Wednesday 9 March 2011

Not for the Squeamish


This blog post will contain graphic description of my medical condition and also contains photos and links that may disturb.  Also if you are a crafter and you came for pretty photos of wool you probably don't want to read this post.


I decided that this week, I won't be doing a Work in Progress Wednesday post.  Instead I'm going to do something that is very rare for me, I am going to share information about my health.

This blog makes no secret of the fact I am disabled.  The explanation is in the name!  I sometimes make passing reference to "having a bad time" or the pain being worse and also mention needing the wheelchair or scooter, but I have never been particularly explicit about my condition.  That was a conscious decision my part as this blog was always meant to be about the "crafty" bit of the title.  This blog was supposed to be my escape from pain, but somehow this blog and the readers of it have become a big part of my life. 

This week I went to an appointment with my new consultant.  I was amazed to say that it was a great appointment and he has consented to operate on me to try and alleviate some of my pain.  As he was poking and prodding and asking questions I found myself answering them very openly and without embarrassment, which is normally very hard for me.  He treated me like an equal who knew her own body and knew about the medication etc that I was taking.  I was part of the decision making process.

When I came home I was so excited about the appointment that I had to share with my online friends via Twitter.  When everyone was pleased for me I realised that they didn't really know why I was so happy.  I decided that would share just this once, the medical condition that changed my life.  It is ADHESIONS.  I used to say it was endometriosis, but now I know that condition is just a part of the problem.

Adhesions are scar tissue that forms inside the body, usually as a response to surgery, injury or inflammation.  The scar tissue usually ends up sticking things together that shouldn't be stuck together.  This can cause organs to be twisted or constrained. I won't link to pictures here, because you would probably feel very sick indeed.  If you have a tough constitution, you can do a search for photos.  Considering how common this problem is, there is very little publicity or support for it.  There is an International Adhesions Society but not a lot else.  Strangely enough it is actually Endometriosis Awareness Week.  If you want to know anything about this condition there is quite a lot of information available these days, through the magic of the Internet.  If you are in the UK, Endometriosis UK is a great support network.

People with endometriosis are highly likely to be susceptible to adhesions.  When endometrial cysts occur, often this damage turns into an adhesion.  I was diagnosed with endometriosis in 2002, following surgery to remove a fallopian tube damaged by an ectopic pregnancy in 2001.  You are more likely to have an ectopic pregnancy if you have endometriosis.

After being diagnosed in 2002 with endometriosis, that became the target of my treatment.  I was being helped by the gynae department.  That treatment was really helping me and I was improving significantly, when in 2004 I was admitted to hospital.  I went because I was throwing up and couldn't keep my pain killers down.  I wanted pain management and to stop throwing up.  I thought it was a bug or an infection.  The hospital agreed with me and put me on antibiotics and a drip, gave me some morphine and an anti-emetic.  But I didn't get better and finally after 3-4 days they decided it was appendicitis and they were going to operate.  I was told to go nil by mouth from midnight and someone would collect me in the morning for surgery.  I did as I was told but nobody came.  I was in a room on my own and had to go wandering up the corridor for help.  They had somehow forgotten me.

I was moved to the surgical ward that afternoon and told I would be operated on that night.  Then my surgery was pushed back, because there was a big motorway pile up and the ONE operating theatre that was open over night had to be used to save lives.  At 1am I felt my appendix rupture.  I was finally operated on the next morning.  I woke up with a massive wound held together by staples.  Originally I was going to have the appendix removed via keyhole surgery, but because the appendix ruptured they had to have open surgery.  After this surgery, instead of getting better, as I had been doing before hand, I was getting worse.

By 2006 my pain was unbearable and after keyhole investigation it was decided that I would have my adhesions removed, again via keyhole, to minimise any further damage.  The appendix surgery combined with the endometriosis had created a mass of adhesions. In 2007 adhesiolysis surgery happened.  It took 5 hours.  The surgeon was visibly shocked at how bad it had got in in the 9 months since his investigations.

After this surgery they kept treating the endometriosis and finally in 2010 they felt they could say that my endo was controlled.  My endometriosis will probably remain controlled for the foreseeable future.  We finally found the magic bullet that stoped my periods that I can also keep taking for years.

Now we know that the endometriosis is controlled, there is nothing more the gynae department can do for me.  They have referred me across to a keyhole surgeon.  A real specialist in gastro-intestinal work.  I'm going to have my adhesions removed!  After this surgery I'll probably still be in pain because of all the damage done to my body over the last 10 years.  I know this, because that is what happened the last time I had my adhesions removed.  I will still suffer from chronic pain, but I can find ways of managing that.  What I can't manage is the pain caused by the adhesions.  I have to be careful as adhesions pulling causes swelling and pain that can take days to calm down.  If the pain I am experiencing, is NOT being caused by actual damage being done, then I can push through it and work at coping.  When you know damage is being caused, you  have to stop when it hurts.  When you hurt all the time, though, at what point do you say, "I have to stop now".  It's a hard path to walk,when you don't know what kind of pain you are experiencing.  When I know that the pain is just chronic pain and I don't have to worry about causing damage I can work around it.

Now I only have to wait between 4-6 weeks and I should be in surgery.  I should be getting a date soon.  The waiting list is meant to be 6 months but the surgeon told me I had been waiting long enough and bumped me to the top.

I am hopeful that my pain will be reduced and that I will be able to start increasing my activities, rather than cutting them back.  It will be nice to spend time with friends and family without having to go and lie down all the time.

After all that health information, I am going to talk about the Weekly Photo Challenge.  It is related, I promise.  Since starting the Weekly Photo Challenge, I have found myself digging a bit deeper into myself to meet the challenge.  Craft is all about the useful and the attractive, whereas photography is all about the interesting and challenging.  As I am limited somewhat in my location choices for photography I have found myself looking closer to home for my subject matter.

This week's challenge subject was Messy.  My first reaction was, point the camera at pretty much any corner of my house and click.  Strangely enough this didn't work out very well.  Messy is a hard thing to photograph well.  Messy by its very nature is untidy and cluttered and unfocused.  This doesn't work as a photograph.  After all my thinking about my health, there was one subject matter that sprang to mind.  The scarring on my navel.  I have had 4 keyhole procedures through my navel and one laparotomy (open surgery) that went around it.  My navel is very messy.  I took a series of photographs.  I came up with three that I was happy with as photographs.  This is where is gets a bit grisly.

I think this one is strangely beautiful.  The scar almost looks like an ink spot, or an asteroid strike on the moon.
I really like the texture of the skin on this one.  It felt very strange to be sorting through these photographs of a part of my body that I hate.  This area is the outward symbol of the damage that is inside, that no one can see.  I never show these scars to anyone.  The only people that have seen them are my partner and medical staff.  In a way, photographing these scars made me realise that in the abstract they are not ugly and detestable.  They are just part of me and who I am.  It was very liberating.  The photograph I actually submitted was this one.

This photograph really captures the scarring very well.  I decided quite early on that a black and white photograph was going to be the best way of portraying the scarring as an abstract form, rather than a graphic medical shot.  This photograph still shows the skin texture and the feathered scar above the navel.  The other two photos didn't translate well into black and white, which is why they weren't used.  This photo also shows the scar running down my abdomen from the appendix surgery, which the other two do not.  Making this photograph in black and white makes the viewer think about what they are seeing.  My partner didn't know what he was looking at until I showed him the colour photos.  That is what I want the viewer to do, look at the photo and then wonder about it.

I don't want this blog to become a health blog.  This is about my craft.  But at the moment my health and my craft are entwined, so I decided to share with you.  The surgery will probably be filling my mind for the next few weeks, so expect some posts along the lines of "post surgery crafting" and "knitting for hospital stays".  But hopefully there will be no need to give such graphic information again.  I promise I won't show you post op photos!


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