Journal

I got the scan results yesterday, and nothing really major showed on it. A couple more prolapsed discs, but nothing touching the cord. My Dr thinks that the increased pain might be due to my reduced mobility and ligaments seizing up, so has recommended more massage. I have a great lady who does this for me, so will probably be seeing her one a weekly basis - its just a shame that she isn't covered by my insurance.

Initially I was not sure how I felt about the results. If there had been something drastic on there, then it would mean another operation, and the year of recover that that usually takes, and I would still be as I am now because I have permenant spinal cord damage, and that will never go away, so I guess I am pleased that I don't have to go through anything, and at least I will not get worse just yet. There is always the possibility and almost probability of further surgery in the future (I was born with a very narrow spinal canal) so a slipped disc to someone else could be lived with, for me it could compress the cord really easily - just my luck eh? That's why they think all of this started so young for me.

I saw a phychiatrist today, and he told me that I'm not depressed, its just that I am going through this alone really (well mentally anyway) and I told him that using this site and writing the journal has taken me from not being able to discuss what is wrong with me without crying to being able to talk about it calmly and I think that I have got my head around things really. Its just that all of my best friends emigrated to New Zealand in 2000 (just after my first op) and I don't know anybody where I live because I am at work all day. I do have some good colleagues who I can talk through things with, but I don't really talk to my husband about it because he is such a worrier, and I don't want to add to that.

He helps me so much physically, but mentally, I think I have not allowed him to, and he being a typical bloke (sorry to all you non typicals on this site) has put his head in the sand and is putting his fingers in his ears singing la la la la not listening, if you understand what I am trying to say.

Anyway, the upshot of it, is that the Pshyc (jeez, I can never spell tha word) has referred me to a colleage, and he says that basically I have been coping on my own since I was 16, and I need someone detatched to talk it all through with. For the insurance company he has had to label it (reluctantly I hasten to add) Adjustment disorder. He gave me no meds. It was quite reassuring that he said that anyone who has been through what I have, and in such a short time would be reacting in exactly the same way.

Anyway (you may have realised that I start many paragraphs like that, and I write for a living!!). Anyway, I feel positive, although my nose REALLY hurts. On wednesday, just after my nap (drug induced) I went into my office, and was reaching for something off the bed and tripped over my wheelchair and went nose first onto the wooden bed post. It hurts really badly, and when I tell people they laugh! No black eyes yet, but a very swollen and painful nose. If I don't laugh about it, I'd cry! There was blood everywhere (that has never happened to me) and all you parents out there who have experienced many a conk on the nose from your child's head will feel sympathy I am sure.

Had scan today. It hurt to be lying on my back - my spine hurts so much. They saw that I was in distress and stopped the scan for a while. Get the results on thursday.

Had a blow up at work today, with a guy who I usually get along with really well (he's a fellow spinal surgery veteran!) Anyway, I zoomed off into another room in my wheelchair and had a cry. By the time I got back he had emailed me an apology so everything is ok! We are working up for a release (I am a technical author and UI designer) and we are all working so hard and are all on edge, and what with the shock of having to have the urgent scan it got too much for me I guess/

Its been a while since my last entry. Things have been pretty much up and down.

I can't remember whether or not I told you that was turned down for disability, well that sent me into a little tail spin, and then to make things worse, I have started falling down at least 3 times a day. My legs are just giving way completely. I cannot even get out of bed in the morning, and my hubby has to help me, and even then, when he thinks I have my balance and lets go, I just collapse again. This has been happening for the past 6 weeks or so.

I have also been having such pain all down my spine, each time I take a step it feels like hell, and lying down? Don't even think about lying on my back, and even my side sometimes is impossible. I have my magnets strapped all down my spine, and they are doing their best, but I am very worried that it is the disc at T4.

Anyway, back to the disability - I followed a friends advice (who all said appeal) and went to the Citizens Advice Beureaux (for those in the US it is an organisation that offers free advice, anything from legal, to filling in forms for state benefits, debt problems - anything and everything). I went to see them with Pete (my husband) and he was sceptical to be honest, but they read through the letter that I had written trying to correct the form that I had sent in for the disability. Apparently it is the hardest of all the state forms to fill in and only 47% of people who apply get it, and alot of them have to do it by appealing.

They thought the letter was good, gave me some pointers, and suggested that I kept a diary for two weeks detailing my problems with my mobility and care needs. I did just that, and day by day I was getting worse. I went back to them last Thursday and saw a different guy. You couldn't have hoped to have met a nicer and more helpful guy in the world. He suggested that we fill in the form again (well he fill in the form - that is the same thing that happened to my friend) as they are trained to answer the questions in a way such that you can get the most benefit (not cash, but you know what I mean) out of it. He then rang up the department at state, and asked them whether we could send in another form along with my accompanying letter and diary, and they said yes. He also advised me to get a colleague to write a statement about my mobility and care needs during the day at work, because most of the stuff details things at home. I have duly done this and send it off on Friday morning.

Anyway, the same day as my visit to the Citizens advice beureaux, I had an appointment with my neurologist, who is doing my pain management. I turned up in my wheelchair (I am not happy going anywhere alone without it at the moment because I stumble, lose my balance and hurt myself.  I told him all of this, and about the pain in my spine etc, and he literally said, lets go. I said "Where to?". The MRI department. His first thought is my neck, but he said to the receptionists, I want this MRI this week, and I want the resutls by Thursday. Mark it Urgent. Now this started to panic me a little. The ironic thing is, before that I told him about the increased pain, and he told me to start decreasing my Tramadol! Neither of us think they aren't working as well as they should as I have been on them so long, and with the cocktail that I am on, - I have had to up my clonazepam to 3mg per day just so as I can lie still in bed.

I am also suffering severe dizziness at the moment - will go to the GP tommorrow. Anyway, I have my scan on tuesday, and see the consultant again on thursday with the results hopefully to find out whether there is something that can be operated on, which to me is a good thing, because it is something that can be fixed, or whether there isn't which means this is my life from now on. Pete and Ben have been so strong and helpful bless them, Ben is having bad dreams and I am worried that they are about me falling - he sees me fall a couple of times a day and if I am out of his eyesight, then he is constantly asking me "Mum are you ok?" He is 5 years old for goodness sake. He shouldn't have to worry about me like that. That is what breaks my heart. As for Pete, I have no idea what is going through his mind. He is being a real trooper, and being really loving, but seeing me like this, what must he be feeling. I guess that its a good thing that I am seeing the Pshychiatrist for the first time the day after I get the results!

My friend (whose husband had a stroke about 3 years ago and gives me such great advice) said that I should encourage Pete to get some councelling of some sort, but he will not hear of it at all - he's putting his head in the sand, not talking about it to his friends etc, and keeping it all cooped up inside. Surely that can't be good for him?

Anyway, back starting to hurt - having to use my home office computer today because my laptop fried on Friday. A funny smell started coming from it, and it turned itself off. At least its a work one! Hope they supply me with another one cos its easier writing from my armchair sometimes (that's probably why it overheated and fried) but why are they called laptops if not to sit on you lap that's what I say.

Anyway, I shall fill you in when I get the results.