It turns out that the face pain I’ve been having is something called trigeminal neuralgia. It had become more frequent so I finally went to the doctors. It isn’t necessarily to do with MS or the treatment, but it is VERY common in MSers. At the moment I’m not taking anything for it but we’ll see a couple of weeks from now. 

I just thought I’d write a quick update, I suppose this one is more for me (so I have a chance of remembering)…

On 3 or 4 separate occasions (including my birthday) I had a HORRIBLE pain down the right side of my face. The longest ‘attack’ lasted on/off for about 1.5 hours, but it would appear that rotating the skin near my temples helped disperse it, but not always completely. Like this: 

I’ve also had a bit more trouble with my legs and back. Stiffness & pain have been an issue for over a year now, but it was ‘getting better’. I’m not sure if it’s worse than it was, or I that I had gotten so use to not having the problem that having them back just feels worse. I am waking up with some stiffness now which is definitely new (it used to ‘disappear’ overnight).

My memory seems to have gone downhill a bit too, but that was rubbish to start with, MS aside… The fatigue is also a big problem, but I think that’s probably pretty normal to be fair.

My consultant did say that things might have to go down hill a little before getting better. I’m always being reminded that Lemtrada isn’t a quick fix and believe me, I know it!

[19 weeks, 2 days post R1]

I had my first successful Facetime urine dipstick test today! This might seem like a strange thing to be excited about, but my phone wouldn’t work last month so getting the test done ended with me going to my local minor injuries department just to be able to get it done - what a palaver!

Just in case you’re wondering….

I was given a bottle of dipsticks and a print out of the chart to compare my results with. My MS specialist nurse then contacts me via video chat so she can see the results herself too. I do the test and compare the results, telling my nurse (Bernie) what I think they are.

I’m pretty used to doing this type of thing as I have a similar test for the water in my fish tank, so this works quite well. Also, it save at least 2 hours driving/missing work/money so is a great way to do this test!

Thank goodness for modern technology right?

Luckily the second round of antivirals worked it’s magic and I’ve been shingle free for a while now. There’s also been nothing new to report and I haven’t heard anything about the results of my blood tests/etc. which I’m hoping is a good sign!

Still very fatigued, but coping well apart from that.

I’m back on the anti-virals again as it would appear I have shingles - poo. I actually feel ok to be honest, but where the little scabs are is very sore to the touch and a little itchy.
I noticed 5 tiny little see-through blister things in a line on the right side of my tummy which were very painful to touch. We didn’t know what they were so ‘burst’ them (they were tiny so this didn’t take too much effort), but this morning they were still on the painful side so decided to call the out of hours doctor (darn bank holidays). I’m now on 800mg of aciclovir 5 times a day for 7 days.
What a way to spend a lovely sunny day! Haha

[7 weeks, 1 day post]

I had my first check up since treatment. Went to the hospital an hour early, as instructed by my neuro, to have bloods done. There was an hour delay (nothing new there haha) so thought my results would definitely be there for my actual appointment…I was wrong! So I’m not entirely sure how my immune system is doing, or what my t-cell count is, but I haven’t heard anything from my neuro team since, so I’m thinking the results couldn’t have been that bad.

On the plus side I got to catch up with Mark and compare how we were. Whilst in the waiting room met a guy that had just finished Lemtrada (so 5 years on) who was kind enough to answer all the questions I kept on throwing at him. We also had a laugh at how warped our humour has become since being diagnosed with MS, something which hadn’t occured to me before that, but I suppose its par for the course.

Oh, and I was taught how to read a urine dipstick test, so there’s that…

Symptom udate: I am still having headaches which neuro says sound like migraines (which I have had in the past). Still VERY tired, possibly less over the last week, but could be that I’m just getting used to this level. My memory and (spoken) word recall seems to be getting worse and the ability to properly concentrate seems to have stopped for the time being. Altered sensation here and there with a bit of stiffness in my limbs - mainly left side (all happened before treatment too). On a good note, I have finally gotten rid if the cold I had (yay!).

so you are telling me that there are people who are not aware of their spines 24/7

who do not feel pulling and aching with every move

for whom something that fell to the ground is not a serious problem

is that what you’re telling me

Me: I have tried and tested my physical boundaries for 15 years, I know what I can and can’t do. I’m not a school child any more, nobody can force me to actively and knowingly hurt myself. CripplePunk4eva it’s a revolution I suppose.

Also me: Pain is temporary, the social repercussions of not keeping up and doing your part are not. Sure I can carry that thing as well :)

lifewithchronicpain-original:

I’ve been to the hospital many times, and I’ve had bad nurses and doctors and good nurses and doctors. My recent overnight stint had pretty decent doctors and nurses. As patients we will certainly remember the more unpleasant experiences and be rightly angry about them.

However it’s important to remember that not all nurses are the bully from school. Many are genuinely nice and caring people, like my aunt who was a maternity ward nurse for many years. Many of these people are put under pressure of a for-profit medical system that forces more patients on less nurses. We should be outraged at genuinely cruel medical professionals, but if we want to be acknowledged as human too, we should do the same for them and advocate for better working conditions for nurses.

Yeah they’re supposed to be professional and not be rude but is anyone truly perfect at the end of a double shift with double the work? And some nurses are disabled too. I’m not against venting against terrible nurses but when we act like the problem is just the wrong people going into nursing we ignore a large problem about the state of nursing jobs and overworked underpaid caregivers that ultimately hurts and potentially kills us. I personally don’t want to do that.

I had some GREAT nurses when I was in for my colonoscopy. After, in recovery, my nurse went so far as to spend 10 minutes using alcohol wipes to gently remove my IV bandage, because I told her it rips my skin because of my fragile EDS skin. Did she have to do that? No. Did she have other stuff to do? Yes. Did I really appreciate it? SO MUCH YES

If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud’s, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.) 

My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.

I would greatly appreciate it if you would share my story.  I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again. 

Ihttps://www.gofundme.com/f/gqqv9b-help-me-fight-my-rare-disease?fbclid=IwAR2o-6qxbbGFA27n9CQhcxBv8TrlC8OILGFfVN8oyG0aFlh1Xd3OTQ7nWlI

What the literal fuck is this nonsense? Who let this bitch practice medicine? Did anyone think to suggest putting some fucking medical evidence in this piece?

Thoughts on power chairs vs. manual chairs with power assist devices? I’m debating between them, but most of the sites don’t seem to have customer reviews which doesn’t help.

It’s 4am and I’m up because my stomach is not happy. I don’t know how I’m supposed to wait until December for my colonoscopy when every time I eat I get cramping and diarrhea. My health is still going downhill very quickly, and my meds don’t seem to be helping much. I’m going to email my EDS doctor and let him know what’s going on, because at this point. I feel like we need to re-evaluate what we’re doing to treat my condition.

overexcitedneurons:

mamoru:

imagine if shoes cost $2,000 a pair for ones that do not actively hurt you and are designed to be walked on for more than just a few steps. $2,000 at minimum for the luxury of being able to move around without being injured. that is what wheelchair pricing is like

While 2k is the average, I found a $200 one. Not that I’ve spent that on sneakers, and I used to go for nice Nikes too. And this doesn’t add in shipping and customization. But maybe your physical therapist could do the customization adjustments for you.

The problem I have here is that, yes, manual wheelchairs can be found relatively inexpensively. However, powered, or power assisted chairs are INSANELY expensive. I have Ehlers Danlos Syndrome, and as a result, both of my shoulders sit pretty permanently out of socket. I can’t safely use a manual wheelchair without causing myself more irreparable damage, but insurance won’t cover a power chair because I can walk, although it is painful and I cannot walk for very long.

Medical equipment should be affordable! It doesn’t cost $3000+ to manufacture a power chair, and no one can convince me of that. And while we’re at it, give ambulatory people power chairs! A wheelchair would help me so much, I would be able to go out and actually enjoy going places instead of turning down friends because of the inevitable pain I’ll be in if I say yes. I’m so tired of saying no to my sisters when they have plays, concerts, etc, because I can’t spend 4 days recovering.

Ahem. Sorry. Rant over.

Sup zebras, I’m starting an EDS YouTube channel. It’s called Braced For Impact (because this bitch is buying new braces ever other week it seems). No videos yet, but I just got my new phone, so let the filming commence!!!

My mom is suddenly mad about “having” to go to my GI appointment tomorrow? She always wants to come to my appointments, plus it’s better to have someone with you, especially being a young woman. And this is the first time ever going to this doctor/ practice.

Also, she wants to make me take an uber to the doctor so she can go out with her boyfriend. How fucking childish.