Sunday 27 May 2012

Murphy's Law seeks revenge

I haven't been kidnapped-I've had a bad week. Murphy's Law has been reaching up to bite me in the backside. Whatever could have gone wrong-did so.

I had a week of hospital visits- and this is nearly the end of all that stuff-for the summer, anyway. I've been feeling like I've got another chest infection: my balance has been non-existent, and that is a huge clue that I'm not well. That is my early warning system-well, that and the coughing, the sputtering, and the general tendency to feel like crap.

Friday I went to see my immunology consultant, Matt. He's now going to put me into the hospital for a couple of weeks of cleaning out the system with intravenous Domestos. That's enough to put me in a bad mood. They didn't kill me last time, so they want another shot at it!

I don't like the idea of being an inpatient. Hospitals are bad places: they're full of sick people!! And-the food makes airline food look like it's cordon bleu!!

If they don't kill me this time-I'm close enough to Sainsbury's to go and buy my own food. That will be interesting: shopping for food with a cannula in my arm. People might think I'm on drugs-but it's Whitechapel. EVERYONE is on drugs!!

Yesterday I met my artist friend Marlene in Willesden; she is exhibiting there, so we had a coffee and went to the gallery. I nearly fell off the bus on the way-I think I came close to giving the driver an aneurysm. One second I was there, then I was gone.Another day's entertainment.

Yesterday it all went wrong. Every week I draw up immunoglobulin and infuse it by means of a Freedom 60 pump. I have a four-site needle set, and I have two syringes I fill with antibodies: two needles go into my legs, and two into my abdomen. The pump is the gold standard for pumps, and is mechanical, so I don't have to worry about anything going wrong - except when it does. And it did-in a big way! I love it when someone says "nothing can go wrong". Ha ha.

I was ready to infuse, I had all the needles on site, I twisted the switch-and there was an almighty bang, and the syringe shot out of the pump and flew across the room. I couldn't believe it. And nobody has any pumps-so I have to wait until tomorrow, when the hospital will order one. And that was the culmination of a very dreary week. My GP and my consultant both told me how serious my condition is, and that nobody knows how long it will be before I develop the infection that kills me off. As if I don't know that already!!

 So I will get another pump some time this week. And I can truly say I'm glad last week is over!! I wonder what other mischief I can get into!






Tuesday 22 May 2012

And another thing (again)

I'm starting to get used to using this new computer, although I do a lot of swearing as I hit the wrong keys and have to retype. Perhaps I should read the instruction book!!

I can see the keyboard (ish) - so I haven't hit the plateau yet. And yesterday, my friend (whom I only see once in a great while) remarked that I am walking much better. So I feel a bit of encouragement. I'm not done yet. I'm nowhere near done.

Another Kodak moment missed by YouTube

Saturday marked 92 weeks since "the event". It wasn't a cause for celebration, I can tell you! And-I've decided that once I get to two years exactly, I will stop marking the passing weeks on my calendar. There comes a point where I just need to move on, and that point is rapidly approaching. The more I count, the more depressed I feel.

On Sunday I did the usual stuff: laundry, eating, watching television, eating, some walking, eating...you get the picture!! When I get down, I eat. I should be the size of a house by now!!

In the afternoon, I decided to wash my hair. Now, in this little apartment of mine, I have an electric shower. It sounds better than it is; even with electricity, the thing just trickles. I might as well use a bucket. But, never mind, it's a shower...and when I was finished, I switched the power off - and nothing happened. The switch is in the hallway-I turned it off and on, and off again, and the pump to empty the water just kept going. It's a pump that is loud enough to wake someone in the next county - and it just kept going.

Across the hall from the bathroom is my little storage room. When I moved in, the moving men joked that it is big enough to rent out as a second bedroom. I've seen rooms listed as bedrooms that aren't that much larger than this one - and I filled it with boxes of stuff I need to go through. And the fusebox is at the other end, just past a load of boxes. The room itself isn't more than 3x5, but I had to move boxes and climb over other boxes to get to the switch to turn off the power to the shower. I did this-and what a Kodak moment that would have been, right up there with climbing over the back (and front) seats of my car to get to the door to unlock it. Another gem that will never see the light of YouTube. The fact that I found it so hilarious that I started laughing didn't help anything, either.

Someone else might have been swearing; I just found it funny-after I did all the swearing.

The only good thing - as far as I'm concerned - about living in a council property is the fact that there is a repairs number to call if anything goes wrong. So I rang the emergency out of hours number-and I swear, they all must know who I am by now (Homes for Haringey, remember them??), because an hour later an electrician arrived, swore at all the boxes, but was able to switch off the power to the shower and pump. He said someone will call me to make an appointment to investigate, then off he went.

Yesterday, I went with my friend to the Tate Modern, one of my favorite places in the city. Before I left, I actually got a text telling me that someone would come today -some time today- to have a look at the shower. And the same man arrived at 12:30. I was ready for him: no boxes. They are everywhere: bedroom, kitchen and lounge-but not in the storage room. Hah!! He was surprised.

Is it fixed? No. One part to go-allegedly-and that will be done some time on Thursday. But at least I now know where the secret switch is for the shower!

We are never given any time for any appointment-only between 8 and 5 - it is as if our time is unimportant. And, because this area is filled with disabled people, employees talk to us as if we are about 6 years old and probably deaf. On many occasions I have had to tell people off: I may have grey hair and walk with a walking stick, but I am not old, or senile, or deaf. And I never used to be grumpy!!

Friday 18 May 2012

Irradiated up the wazoo

I went to the orthopedic hospital yesterday. That was fun (I'm being a bit sarcastic, by the way!!). I was there at 9am, and got home at 5pm, really knackered!!

The Royal National Orthopaedic Hospital is a maze of buildings-it looks like a huge number of Nissan huts (or, less charitably, outhouses) have been joined together. There are several parts to it, and I had to go to the scanning unit for the MRI of my left knee (yes, I know I said the right knee, but I had a sudden attack of directional dyslexia), and a bone scan of my right knee.

I got there and was told that the MRI machine was faulty, and that engineers were going to fix it-eventually. Meanwhile, I had to take a hike to another area, where I was supposed to be cannulated and have radioactive material injected into my vein. This was for the bone scan; it would show if I really did damage one of the bolts holding my knee together. Huh-it sounds like I'm accident-prone-but I'm really not. Nobody believes me when I say that!

It took three people 8 tries before they actually hit a vein that didn't break. Now I look like I'm mainlining drugs. And-they kept saying that I have such delicate veins. You think??

The bone scanner was interesting to watch. And the MRI machine got fixed just as I was finished with the first part of the bone scan, so I had to walk outside to the little hut that contained the MRI scanner.

I know I shouldn't do this-but I find things like this funny (talk about a warped sense of humor!!). As I was about to get onto the MRI bed, I said to the scanning tech that I remembered an episode of The X Files-someone was having a scan and spontaneously combusted in the machine. She (the tech) started to laugh and said that someone else had mentioned the same thing a few months ago. I always talk about that episode when I have an MRI-usually there are several old and/or nervous people waiting for their scans, and I warn them that if they start to steam up they should press the buzzer. I know; I'm awful, but it is hilarious to see the reactions. I told the tech at Stanmore to have a bucket of water ready just in case-and she found that hilarious, and told me that if I burst into flames, she's off, and it's everyone for himself.

So I amused myself until I could get out of there and get home; I was told that I would be radioactive for 24 hours, so I should stay away from pregnant women and babies. I did ask if I would glow in the dark-but they took the question seriously. No laughs there!!!

AND- it's Friday again. How does that happen? It feels like it was just Monday.

After next week I only have a few scattered appointments over the summer-I won't know what to do with myself. Well-I do, actually. I will exercise. And eat.

Wednesday 16 May 2012

Back in the saddle (again)

Well, here we go again! I remember a story about falling off a horse: how you have to get straight back on again (after the bruising goes away, and the broken bones mend) - or you will not want to ride again.

This is probably irrelevant-but I thought I would mention it anyway.

I cheered myself up on Sunday, and by Monday morning I was fine. The weather was sunny and cool, so my balance was much better, and I went my merry way to the hospital. Oh, not a good idea, as it happens!

I wondered why nobody would tell me the results of the biopsies that were taken (stomach and colon) a few weeks ago. When I asked, I was told that the results weren't back yet. I swear, people think that patients are retarded!!

So I went to gastro, saw the consultant's registrar, and was given the bad news: not only were the biopsies positive, but I asked about the PET scan and was told that there is something on my lung. What? I have to see the chest consultant to find out.

I admit to being a baby: I cried on the way home, and I cried once I got home, and I didn't want to see anyone or talk to anyone. I couldn't bring myself to even get near the computer! Shock? No kidding. It's to be expected, since my mother's side all expired from cancer: it's part of the CVID, susceptibility to various types of cancer when you are born without immunity. So there we are.

I've had a couple of days to think about it-and, of course, nobody ruminates like I ruminate!!! It looks like I am in for a fight (another one!!). And this is a fight I have to win. I can't run from this...so now I'm fighting this plus the vestibular stuff. Oh, joy.

Well, we will see how strong I am!

Sunday 13 May 2012

A word about humor

I decided to do something (besides eat) to cheer me up. Obviously, alcohol and drugs (the recreational kind) are out of the question. I've never been inclined-and now I would just topple over. I'm already dizzy!!

I decided to watch something funny, so I pulled out the old DVDs: Mel Brooks (I'm a huge fan of Mel Brooks), Blazing Saddles and Young Frankenstein. The Marx Brothers (absolutely brilliant), A Night at the Opera, and A Day at the Races. Men in Black 1&2 (I like the dog the most).

My eyeballs are about to explode-but I certainly feel better. I recommend watching something you find funny, and doing it until you feel happy-or, at least, happier.

I remember playing hooky from school (I did that a lot) and watching a film called Killer Clowns from Outer Space. It was supposed to be a sci-fi horror film- but it was the funniest film I have ever seen. If you don't just about split your sides laughing (and whoever made it did it seriously, so that makes it even funnier), then there is no hope for you.

One step forward, 486 back

I didn't think I would take so long to write again-but I have to say, it has been one crappy week (to coin a phrase). I had to do all the hospital stuff all week, it rained nearly every day - which didn't help my balance or my mood!!- and now I am fighting a chest infection. What the hell!! I really am starting to feel like I am fighting a lost cause.

What is the point of life, anyway?? You fight and fight and fight to survive, and every time you turn around, something else happens. I really am starting to feel like a salmon, swimming desperately upstream, fighting rocks and currents, reaching the top, exhausted-only to end up as someone's lunch. Where is the fun in that??

I was very depressed all week, because my GP had the sudden desire to have me admitted to hospital and have intravenous antibiotics. Well, we all know how successful that was last time!! So I said no-and I still haven't started the two week course he gave me. I'm already 98% antiibiotics - and 2% fat and Kettle Chips!! Since Kettle Chips are my comfort food of choice, you know I'm in bad shape when I am not even interested - sad, so sad!!

I've always relied on my sense of humor (such as it is) to pull me out of a downer and help me bounce back-sooner or later. Lately, it has been later, rather than sooner. I think that part of that was the fact that my GP looked me straight in the eye and told me how serious my condition is. You have to be more careful than other people, he said. Yes, I know that. I could live to 50, or 60, or 70 or 80, and then I can develop a chest infection that will finish me off. And-various forms of cancers are linked to CVID, so those of us who were born with this condition are pretty much screwed, no matter how you look at it.

Of course, now that I have no vestibular system, I could also fall in front of a bus-or be pushed by some imbecile who expects me to sprint out of his or her way. That has nearly happened more than once. And, all I can say about that is that, if someone shoves me out of their way into the path of a moving bus, it should be something like the 91-which passes Harrods, goes down Sloane Street, and goes down the Kings Road: all the very posh shops are there! If I am going to be offed, it should be by something that goes somewhere very smart. God forbid I get offed by the 106, which goes through Hackney (ewwww!!), down through Bethnal Green (double ewwww!!!) and stops in Whitechapel (yuck: full body heave at the thought).

Now THAT would be really embarrassing!!!

Tuesday 8 May 2012

Stop the world, I want to get on!

We actually have some sun today. Amazing. So |I can go out and not worry too much about falling over. And what have I been doing in the interim? Precious little, I have to admit.

 I did manage to go to the hairdresser's for some major overhaul- and I can truly say that I look much better. It was an experience, having to negotiate chairs, people, and sinks without crashing into anyone. But, I did it. Now I am ready for bigger and better things. 
I had a few bad days. I don't have as many bad ones, and I don't have them as often as I did-so I know I am improving. It is just taking so much longer than I expected.

We are now at 90 weeks-and still counting. I have less than three months to get to the two year mark. I really, really want to be a lot better by then. I don't want to seem obsessive. I just want to get better.

Is there anything wrong with wanting to live as normal a life as possible?

Friday 4 May 2012

Chips and Dips, and Peacocks Rock!

I like to check out t-shirt shops. I used to have this great shop on Fifth Avenue, and all my classmates and I would go into the city and stop there to see what was new; we always came out with some shirt with a great saying (and sometimes, not so great). I went back years later-but, sadly, the shop was gone. Tempus fugit, I know-but I still like to go and look when I see a place that will make your shirt to order.

One of the things I found in storage was a t-shirt that said: A peacock that sits on its' tailfeathers is just another turkey. I thought that was so good, I bought it in three colors (now you know why I have a huge storage unit filled with "stuff". My life is there-well, my previous life!!). So, of course, I brought it home with me. It's almost as good as "Beam me up Scotty". But there are other ones that are good, too-one day I'll find them. I'll also find those six woks.

It hasn't been an easy week; every day was a hospital day, and I am (happily) nearing the end of all the assessments, occupational therapists, and support people. Slowly, everyone is leaving-which is good, because it means I don't need such a huge amount of care anymore. The physiotherapist at the Royal London has discharged me after the requisite four visits-which didn't do a whole lot of good, so I am very glad for the help at the Neurology Hospital. The general consensus is that I will not get any better than I am now, so I will have to learn to live with things as they are. As long as I can walk without falling over -or falling in front of a bus - their job is over.

Their opinions are their opinions; I believe differently. We'll see in the end who is right. I'm not giving up just because they say so!

I have to go see the dietician-and I know she will say that Kettle Chips don't constitute a proper diet. Oh, well-I did try to convince her last time that they are one of the food groups (especially with my friend Nancy's wonderful dips!), but she wasn't having it. So I have to sort out my nutrition, and then I will be down one more person. I get the old "have to eat properly, drink lots of fluids (no, coffee doesn't really count), get plenty of sleep (only if I kill the noisy neighbour from Hell who lives upstairs), don't get stressed (you must be joking!!!), and so on.

I can do very well if I find a place where the temperature is a constant 20C (68F), it only rains at night (while I'm asleep), and there are very few people-and no idiots with prams.

The more people I see, the more I like animals. In fact, I am beginning to prefer dogs to people-and not without very good reason!

I'm certainly getting grumpy in my dotage. That is what gentamicin toxicity does to me!! Either that-or it's the constant exposure to idiots!!