A lot has happened

Since September last year, my life has been a whirlwind of things going on. Not least, losing a beloved family member on Christmas day, for my own Mother to then die very suddenly and unexpectedly on January 10th 2012, a mere month away from the second anniversary of my Father's death - which was yesterday, February 4th.
In the meantime, my arthritis has been fairly placid, until recently. I'm struggling very badly with my hands at the moment, more specifically the joints at the very ends of my fingers on both hands, although my right is considerably worse than my left.

It means even doing this small amount of typing is painful beyond belief and I've had to pass the task over to my partner - Impossible to explain to people though. But before this, I was already cataloguing how my did my arthritis hit with a flare? Was there a definite pattern that perhaps I could begin to see, and therefore try and do things to help in the future.

All I can say with certainty is that stress and lack of sleep are absolutes when it comes to struggling with pain management, as the last month has clearly shown me. I knew that already, and somehow I've had to keep going because frankly, no-one else can do the legal paperwork and notifications that my sister and I have had to do - not just on my Mother's estate, but my Aunt's as well (the death on Christmas day). It does become a catch 22 situation with pain, but fortunately because I'd already got a lot of different methods in place to help long before today, it did help. No, it didn't stop it from occurring, but at least I was able to minimise the impact compared to years ago before I knew what I was facing.

This sort of brings me to my next item. My flare ups or new events. I tend to place a flare up in a separate category to a more specific event, like my joints in the tops of my fingers. The reason being a flare up tends to happen on a regular basis, and tends to follow a very specific pattern. I get area's of heat and swelling around local joints, that I find I then need to place ice packs on to help. Sometimes pain levels are worse than others, but rarely does a flare up last more than a few hours. It does usually happen at least once a day, more if, as mentioned, I'm tired or stressed. Weather patterns also affect flare ups. I know some will say a flare up a day is still too much, but when I tell you I was living almost constantly in a flare, with virtually no respite from it, then this is a vast improvement.

New or other events I classify that are different to a general day to day flare. As I've said, I'm struggling very badly at the moment with my hands. I've noticed when these sort of events occur, there is a very definite pattern as well - for me at least.
It'll start off with a very sharp pain right down in the affected joint. I can only liken it to have a red hot needle or sharp knife being driven in to the joint, and twisted around. It's a sharp, relentless pain. This can stay for several weeks (as is the case now for me) and slowly it'll begin to dissipate, and be replaced with a much duller throbbing pain, and a much greater stiffness around the joints that have been affected. I am sort of hovering around that area now, whereby the sharp pain is still there, but on occasion it's been replaced by the duller throbbing pain and stiffness.

This currently new event for me has made using a pen near enough impossible - and I've had to give my food to my partner to literally cut up for me, because I can't put any real pressure on the fingers to push down on either a knife or fork. I can only hope it'll ease soon.
In the meantime, my partner is pretty much doing all my typing and writing at the moment - just as well with all the paperwork we've had to fill out with the deaths that have occurred.

It's never easy to have to relinquish control to anyone, but right now, my body isn't giving me a lot of choice in the matter. I can only hope it improves sooner rather than later.

Been a little while

Well, its been a little while since I posted here.
Since the last post, I've seen a new specialist, who was good. I'm now also on a slightly bigger dose of MTX to see if that helps bring down the inflammation more than it is. Basically, doing what the previous specialist was looking at before we moved out of the area.
Other than that, its been a fairly typical time. You know the one, pain always there, just depends on how much each day.
I did see a comment by someone the other day that I thought made sense. It was the usual debate as to how misleading the name of this disease is, that as soon as someone hears the word arthritis, they have no idea what it means.
Someone suggested it should be called Rheumatoid Autoimmune disease.
As simple as that. And you know what, I agree. It is what we have, it sums it up properly.
I doubt it will happen though. God it's bad enough to get some in the medical profession to understand this disease, let alone rename it! I live in hope though.

&*^%$£%

Just when I thought I was getting some respite from the arthritis, as usual, its come back to bite me squarely in the arse! Its that situation where its easier to work out where it doesn't hurt, compared to where it does! And so for now, just about everything is sore...... and has been for several days. This means as well as the slow release tramadol, I've had to hit the regular tramadol. Okay - except it makes me sleepy as hell. To be truthful, the slow release does, but at least I can function on some level. So I've spent a few days just trying to clear the fog in the brain, and that isn't without the fatigue this damn disease causes.


No, I'm not having a very good time of it lately. I know it'll pass, it always does but in the meantime I'm one crabby bunny!

Let me rephrase this.....

Let me rephrase this........


So I say to you:
Weekly I have to take medication that is used in some cancer treatments.
What is your immediate reaction? 


Now, lets say it a completely different way.

I say to you, I have arthritis. What is your immediate reaction?

I bet it is nowhere near the same level as the first comment.

So,  what has changed?


In reality, nothing has changed. I have a form of inflammatory arthritis so severe, that one method of weekly treatment is also used in some leukaemia treatments. It will remain that way until either my body reacts to the toxic levels it produces, or it stops working. This usually happens, most patients do begin to suffer either with the treatments becoming ineffective over time, or extreme reactions to the medicines themselves because they are so strong and we have to hope we can swap to yet more toxic medicines.
And yet, it isn't something most people even realize, but they can immediately sympathize with cancer treatments.


We have to educate this. Its one reason I'm writing this all down. If just one person reads it and they change their perceptions, I'll be happy.

So, its that time of the month

So, it's that time of the month.......


Now, if you're in the slightest bit offended or squeamish about certain female things, don't read any further. Not that I'm going to go in to any real details, but I know some people don't like discussing "women problems".


The reason for this today is simple. I've had excellent specialists in the time since my diagnosis, and yet, one thing that I know has been discussed amongst the woman with RA *or general inflammatory arthritis* is when your period is due. I didn't notice it to begin with, but I suddenly became aware that just before I was due to menstruate, my arthritis some days before (it can vary between 2 and 5 days ahead) goes on the rampage, and ramps itself right up. I'm not alone with this, and yet when I've mentioned it to my specialist, they don't appear to find it important or relevant. I've also not read anything in any literature about this being a possible problem or symptom - although there might well be some out there, I've just never seen it.


I find this strange, simply because if I had known about it before hand, I could ensure I took precautions to help lessen its impact when it does occur. I can set my watch by my cycle, so I can also now predict when I'm going to get hit by the arthritis, and this helps me enormously, because I can sit and plan in advance. Not something you can often say with this disease. But now, I know when to try and rest, and not have too much marked in on the calendar. It doesn't mean I stop life altogether, but I can plan around what I know is coming, and therefore actually get more from those days than if I didn't have warning. So I have to ask why isn't this something that is studied more by the specialists? Its not just a co-incidence a lot of women are like me, and yet still, unless we discuss it among ourselves online, we most likely would never have made the connection. This also seems to show that hormonal changes can have a massive impact on how the disease manifests itself. 


So come on medical profession, please begin to actually listen to your patients and look in to this more, or at the very least, give warning in literature to people that there is a high chance this could happen to them if a woman. 

Pain in the..... everywhere?

Pain in the....... everywhere?


If you have RA, you know where I am going with this one. The constant pain we live in day to day. You kinda get used to the background pain that never leaves your body. At least, I have..... but its always there, always nagging away at you, never quite letting you forget.
Pain in itself is something I've always been pretty good at dealing with. I know that over the years, because I've tended to have pretty physical jobs, which regularly meant I got hurt - I've also had expressed disbelieve from the doctors or nurses when I've finally given in and gone for treatment. I'm lucky like that I guess, unlike J, my civil partner who can and has passed out when having injections because it hurt. Even just the other day, I was seeing my doctor to organize some steroid injections for my shoulders, and she remarked that, because of all my other blood tests etc, I was going to be seeing a lot of needles over the coming weeks. I shrugged it off - I have no qualms about that sort of thing. 


Yet, I struggle with this damn RA pain. I use a specific proven meditation technique (based on Buddhist mediation) and it helps, but even I have to succumb and take slow release tramadol. This helps, but even so, I occasionally take a hiatus from it, for a number of reasons. Not least, I'm already throwing a lot of toxic chemicals in to my system, and I like to give it a chance to avoid one more as long as I can. It also means I don't become to reliant on the drug, and finally, I don't become immune to the dosage and it begins to lose effect. But, by doing that, I'm allowing even the base level pain to come and bite me well and truly on the ass. But that's okay, my decision, I'll deal with it.


The problem arises when I have not just a flare up (where joints swell up and become painful), but as the redness and swelling subside, it takes days for my body to get back in kilter. Worse still if I get a succession of flare ups over hours, not just days. This takes pain on to a whole new level, and quite frankly it is simply impossible to describe. Take a baseball bat and get someone to swing at every joint you can think of. I don't just mean hands and feet here in general, but I'm posting pictures to show just how many joints these have. Now, put the pain in just about each and every joint you see on the pictures - and its in both hands and feet remember, not just one, although occasionally if you're lucky, it might just be one sided.
This is as close as I can describe it. It is truly excruciating, and there is no relief, just pain. It masks everything else you are feeling. You hurt sitting, standing, lying down. Everything feels amplified. 


This is what most people with RA deal with, day in, day out. We might not show it, in fact, listening to other RA patients, we all seem to hide it as much as possible, including our own doctors, but its there. Always there.
So, if you know someone who has RA and seems quiet and withdrawn, don't take it personally, its most likely they are struggling. Whether in pain or some other part of this multifaceted disease. 

How many more times!

How many more times!


Now, I'm a pretty patient person for the most part. It takes a fair bit for someone to push my buttons - I have my father to thank for that, since I take after him, and not my mother, who my sister is like.

But - I find it so difficult to not get mad when someone asks about my disease, and I say "I have rheumatoid arthritis." to then get the reply, "Oh, I've got arthritis in...." and they proceed to talk about osteoarthritis they have.
Don't get me wrong, I know osteoarthritis can be debilitating in its own way and painful. Believe me, I also have osteoarthritis - so I know how that can be.

But you try and explain that your disease is nothing like, and you can see the shutters rolling down across the eyes before you've even got as far as "But......." 
Now, for those who don't like swearing, stop reading now.........


For fucks sake - at least have the decency to listen! It isn't a fucking great competition to see who has the worse disease. Believe me when I say I'd give mine away in a heartbeat.
I see when someone has MS, Parkinsons, Huntingtons, Cancer and other diseases to name just a few. People recognize and understand the difficulties often faced by someone with those disorders. And yet, RA remains such a mystery to most. I've had personal experience with friends and family who had all of the above - My own family in particular has faced Parkinsons on three occasions. One grandmother, my uncle, and his brother - my father - who died last year from complications partly due to his Parkinsons.

Personally, I would rather RA was given a name that completely removed its association with arthritis, at least for the public conception. Its first and foremost an auto immune disease. It means my body is, for whatever reason, attacking itself. This isn't just limited to joints.

Perhaps the only way we can fully educate is to get rid of the misconception, and the first step would be, at least I believe, to remove a name that automatically gives that. No, I have no real idea what to call it, but I'm sure there would be enough of us to throw some ideas in to the ring, brain storm it, and come out with something far better than we have now.