Hi, my name is Robyn but my friends call me Cutsnake. They started calling me that when I was a teenager as I was ‘mad as a cut snake’… However, things have changed alot since those crazy days.
When I was around 20 I was diagnosed with LPHS after having spent the previous 6 months trying to find a Urologist or Neurologist who could tell me what on earth was going on with me. I was passing huge amounts of blood in my urine (which was so full of blood that it looked like red wine), and in so much pain that all I did was roll around the bed crying and calling out in pain.
FINALLY, I found a neurologist who diagnosed me, and although he advised me that it was unknown at that time as to what actually causes LPHS, he did tell me that there had been some data which indicated that a reasonably high percentage of the very few people worldwide who have this disease, had at some time during their childhood been on various types of antibiotics (IV) whilst being in hospital. Sure enough, this jived with my history….
When I was 6 yrs of age, I was burnt in a fire and spent 4 months or thereabouts in hospital, having a particular antibiotic running through my drip. This antibiotic has now been shown to cause kidney and liver problems in children, years later, and is therefore no longer recommended for use in children (and when used in adults, only if regular blood tests are undertaken to test for toxicity – particularly given the antibiotic itself can cause kidney and liver failure). The antibiotic I speak of is called Gentamicin.
Anyway, the crux of the matter is that I have now been living with LPHS for coming up 18 years. My life (or existence)is pretty miserable. The pain itself is the debilitating part of the whole thing. Of course I’ve been on huge amounts of opiates for the duration, and I guess I am now what you’d call an addict. No, I’d be really really crook if I were to stop taking my painkillers abruptly, but they no longer narcotize me (I don’t go on the nod or anything like that) – but rather, just help to control the pain.
LPHS has destroyed my life in a lot of ways, although probably because I let it do so. It is very easy to become depressed when you have a chronic illness or pain problem. Although my GP and kidney specialists all tried to get me to deal with my depression, I didn’t do anything about it myself until I was just about ready to ‘end it all’.
Obviously, my partner of 15 odd years got sick of seeing me in pain all of the time, and got sick of never being able to just go and have a night out without having to worry about whether I’d be too sick on the night to be able to go, and so he just ended up packing his bags and leaving me with our daughter who was only 6 at the time. She’s 9 now, and the light of my life. Without her, I don’t know what I would have done.
But, by him walking out, it forced me to have to deal with my depression, because I knew if I didn’t, I’d be consumed by it and then there would be nobody to really take care of my daughter.
I guess I’ll now be on antidepressants for the rest of my life, and although that doesn’t sit well with me, I guess its better than the alternative.
We are learning that although I’m in pain and really unwell most of the time, that we can do it, and we can be happy while we are. If I hadn’t had my daughter that I had to care for, I think I’d have just given up and spent ALL of my time in bed or on the couch, rather than just the significant amount of time that I was.
No, I’d love to be free of LPHS, but I’m guessing that’s just a fantasy and I’ll just have to live with it for the rest of my life. Yes, I am sick of being sick all of the time, but what else am I going to do? It’s pretty much out of my hands.
What I can say though is that despite how scary it all was at the beginning, once you actually come to terms with whats going on with your body, and you learn to work your life around your disease, you can cope, you can thrive. The trick is NOT LETTING YOUR DISEASE BECOME THE FOCUS OF YOUR LIFE. If somebody had told me 5 years ago that in a handful of years my lifelong partner would have hit the road and left me with a young daughter to care for all on my own, whilst I was in extreme bad health, I’d have laughed in their face. Well, now I’m doing it, and despite it all, I’m doing okay.
My neurologist and pain specialist are looking at putting an intrathecal morphine pump into me within the next 12 months, and I’ve got to admit, that although I’m really scared about having the surgery (and about something going wrong whilst I’m on the table), I’m actually looking forward to it because they tell me that it will significantly reduce the amount of morphine that I’m having to take because the morphine will be going straight to the site that is causing the pain (the nerves around the kidney), and that I will be receiving the best possible control of the pain. The only drawback is that I’ll have to keep going back to the hospital and getting the reservoir filled up with more morphine every couple of months. I guess that’s a pretty small drawback in the grand scheme of things.
All I can say is that I hope the rest of you people out there in cyberspace who are going through the dramas of living with LPHS or worse still, trying to find a doctor who can diagnose you if LPHS is your problem, that you actually find a doctor who if they don’t know whats going on with you, send you to somebody who can sort you out and get you onto a regime or program that can help. Although I’ve got great specialists on my ‘team’ now, I had to see a whole lot of quacks before I found them.
I hope your not having a really bad day with your pain….believe it or not, today is probably the best I’ve been in the past 3 months. Anyway, I’ll sign off. I hope this ‘my story’ has helped somebody out there who is going through this.
By the way, if you want to reply to my email, feel free. My email address is [email protected].
Catch you later.