (take a combination of certain probiotics). I felt better almost instantly and started gaining weight. That was at the beginning of March.

But then… my dad got a cold. And then my mom. And then I did. And then one of my favorite nurses… broke her arm. I’m not making this up.
My cold was horrible. I had to take antibiotics… So long, healthy gut bacteria. And hello again, nausea and diarrhea, can’t say I’ve missed you. As an added bonus, I was unable to take antibiotic pills, so I had to take a children’s syrup with a lovely fake chewing gum flavor.
And I had a cough. And codeine cough drops. But here’s the thing: my lungs are holding up pretty well (I had another check up with the Professor in February and he was quite pleased again) but my breathing is compromised, so I was only allowed to take very little codeine. Five drops which gave me relief for about two hours three times a day. Not much. The rest of the time I would lie on my right side, the only position where I didn’t have to cough. But that of course got uncomfortable, partly because I’m so bony! So I would lie on my right side as long as I could until the pain especially in my shoulder got so bad that I would rather face a fit of coughing and trouble breathing. Then I would get up, get the coughing over with, sit for a little while and lie back down again. Thankfully this only lasted about three days. And nights.
But the worst part was this: you know when you’re so sick and feel so rotten that the only consolation is to think this too shall pass and soon I will be healthy again? Well, I don’t really have that. I have life as an ALS patient to look forward to, almost completely paralyzed, trouble speaking, trouble swallowing… And I still feel that: I’m over the cold, fixing my intestinal tract again, my weight is 43kg, and I’m so exhausted and wondering what’s the point. I will of course do my best as always to dig myself out of that hole again, especially get my weight back but… I’m not feeling it.
My biggest concern right now is my neck. And my upper back. The muscles have gotten so weak that I just can’t hold my head high anymore. Most of the time I literally don’t know where my head is supposed to be, except for a few glorious moments at the end of physical therapy. Or when my osteopath sets my head straight. But most of the time my head has to be supported, either by leaning back on something or with a neck brace. And it’s really shitty, I get dizzy and headachy and my neck feels tense. And it’s interfering with my exercise program: I used to go walking every day, with support and only about 100 meters but it was so good for my legs and really helped control the spasticity. But now I can’t do it anymore because my neck gets sore. And the neck brace doesn’t help much because then my upper back collapses. I have a back brace too but by the time I’m strapped into all those braces I’m exhausted and have to take a break, meaning the whole process to walk 100 meters altogether would take about one hour, followed by a one hour nap, and I don’t have that kind of time.
Thankfully my voice has recovered a little. Speaking has been difficult for over a year, meaning speaking clearly and understandably and forming words. But the shocking thing that happened at the beginning of the year was that my voice started breaking up and becoming hoarse. A friendly reminder that ALS eventually takes away one’s ability to make sounds at all. But like I said, for the moment at least my voice has recovered. And that’s the positive end of this post.

November 22nd, 2015: The tooth, part 2 (reposted from Facebook)

I can’t believe how easy breezy this tooth-pulling-business was! Not like pulling teeth at all.

Here’s why:
My fishing for reassurance on Facebook really worked. Thank you to everyone who commented! It put me in a mood of “I’m doing the right thing. It’s gonna be ok. Let the tooth go.” And I meditated on that – a lot.
And the tooth had a partial crown but no root canal, and it was dead. It had died all by itself. So my doctor pointed out that technically the tooth had left me. I was the dumpee!
My doctor also gave me some great advice which I want to share with you all, in case you ever have to have a tooth pulled: take ibuprofen BEFORE! I took 600mg about an hour before my appointment and then again about five hours later. My doctor explained to me that by taking ibuprofen before one can avoid inflammation and swelling altogether. And what can I say… It worked!
And last but not least: the oral surgeon did a stellar job! He had to separate the tooth into four parts because the roots were sticking out at weird angles. And he did and pulled the four pieces out and cleaned out the inflammation underneath and then used some sort of glue instead of stitches. And the whole thing took less than 30 minutes! Amazing!
And afterwards: very little swelling, very little pain. But I took ibuprofen anyway, you never know…
And I really needed this, I needed something to go better than expected. Super-grateful!

November 20th, 2015: The tooth, part 1 (reposted from Facebook)

Today at 5.30pm I’m getting my tooth pulled. And now I’m worried that you might think that I’m giving up on a tooth too quickly and easily. Or maybe I just want to reassure myself by running this by you all. So here are my thoughts:
I mentioned that one shouldn’t leave a dead tooth in the mouth of an ALS patient. Before someone else says it, I’ll say it myself, there is no ” scientific evidence” for this, meaning no clinical trials have been done on this. Which does not surprise me, because relatively few people are affected by this and a clinical trial like that would be very complicated and expensive (treating everybody’s teeth as opposed to just giving people pills). But… “Absence of evidence is not evidence of absence” (Mark Hyman, M.D.), and the clinical experience of both my dentist and my general practitioner says that a dead tooth in my mouth is not a good idea and that’s enough for me.
Plus, I used to believe in doing everything to keep one’s teeth but… I’m not so sure about that anymore after realizing that after a root canal the tooth is dead anyway. And… I have ALS and nobody knows how much longer I will be able to eat at all. So now is not the time to hold on to my teeth for dear life. Of course I try to be positive but I’m not making too many plans for the future. And right now appointments take a lot out of me and a root canal would take at least two appointments if everything goes well (with my teeth it hardly ever does) and pulling the tooth only takes one appointment.
So, it’s all very clear and I’m doing the right thing. Right? And yet… I find it emotionally difficult to let go.

November 15th, 2015: Good news. And bad news. (reposted from Facebook)

Starting with the good news: last Tuesday I had another lung check up with the Professor. My lung volume has decreased a little but my body is compensating well and the Professor was quite happy.
So Tuesday was a good day until in the evening… I got a toothache. It appears to be one of those times when I can’t get a break. After a horrible night I went to the dentist and… I have to have a tooth pulled. It’s the second to last tooth on the upper right hand side and it has an old crown which for some reason wasn’t treated two years ago when I had my “big mouth renovation”. And now there’s an inflammation and it hurts and it could theoretically be treated with a root canal but then the tooth would be dead and one shouldn’t leave a dead tooth in the mouth of an ALS patient. Plus, I wouldn’t really prefer a root canal. Pull the sucker!

November 9th, 2015: Update. No digestive details (I promise) and no ranting. (reposted from Facebook)

What can I say… it’s been incredibly difficult. The disease has progressed further and at this point my arms and hands are almost completely paralyzed. So l need help with literally everything. My legs are a little better, I can stand and walk a little with lots of support. But the worst part is that the disease is very much messing with my ability to speak. This was really bad about 3 months ago causing fear and panic attacks with spasticity, so I couldn’t sleep and I was so exhausted that speaking became even harder causing more fear… Thankfully, with the help of anti-anxiety-medication I was able to snap out of it and my speaking improved some. But it’s still very difficult and I’m looking into computer communication programs to help me should I lose my ability to speak completely. (I’m also sometimes wondering what my last spoken word should be…)
So things calmed down a little and then my digestive troubles started. Since there was nothing physically wrong with my belly, that was most likely related to stress and anxiety. I was so scared. I could see no way to not be stressed and anxious while having ALS and losing weight again. Plus, around that time we applied for 24 hour care, meaning my medical insurance pays for it and we can hire a 24 hour nursing service. And that stupidly upset me. Stupidly because in reality I’ve been needing 24 hour care for months but because my parents were providing the care, it didn’t feel so bad. But the thought of needing a 24 hour nursing service… well, fear and panic attacks. And the new nursing service who should have provided my care was a huge disappointment. To say the least, it was unbelievable what those people did to me in terms of making promises they couldn’t keep, their organization was total chaos and that situation dragged on for days… causing fear and panic attacks. So, that nursing service is gone and I’m still looking and in the meantime my old nursing service are doing their best to help out. And somehow I, or rather my intestinal tract managed to relax and my digestion is much better and I’m sleeping better as well. No more fear and panic attacks, at least for the moment.
But the absolutely worst thing right now is my lack of time. I’m so tired and I have appointments every day and things like eating take so long that I literally have no time for anything. There are 3 blog posts stuck in my head and I have no time to get them out. And I don’t know when to hang out or just communicate with friends – and I miss you all so very much!

Still here… and catching up

A little over a year ago I suddenly found it too hard to write my blog. I did however write some lengthy facebook that really could have (maybe should have) been blog posts. And it just occurred to me that there may be people who are not connected to me on facebook, who read my blog… So I am going to copy and paste this past year’s facebook posts to catch you up and then I want to write again, now using my “eye thingy”, my computer eye operating system.

October 27th, 2015:
I’ve had it with this ALS+ bullshit! I.e. having ALS + some other nasty thing. Like digestive issues. Want details? If not, skip the next sentence. I’m ridiculously bloated, farting up a storm, and have occasional explosive diarrhea. Fun. And this has been going on for weeks. My blood work and stool samples were fine (something else I’ve had it with: oh-so-good test results when I’m not feeling oh-so-good). So I went to the hospital last Friday for an ultrasound. But the doctor couldn’t see anything because there was so much air in my belly. So he said: “Well, at some point ALS affects the internal organs.” Which is not true, so don’t worry. I guess he was just frustrated and wanted to say something. (I’ve also had it with doctors like that.) He also sent me for a CT scan. For this they had to inject a contrast agent and… it took a doctor and two nurses seven attempts to find a vein. That’s right, they poked me with needles in seven different spots until they finally found a vein in my foot. Ouch. (And I’ve had it with… oh, you know.) But the good news is, the CT scan was clear. But… I still have digestive issues. And ALS. And I’ve had it.