Running on low

Today, I received my letter for my next hospital admission, which will take place in just under two weeks' time. However, there's a huge, huge catch.

I was told today that I need to get a FBC and clotting screen done prior to my admission to check that I'm OK for surgery. Problem? My serum iron level is 2 micrograms, but according to my haematologist, it's supposed to be 100. I don't eat red meat by default, so I literally have no way (apart from the transfusion) to raise my iron and therefore my Hb levels. We are really praying that the transfusions are able to top up this huge deficit, because I'm really bearing the brunt of this.

I can't get changed without my body hurting all over and without fainting. I can't seem to do anything without feeling like I'm going to pass out. Things that just used to make me ache before, now give me extreme pain. Getting changed from showering this morning, my body hurt in the same way it used to towards the end of a long-distance run, if not worse. To top that off, the nausea and dizziness that came over me was unbearable and I just felt so inadequate and frustrated that I can't even do the simplest tasks without feeling this way.

Yesterday and today have been difficult days; counting down the days to the transfusions, infusions and surgery is painstakingly slow. I'll also be getting a DDAVP infusion soon, and when I'm admitted, to boost my coagulation and make my blood and platelets behave! I need to go up to the hospital to get yet more blood taken, this will be the fifth time in two weeks that I've needed to get it done. So far, I've had  on average ten bottles drawn each time, and on top of this, I bleed about 100ml blood per day from what is/was the AVM.

Everything just feels like such a drag; I have no energy to do anything, and everything I feel like doing makes my head swim. I've never felt like this before, maybe I've had off days, but this has been a string of days, that has become weeks, of feeling like this. I'm just glad and thanking my lucky stars that I have a great haematologist and surgeon who want to help me get better.

Big update!

I can't believe I haven't posted for such a long time! Hope everyone had a great Christmas, I certainly had a good time with my family and boyfriend. We went to a Chinese buffet restaurant and we really enjoyed ourselves for the festive period. My boyfriend stayed over and it was just a lovely, cosy, time together.

As for a health update, I have recently been diagnosed with a platelet disorder of an unknown aetiology. At the moment, we don't know what the exact disorder is, but my platelets don't aggregate in the way they should; in fact, they don't seem to aggregate much at all. My Hb levels are extremely low, hovering around the 7g/dl mark and as such I am due to have some transfusions this week or next.

Surgery is also taking place for me on Wednesday, 6th February, and I'll be inpatient for at least four days. We planned this before learning of the coagulation problems and my extremely low Hb levels, so I'm presuming I'll be in there for at least a week. Not sure though, but I hope to be blogging during my stay, if and when I can. I am not sure about what will happen with regard to the clotting problem and the low Hb during my stay, as these are likely to impede my recovery as they have done in the past. I am, however, just glad that a cause has been identified for my excessive bleeding and that there is prospective for a cure or at least a treatment for whatever problem exists.

For this upcoming operation, my surgeon will be installing a negative-pressure wound therapy pump to the surgical sites to draw out fluid and blood that could accumulate under the dressings. This is one thing I'm pretty nervous about since I'm presuming it hurts quite a lot, but I'm optimistic because we have not yet tried this. I've heard lots of good things about it, and my surgeon finds the idea promising, so I can't help but feel the same way!

Medical school has been going pretty smoothly so far; apart from the fact that I may be missing an assessed module that begins on the Monday after the operation. I also have an exam that takes place on Friday, 8th February, but am pretty sure that I will be able to get a no-detriment mark for this, as I have been advised to do for the previous exam.

I have had the most amazing Christmas period ever, and just wanted to thank everyone who cares for me, thinks about me and looks after me. I have had a really happy year, and hope that this year will be happier for me, and for everyone!

Chronic illness and an update

There are so many things that I wish I had done in my life pre-Ehlers-Danlos Syndrome. Of course, I never knew I would get it at the time that I did, but as we all know; hindsight is a wonderful thing.

I came back from university today, and felt like going for a run. It's just a dear shame that I have not been very well for the last year or so, ridden with infections and GI problems, and couldn't go because I'm so weak.

My best friend has been most wonderful to me though, and I know she really deserves a mention here. Without her, I would have more bad days than good days, and somehow she manages to understand why I may be sad or upset, yet tell me that it's okay and I should move on. I'm just a very, very lucky girl, and I know it. She's also having a hard time right now with chronic illness, and her school isn't helping any. In fact, I feel like they're picking on her for it, and I feel terrible that I can't be there with her to stand up for what's true.

Another very dear friend to me has gone with her family to Disney on a Wish Trip, and I've been thinking of them all every day since they left. It's such a joy to read the updates and see photos of what must be such a happy time. It's only sad that illness is forever close by, but my thoughts and prayers remain with them in Florida, for a safe, exciting trip and return!

So, I've been put on Clindamycin as of last week (I do, in fact have osteomyelitis), and I am really bearing the brunt of the symptoms. Apparently it's a high dose, and I'll be on it for two months - I've already had GI upset, and yesterday didn't  make it to uni, as I was unwell on my way in (let's not go there...). I saw my GP yesterday and he's also sure that it's the antibiotic making me this sick. I feel weak and wish that I could just spend my days in bed to recover from what has been such a harsh week on my body. It's a shame that there are still many more weeks to come.

We are no clearer as to what comes next for treatment. I keep seeing people over and over again, but I don't want to and don't like it. My surgeon wants to get all the opinions possible but I am growing tired of being sent around, having to explain myself all the time and hear the same kind of stuff repeatedly. I also have issues with my orthopaedic surgeon and some of the letters he writes, as they portray me in a different light to what's reality and makes me feel awful about myself. I will definitely ask to be copied into the letters in future. Anyway, sorry for the long absence, I'm looking forward to the Christmas break now, and hope you are too. Lots of love x