Ehlers-Danlos Syndrome Awareness Month

Today is May First! Or well, it's already past midnight here as I'm typing this, but matters less!

May First marks the start of Ehlers-Danlos Syndrome Awareness month, a month where us living with Ehlers-Danlos Syndrome do as much as we can to spread awareness and knowledge about our relatively rare genetic condition! Now we do like to spread awareness all year, but May is extra special to us.

Now I do blog a fair bit about Ehlers-Danlos and how it affects me normally as well, but now in May I shall try to do it even more, and I may even try to put together some YouTube video about it. I used to have some videos up on my YouTube channel but recently made them private due to them not having the best quality and they were recorded directly on YouTube so no editing or anything was done. Think I shall attempt to make an EDS awareness video combining both photo and video and edit it in Movie Maker before uploading so it looks more neat and has a better flow to it, I may try some vlogs again as well, but I'm pretty camera shy and with my brain being the way it is...

So you can imagine trying to record a vlog and staying on subject throughout the whole video... I also feel really awkward talking "to myself" on camera. But I'll try! It's for the greater good and if it can educate people about Ehlers-Danlos Syndrome, maybe help someone currently who's running rampant without a diagnose, it's all worth the awkwardness! 

Seeing how I have been feeling a bit better lately despite my pretty severe pollen allergy and a pollen season from hell, I don't look too bad at the moment so yeah, videos may be coming soon!

I'm also beginning to suspect that I may have some kind of cortisone deficiency in my body. I'm going to discuss that with my doctor ASAP as I started to feel better the same moment I added the Betamethasone tablets for my allergy a couple of weeks ago. This pollen season has really been...

So I haven't been allergy symptom free even with the Betamethasone, but even WITH allergy symptoms still (though they've been kept at manageable levels with all my medicines) I have been feeling a whole lot better in general than I do on your average random Thursday anytime of the year when I'm not taking any Betamethasone. 

I've also gotten a bit more normal appetite compared to my usual barely wanting to touch food kind of appetite, and the pair of jeans that I bought on Good Friday are already like a size too big and I normally stay the same when it comes to size, possibly due to my body often being in starvation mode when my appetite is very low, and hence storing all the nutrition that it does get. 

It's just a theory, but I am definitely willing to try it out for an extended period of time, especially since we're talking really low doses of Betamethasone. My sweet spot seem to be as little as 1mg twice daily or 1.5mg twice daily, so yeah, 2-3mg per day! It's such a low dose that it doesn't really even pose any risks when it comes to your body's own production of cortisone. 

I know taking any kind of steroids is bad for connective tissue though, but again, it's such a low dose so it shouldn't be a problem, and if it does work out and giving me more energy and a more normal appetite, the benefits definitely outweighs any possible risks! I really could do with weight loss for my long term health (at this time, I have no health issues at all that can be blamed on my weight) and having a bit more energy to do things is never a bad thing! It's not a cure, but yeah, just being able to get on with my day a little better, being a little bit more spontaneous with activities and being able to drive a bit more again, to me those little things are just utterly amazing! 

I have been doing more in the past couple of weeks alone, than I'd normally manage in a month or two, plus that I've been driving more in just one week, than I've done in a 3 month period lately. If 2-3mg of Betamethasone per day is giving me all these benefits, then being on that medicine is the right thing for me and I will fight for it if I have to!

On a completely different note before I finish this blog post.

My blog has reached over 10,000 hits! Thank you so much everyone who's reading this and reading my posts! When I first started this blog some years ago, I could have never imagined it would ever reach 10,000 hits! But the number definitely keeps me motivated to continue writing as often as I have something to write. 

This shall be celebrated with a short clip of the fireworks that were displayed at the spring celebrations I attended yesterday (April 30th). 

Enjoying spring!

Despite me being awfully allergic to most types of pollen outside, I'm doing my best to enjoy the absolutely beautiful spring weather we're currently having in my area.
We're more or less having a heat wave and the trees outside are literally exploding! To be honest, I should probably sit in an isolated tent with my own air supply, but no, I ain't going to do that! I shall be, and am outside! I have to medicate for it a lot of course, I'm currently taking oral steroids, oral antihistamines, allergy eye drops and steroid nasal spray just to stay on top of my symptoms somewhat, I even had to increase my oral steroids yesterday even though I was supposed to start tapering down, but tapering down is just a no go at the moment when the birch pollen is peaking at High+ levels outside! I'll simply have to live with the effects of steroids for a bit longer.

Yesterday my parents and I went outside to have lunch out in the green, starting the BBQ season because of the nice weather. Today we went out to a nearby old castle ruin for some afternoon coffee outside and photographing!

I dare say I'm struggling to type this now as the trip today really make my hands hurt awfully and I was extremely fatigued when I came home, was unable to move at all for a couple of hours, it was rough terrain for me to get around so my hands and wrists took quite the beating, at the same time I wasn't feeling well enough to walk that much, so yeah, Ehlers Danlos Syndrome and pretty severe pollen allergy at the same time can be quite a bitch! Ring splints on left hand minus little finger, and a wrist brace on my right wrist, just to be able to type at all at the moment, plus resting up in bed for the fatigue. Could do with some extra painkillers too for my hands, but I'm not going to, I'm just taking it easy instead, trying to limit my typing tonight at least on the computer. Just finished watching a movie, Brave, and may watch another movie before sleep, or even try to make a YouTube video for once, I just don't know what I'd say if I was to make a YouTube video tonight so I'm guessing I'll just watch another movie.

Anyways, my hands are hurting too much for typing on computer now, so I shall round this post off with some pictures from the trip today!

It's that time of the year again!

Well, it's spring and as always in spring, trees will turn green and attempt to reproduce using their "biological warfare" as I like to call it, namely Pollen! The great fear for us who suffer from seasonal hayfever.
I've been allergic to pollen since my early teens, and for each year it basically just gets worse. Despite my best efforts to keep my symptoms at a manageable level with antihistamines and local steroids, I have since 2010 ended up with needing oral steroids or long acting steroid injections to get back in control of the situation.
Now it's that time of the year again, my pollen issues are at its peak despite taking both Desloratadin tablets and Mometason nasal spray and inhaling Ventoline when needed. I'm now on this season's round of Betamethasone tablets too! As much as I dislike taking cortisone type medicines due to the possible risks with it, it is indeed a necessary evil when it comes to this allergy, and the benefits from taking it greatly outweighs the risks.
See, cortisone isn't good to take if you have a connective tissue disorder that's already weakening your connective tissue, as cortisone may also weaken the tissue. But I'm just on a low dose for maybe two weeks, so it should be fine. In the past years when I've taken cortisone of any kind for my allergy, I have not noticed a negative impact on my joints at least. But the general recommendation for connective tissue disorders like Ehlers Danlos Syndrome or Marfan etc. is to avoid steroids as much as possible.

Another thing that I do get with cortisone tablets is secondary diabetes. My blood glucose gets elevated and even goes above the diabetes threshold at times. It's also a common side effect of cortisone. But again, I'm only taking it for such a short time, so to me, the discomfort of an elevated blood glucose is a pretty cheap price to pay for feeling so much better allergy wise. I do however keep a blood glucose monitor at home, I've had it for years due to fluctuating glucose levels even when I'm not taking cortisone. But when I am on cortisone type medicine, I test my levels regularly to make sure I don't go dangerously high all of a sudden.
Today I've already been kinda high-ish and my levels are elevated compared to my normal, but not alarmingly high. Do I feel that my levels are elevated? Why yes, I do, but it's not out of hand. I get higher levels on Prednisone or Prednisolone than I do on Betamethasone, so I'm glad to be able to take Betamethasone which along with not giving me as high levels, also doesn't give me that "steroid restlessness" and insomnia that cortisone medicines may cause.

Hoping to not need the Betamethasone for very long this year, but I am expecting a couple of weeks because that's the norm for me. Also hoping my joints will behave this season as well. My left shoulder is clonking enough and subluxing even when I'm not taking any medicines that's affecting the tissue.

On a completely different note, my wheelchair had a flat tire yesterday, so now I've experienced that too! Sometime has to be the first for that as well. Fortunately I had a spare inner tube at home so dad and I could change the inner tube of the tire. Didn't find a leak immediately on the old inner tube, but the tube did lose a lot of air within just hours yesterday so it was best to change it. Old tube still has some air in it and will see when I wake up if it has leaked more or not, and dad may check it more for leaks too. We're not sure if it's the rubber or actual valve that's broken, just that it is something that makes the air seep out at a slow pace.
And I really need to do some maintenance of my caster wheels too! Should do that tomorrow.

Spring seems to have sprung, and the biological warfare has begun...

As mum and I were outside with my cat Nisse yesterday, we saw a real spring sign outside, we spotted blooming dandelions! It's also getting warmer outside and being outdoors is rather pleasant temperature wise and weather wise.
However, it's more than us humans who likes the warmer weather, I am of course talking about the trees outside, they burst with joy over the sunshine and warmer weather, releasing their yellow powder of mass sneezing!
Yup, I'm already pretty badly affected by my pollen allergy, and that's just with low to medium levels of Hazel and another tree not even Google translate could find the name of. I'm having a sore throat and this morning when I woke up, my nose was full of what felt like wallpaper glue! A cold you may think, but no, I do get this way from allergy, it behaves a bit like a cold but without feeling sick like I do when being down with a cold. With pollen allergy I get out of breath very easily and my nose doesn't really get runny, I get the wallpaper glue instead. I've taken antihistamines for over a month already to be well prepared for the sneazon also known as spring, but seems I will need to add Betamethasone within the next week anyways. My nose got slightly better today after starting with the fluticasone nasal spray again, which also indicates it's allergy and not a cold I'm having. The fatigue is pretty bad as well, which also indicates allergy. I kinda wish the trees would have waited with their war until after my mum's birthday party on Sunday as I need as much energy as possible on Sunday and next week as I have so much going on.

Other than sneezing along, life is rolling and I've had a great chat with my Chronically Awesome friends again tonight. It's so nice to have a safe haven to just talk with others, no judgement, just talking and listening, supporting each other and share experiences. There's no comparing illnesses or competition who's the most ill. It's just supportive and I always feel it would be amazing to meet everyone in person one day!
At the moment I'm just writing this post, while smiling when thinking back on the chat earlier :)


The picture is of one of the dandelions I found yesterday!