Tuesday is my appointment day. I have my questions ready.
Yes, some of this is my fault, for not asking the right questions, for not figuring out the right eating patterns with steroids.
At the same time, I need help. I need more information, I need my balance back, I need not to feel like I need 16 hours of sleep a day. I would love to walk more if I had my energy back. I walk at work, but it could be more. So tired.
So tired - in more ways than one. I could use emotional help too, but with all I already pay for the RA, I fear it is out of the question.
Double edged sword, anyone?
RAmbling Girl
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Sunday, August 10, 2014
Sunday, July 27, 2014
I've decided
To ask about discontinuing the steroids and demand an evaluation of my side effects.
The excuse I was given for the steroids was to mitigate the pain away long enough to give the newer drugs I am on time to work.
The steroids have messed with me so bad both physically and stigma wise, that I have gained all of the weight back that I have lost. I have tried repeatedly to wrap my mind around proper eating patterns with this drug, but nothing is working. I'd rather have the pain back (if there is any to come back) and let the other RA drugs stand on their own merit.
Meanwhile, another thing that is probably not helping my eating habits any - my near constant diarrhea. It's happening 90% of the time now, and it leaves me feeling weak. I NEVER had it this bad before I started this last round of drugs.
My appointment is in the 2nd week of August. I shall do my best to keep it together.
The fight continues,
RAmbling Girl
The excuse I was given for the steroids was to mitigate the pain away long enough to give the newer drugs I am on time to work.
The steroids have messed with me so bad both physically and stigma wise, that I have gained all of the weight back that I have lost. I have tried repeatedly to wrap my mind around proper eating patterns with this drug, but nothing is working. I'd rather have the pain back (if there is any to come back) and let the other RA drugs stand on their own merit.
Meanwhile, another thing that is probably not helping my eating habits any - my near constant diarrhea. It's happening 90% of the time now, and it leaves me feeling weak. I NEVER had it this bad before I started this last round of drugs.
My appointment is in the 2nd week of August. I shall do my best to keep it together.
The fight continues,
RAmbling Girl
Tuesday, July 22, 2014
Meh
There is a picture on my desk at my job. It is of me at a murder mystery dinner theatre show. It is a time where I was happy.
It has been a long time since I blogged here. In short, the reason why is because of illness, day job, switching drugs, and idiotic online pharmacies who wouldn’t know their way around paperwork if it came up and bit them.
Let me make something clear: I am no warrior. I am just a woman who is dealing with rheumatoid disease, the pain, the meds, and the side effects from the meds.
Ah yes, the lovely side effects: weight gain, recurring illness, breathing issues, diarrhea, loss of energy.
It makes finding more to live for in life kind of a drag, really.
Don’t get me wrong, I went into this thinking I would find a regiment that would keep the RA under control. It seems easy enough – I mean thanks to an eye doctor I have a regiment that is so far keeping my eyes in check and hopefully away from recurring eye infections.
It has been a little over two years now, and not much progress. The new drug I recently started I have not even been monitored on yet due to illness, and I have been on this drug now for four months.
This post needed to come out, because it was hurting me keeping it in.
I’ll keep on of course, because what else is there? Meanwhile I think I will go have a good cry and break something, because it has been a long time since I have been happy. Hope? Don’t even get me started.
Meh,
RAmbling Girl
It has been a long time since I blogged here. In short, the reason why is because of illness, day job, switching drugs, and idiotic online pharmacies who wouldn’t know their way around paperwork if it came up and bit them.
Let me make something clear: I am no warrior. I am just a woman who is dealing with rheumatoid disease, the pain, the meds, and the side effects from the meds.
Ah yes, the lovely side effects: weight gain, recurring illness, breathing issues, diarrhea, loss of energy.
It makes finding more to live for in life kind of a drag, really.
Don’t get me wrong, I went into this thinking I would find a regiment that would keep the RA under control. It seems easy enough – I mean thanks to an eye doctor I have a regiment that is so far keeping my eyes in check and hopefully away from recurring eye infections.
It has been a little over two years now, and not much progress. The new drug I recently started I have not even been monitored on yet due to illness, and I have been on this drug now for four months.
This post needed to come out, because it was hurting me keeping it in.
I’ll keep on of course, because what else is there? Meanwhile I think I will go have a good cry and break something, because it has been a long time since I have been happy. Hope? Don’t even get me started.
Meh,
RAmbling Girl
Friday, January 24, 2014
What Rheumatoid Disease/arthritis means to me
In honor of the upcoming Rheumatoid Awareness day (On Groundhog day no less, please check out rheum4us.org for more details), I thought I would elaborate on this elusive foe that basically sidelined me for near the end of last year (I was sick in October and November, which led into some very busy holidays for me which meant little time writing - that's why things dropped off here.)
What Rheumatoid Disease/arthritis means to me
So, I have officially been on this journey for a year now. In short: it sucks.
Thank you for coming by and have a nice day.
Um, what? You want an explanation? Oh all right, I'll explain.
Imagine entering a carnival.
You are intent on having a good time and experiencing all there is to experience. Suddenly one of the carnival workers comes up behind you, forcibly routing you to a particular ride. You have no choice in the matter, so you board the ride.
It is the most miserable ride you've ever experienced - you're sick, feeling topsy-turvy, and you would do anything to get off the ride, but when that current ride ends and you step back on good ol' terra firma, yet another carnival worker wants to route you to another ride, this one twice as bad as the first. Reluctantly you get prodded along, dreading what is coming up next.
Okay, the above may be an oversimplification but for the basics of it, it is true. Your body's defenses (aka immune system) are doing the unthinkable - attacking your joints and your organs. I mean the immune system is supposed to be the hero of this picture, keeping you from major sickness and all, but in a surprise plot twist the immune system is the villain of the piece, leaving you with inflamed and painful joints. There is currently no cure for it, and as far as treatment is concerned it is far from one size fits all.
There are numerous drugs out there meant to treat this disease, each with their unique way of tackling it. Most tackle it the hard way by suppressing your immune system, which means that the whole of the germing world of germs is ready to come at you.
My track record? I have been on three different combinations of RA drugs so far. Some have held things at bay enough for me to function at a basic level, but none of them have been effective enough to keep my RA levels down to my or my rheumatologist's satisfaction. I'm currently awaiting insurance approval to see what drug I am going to try next.
I'm now to the part of the carnival where the games are and am standing in front of the wheel of fortune. Its spinning and spinning and I am waiting for the payoff. The waiting is the hard part, really. Of course I am doing what I can in the meanwhile, keeping my diet low key since the steroids I am currently on are throwing my blood sugar to crazy levels, along with walking whenever I can.
Those crazy carnival workers are behind me though, ready to drag me back on their rides.
It has been a tiring journey and the emotions have taken a roller coaster ride. Some days there doesn't seem to be any hope and I feel doomed to pain, sickness, and inflammation. It is then that I remember that I have a good rheumatologist working for me and answering my questions to keep me in the know. I am also still quite mobile, even if there are some days I need to walk with a cane.
Okay, so the journey doesn't always suck. Life goes on and I continue the fight - THAT'S what Rheumatoid Disease/arthritis means to me.
Some revelation, huh?
Till next time,
RAmbling Girl
Edited to add: RA Warrior is organizing a blog carnival to show the many faces and aspects of Rheumatoid Disease and the effort to bring forth awareness. If my experiences can help people understand, then I am more than happy to share them.
http://rawarrior.com/what-would-rheumatoid-awareness-mean-to-you/
What Rheumatoid Disease/arthritis means to me
So, I have officially been on this journey for a year now. In short: it sucks.
Thank you for coming by and have a nice day.
Um, what? You want an explanation? Oh all right, I'll explain.
Imagine entering a carnival.
You are intent on having a good time and experiencing all there is to experience. Suddenly one of the carnival workers comes up behind you, forcibly routing you to a particular ride. You have no choice in the matter, so you board the ride.
It is the most miserable ride you've ever experienced - you're sick, feeling topsy-turvy, and you would do anything to get off the ride, but when that current ride ends and you step back on good ol' terra firma, yet another carnival worker wants to route you to another ride, this one twice as bad as the first. Reluctantly you get prodded along, dreading what is coming up next.
Okay, the above may be an oversimplification but for the basics of it, it is true. Your body's defenses (aka immune system) are doing the unthinkable - attacking your joints and your organs. I mean the immune system is supposed to be the hero of this picture, keeping you from major sickness and all, but in a surprise plot twist the immune system is the villain of the piece, leaving you with inflamed and painful joints. There is currently no cure for it, and as far as treatment is concerned it is far from one size fits all.
There are numerous drugs out there meant to treat this disease, each with their unique way of tackling it. Most tackle it the hard way by suppressing your immune system, which means that the whole of the germing world of germs is ready to come at you.
My track record? I have been on three different combinations of RA drugs so far. Some have held things at bay enough for me to function at a basic level, but none of them have been effective enough to keep my RA levels down to my or my rheumatologist's satisfaction. I'm currently awaiting insurance approval to see what drug I am going to try next.
I'm now to the part of the carnival where the games are and am standing in front of the wheel of fortune. Its spinning and spinning and I am waiting for the payoff. The waiting is the hard part, really. Of course I am doing what I can in the meanwhile, keeping my diet low key since the steroids I am currently on are throwing my blood sugar to crazy levels, along with walking whenever I can.
Those crazy carnival workers are behind me though, ready to drag me back on their rides.
It has been a tiring journey and the emotions have taken a roller coaster ride. Some days there doesn't seem to be any hope and I feel doomed to pain, sickness, and inflammation. It is then that I remember that I have a good rheumatologist working for me and answering my questions to keep me in the know. I am also still quite mobile, even if there are some days I need to walk with a cane.
Okay, so the journey doesn't always suck. Life goes on and I continue the fight - THAT'S what Rheumatoid Disease/arthritis means to me.
Some revelation, huh?
Till next time,
RAmbling Girl
Edited to add: RA Warrior is organizing a blog carnival to show the many faces and aspects of Rheumatoid Disease and the effort to bring forth awareness. If my experiences can help people understand, then I am more than happy to share them.
http://rawarrior.com/what-would-rheumatoid-awareness-mean-to-you/
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