Mega Update Of Progress

9 months ago I got rid of my old spine Dr who wanted me to have risky procedures and take more pain meds and I started attending a physiotherapy gym 2-3 times a week to see if I could increase some stability in my joints.

When I started at the gym even walking was extremely painful, my arms could do 5lb reps for less than a minute before muscle spasms meant that I would loose control of my arms, my legs couldn't do much better at 20lbs. Everywhere I went so did my wheelchair.

Going to this gym 2-3 times a week was a massive strain on time, I still had to work and work doesn't stop because you have several hours a week you need to dedicate to therapy. The first few months were hell, it was painful. very painful, I would get back home after a session and not want to do anything but get in a bath and go to sleep. There was massive a increase in muscle spasms that made it almost impossible for me to sleep at night and mentally I was drained.

I went to see my PCM / GP because I was getting extremely depressed, as I am not someone who typically suffers from depression I knew it was just from months of poor sleep caused by the muscles. My Dr gave me an anti-spasm drug used for MS that I could take at night before bed. Now instead of being woken up hourly I often get 4 hours of sleep before a spasm wakes me and just being able to sleep again gave me the drive to dive back in to things I had shut out of my life.

Now I want to take a moment to thank some people. I am a very fortunate person to have a strong group of friends around me in Paintball, friends who don't let me not do something because I feel I won't be as good as I should be and I really want to thank them from the bottom of my heart for never letting me say no. A few of you are in the pic above but those who aren't, you know who you are. Without you guys I would have given up a long time ago.

Now this isn't a happily ever after post but it's one of real progress that 9 months ago I didn't believe was possible. Today I leg pressed 90lbs (reps over 3 mins), my arms managed 48lbs (reps over 3 mins). This month I have gone to the grocery store twice, leaving my wheelchair in the car. While I was in agony by the time I returned to my car it was still a massive improvement and using a shopping cart to help me walk I didn't fall!

So whats next? Well I keep going, keep upping the weights to try and get my muscles around the ligaments and joints that are causing the issues stronger. I hope that my close group of friends are still stood by me pushing me and motivating me to continue. I just got cleared to use the assisted sit up machine at the gym which means I can start to get rid of some of the extra weight I have gained and get toned again which will in turn bring my confidence in my body back up. I will still need the chair when lots of standing / walking is involved as my issues with my lower spine will never go away, but, every goal I hit at the gym, every lb i add to the weights is a sign of an improvement in the quality of life I have in both the short and long-term.

So for now I keep on doing what I am doing and try to increase muscle mass as much as humanly possible in the hope that the stability given by them slows down the spasms.

Update on Broken Body

So I know a bunch of you have been asking for health updates so here goes.

I have been sent to a new spine clinic, it's set up as kind of a spinal chord injury rehab but they have some fancy smanzy torture devices. With the 2 hour examination they give you before they do anything they found some more problems. Most people when you stand up your legs stop when they are straight, mine keep going. On top of that when i bend my legs they fold inward so the ligaments don't support the joints which are already eroding and now the muscles are trying to do the work of all 3... this has caused insane weakness in my legs which is causing me to fall often and I almost need to lift my legs with my arms - I see the strength weakening on a weekly basis. Because of them being so flexible in ways they shouldn't be I have to get fitted for some leg braces. I went in today but they decided normal ones just wouldn't work so I have to go to a prosthetic place and get some custom ones as these will be for long term use. Oh an my legs aren't aligned either, they be wonky as hell.

These braces don't mean I am wheelchair free, they simply will provide me with a bit of extra support while I am walking around the house and hopefully prevent me falling.

Ok so that's the legs, now the top part of the body. Spine is eroding around the lower Facets, nothing can really be done about this, but around that I also have scoliosis so my spines pretty bent and curved in a way that's affected my entire posture - and straightening into what it should be is a painful process. Right now long-term this seems to be my life. These guys are great and hope that I can at least increase my muscle tone but have made it very clear that the problems I have can't be fixed beyond that so the braces / cane / wheelchair are long-term plans and look to be permanent.

Right now pain is a daily issue but I keep myself busy and distracted. The biggest thing is the muscle spasms, they come out of nowhere and can be so incredibly painful it is hard to keep a straight face in meetings. The hope is that with this special work out equipment they have I can strengthen my muscles to reduce the spasms.... which would be amazing because for the last 8 months I have been in a constant state of exhaustion and I know because of it I have neglected many of you. So thanks for being patient guys and enjoy my badly written essay.

So if you are out of date the list so far:

Osteomylacia, Rheumatoid Arthritis, Facet Erosion, Ligaments too long, Scoliosis

#RoboKitty2015

On a good note because of my insanity I have decided in a few weeks to come back to YouTube on my own personal channel, coming out of the 'cripple closet' so to speak and maybe share my journey into the world of limited mobility.

FYI: No pity please, I can still kick all your asses. #fightmeatpax

A Bumpy Ride

Slowly Coming To Terms With RA

It has been an interesting few weeks for me, learning to somewhat adapt to a new way of living and getting my freedom back, even if slightly more confined than before. I am laughing on the inside because as I write this I am in the bath, sounds insane I know but my bath is my happy place. In the warm water my muscles and joints hurt so much less than out of it, so much so that for around 2 hours a day I work / write while in it :)

Having had joint problems for years now finding out that I had Rheumatoid Arthritis gave me not only a sense of 'fear' but also one of relief. For years Doctors had ignored my plight for help almost shoeing me away under the premise it was probably Osteoporosis due to the amount of Prednisone I had been on throughout my life but deep down I knew it wasn't Osteoporosis. Even though the swelling was often visible, when Doctors tell you 'it's nothing and not to worry' you start to think that maybe what you are seeing and feeling is in your head. 

Right now I am just so thankful that finally I have a Dr who actually saw my pain and frustration and actually took the time to examine my legs (yes no Dr had actually done that up until this point) and run the tests needed to find out what was wrong and not only that but work with you to get the best results within your boundaries. You see growing up 'sick' I was always scared of getting into the routine of being ill, you see it all the time - people are put on medications that make them feel crap and and they become unable to be productive and have a good quality of life and that feeling not only becomes routine but also in a strange way it becomes habit  I have been on enough treatments to know that sometimes just because it works doesn't mean it's right for you. When you feel awful all the time, when you wake up in the morning you start to 'expect' to feel awful and then of course you do and it is because of that fear I really think long and hard about taking pain medication before I do.

I personally am REALLY sensitive to pain meds, they may take away some of the pain but they also make me feel tired, nauseous and unable to focus or even hold a conversation properly. It's not just one type - it is most. With the majority of pain meds that work I can't function mentally and for me keeping my mental state sharp and focused is more valuable than keeping my body pain free - especially from a psychological point of view as when I am unable to do things like work or keep myself busy I get depressed and once you do that, it is down hill from there. Now don't get me wrong, I still take them sometimes, especially if I am too sore to sleep, but I very seldom take them during day time if I can at all avoid it. 

                                   

So, how am I handling the RA? Well I could be doing better. It's very daunting having an auto immune disease especially one as disruptive to daily life as this and perhaps sadly and most shockingly of all one with no cure and let me tell you now, it's not an easy thing to handle mentally or emotionally being told something inside you is broken and can't be fixed. Luckily I am fortunate enough to be surrounded by a great group of people who have no idea how thankful I am for them just being around. Friends have really stepped up to help, even if it is just picking something up off the floor i dropped or removing my socks, sounds silly but it is those small gestures that mean the most to me. I know this disease doesn't just affect me, I see it affect those around me, I am not blind, I can see that worry in their eyes.

I am determined to find away to continue to live my life as normal as possible in the hope that one day I can run around like a loon again. I am still waiting on a Rheumatologist appointment hoping that the treatment they give works better than the last 3 I have tried. For now I am taking it one limp at a time (you see what I did there? I am funny). I have a wheelchair to help me get around that I use mostly outside the house and am looking forward to Paintball next week. I purchased a golf cart to help me get on the field and although I won't be able to run around the bushes being a Ninja like I used to I will still be on the field surrounded by people I love and that's all that really matters.

In need of fixing....

Fear.

For the first time in my life I am scared. I have had many health issues throughout my life, this crap is far from new to me. I spent more of my childhood in hospital than out of it, I have been told things that a normal person would fear, but I never have. 

I grew up knowing that not all was right with my body, avoiding infections and fighting them became normal and if I got sick, I knew the routine. In routine lies safety and some control, you can spot when infection is coming, or you can feel a cold coming on so you act accordingly and most of the time you just go through the normal. Antibiotics, Prednisolone, few extra pills thrown in for good measure, grab lap top and work from bed for a while.

Over the last ten or so years, joint pain has been a part of life. Knees hurt but I just walked through it. Having been on Prednisolone for most of my life I knew that joint problems were part of the problems it causes, most people get osteoporosis so have to be a bit careful but all this I was aware of and accepted. However the last few years the pain has been coming more and more frequently to levels that prevented me from doing things, sometimes even small things like going to the grocery store. The pain was becoming horrific and I knew that if I took pain killers while I was working, I wouldn't be able to concentrate enough to work so I didn't. Growing up around people with health problems I am all too aware of the dangers of getting into the routine of 'being ill' and because of that I choose to keep busy and bury my head in work as much as I could.

I had pretty much stopped paintballing 2-3 years ago because of my joints, I never really admitted that to anyone and just made excuses about work but I guess this is me coming out and letting you guys know I wasn't just lying to you, I was lying to myself.

When the ATF raided us to search for explosives or whatever they were supposed to be doing, I was removed from the house and sat outside in near freezing weather for about 5 hours. I explained to them that it hurt my joints but I guess for their safety I wasn't allowed inside. I wasn't under arrest and I was free to go, but being home alone and unable to drive along the fact they had taken my phones and cut my land line prevented me from being anywhere else. Needless to say a few hours in I was in agony, and while they were very polite people that action left me in incredible pain and a half crippled state for almost a week after. This was my wake up call, this joint pain was NOT normal, not even for osteoporosis and I had to do something about it.

                                              

Now, I had spoken to Drs in the past but typically the reaction was the same 'Oh sweetie you have been on so many steroids what do you expect, it's probably just osteoporosis, you are lucky you are not in a wheelchair'. Not once was help or support offered, they just throw pain meds at you and walk you out the door. This time I was prepared, luckily for me my new Dr actually examined my legs and saw that something wasn't quite right. After enough blood to feed a small vampire family for a month or two was taken the tests came back within 5 days. Having always had immune issues the Dr figured it was probably Lupus (This had been suspected from previous Drs always, but through fear I didn't want to know, so never got tested) and after having read up on Lupus I had kind of got my brain to accept it, the treatment looked rough but I had done 'rough' before and it seemed like it wouldn't totally change my day to day life, so in a way I was ok with that, I just wanted answers.

5 days later the test results were back, Lupus was negative, I laughed and sighed as she tapped me on my arm. 'Kitty you have advanced Rheumatoid Arthritis and we need to get you to a specialist ASAP', I said ok and left. Surely only old people get RA right? Nope...... apparently not, I am only 31. I know what RA is and I know what it does and honestly I am scared, really damn scared.