NOTE: When angry rants show up here, it means my anger has reared it's ugly head and will not shut up until I get it out - there is your warning. Some may call these type of rants 'pity party rants,' but I counter that I figure out things better this way, even if they are making me angry. So, in short, this is an angry rant. Not your cup of tea? Scroll down to another entry or go to another page.
Patience is a virtue, I know, but sometimes I wonder what I am fighting for? Days upon days of pain while doctors figure out the right drug cocktail for me? I can't turn to food, as much as I am tempted to. My frustration - My anger, I am two weeks and some odd days off of steroids and thought things would be better, my appetite would snap properly back into focus and I can be happy again -
Only to find that my lower legs are swelling painfully now for the past few weeks. I'm nowhere near as heavy as I was, but even when I was at this weight before I never swelled this bad - doc is running tests and I am scared - what if I need surgery? More money down the drain.
I've cried three times today - make that four, damnit.
In other news, a personal victory. After the goading of my mom, I finally went and had my hair cut and styled. I had about given up on it, and some even mentioned buying a wig, but I came out of it with a decent style. I also have been taking a vitamin b supplement called Biotin - it hasn't stopped the Methotrexate related hair loss, but it has slowed it down.
Pam go SMASH,
RAmbling Girl
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Saturday, September 28, 2013
Tuesday, September 10, 2013
Expectations or damnit I want it now!
I have unrealistic expectations - I freely admit it, and it has been hard working with them to get them realistic.
Well, consider - when it was just osteoarthritis, I was prescribed medicine that had an almost immediate effect. For two years, I managed things until the recent flare-ups that tipped my doctors off to the RA.
I am now close to a year in my current treatment for RA, and so far my levels have remained elevated and not to my doc's (nor my) satisfaction. So far I have been through Methotrexate and Enbrel.
It's far from perfect.
Granted, I am walking and writing, but I have dull aches. Everywhere.
It's not on a major owwie scale, but it is enough to tire me. I take more naps than I am used to - not helpful when you are trying to lose the thirty pounds you've gained during your stint on Prednisone.
Which is about the only recent good news I've received - my doc has officially taken me off of the steroids - yea? The damage is done, my appetite is screwed and the weight is on.
I miss the days of simple and immediate effects. I know I have a road to travel to get this RA managed - I just wish it was now.
Impatiently patient,
RAmbling Girl
Well, consider - when it was just osteoarthritis, I was prescribed medicine that had an almost immediate effect. For two years, I managed things until the recent flare-ups that tipped my doctors off to the RA.
I am now close to a year in my current treatment for RA, and so far my levels have remained elevated and not to my doc's (nor my) satisfaction. So far I have been through Methotrexate and Enbrel.
It's far from perfect.
Granted, I am walking and writing, but I have dull aches. Everywhere.
It's not on a major owwie scale, but it is enough to tire me. I take more naps than I am used to - not helpful when you are trying to lose the thirty pounds you've gained during your stint on Prednisone.
Which is about the only recent good news I've received - my doc has officially taken me off of the steroids - yea? The damage is done, my appetite is screwed and the weight is on.
I miss the days of simple and immediate effects. I know I have a road to travel to get this RA managed - I just wish it was now.
Impatiently patient,
RAmbling Girl
Sunday, September 1, 2013
Prednisone - My enemy, My ally
Flashing back to when my doctor first stated that he suspected
that I had rheumatoid arthritis, I was feeling a little vindicated and sad at
the same time. For close to a year, I
was losing weight, feeling better, and the drug he was giving me for what we
thought then was just osteoarthritis were working.
Too much on my mind,
RAmbling Girl
The flare that brought me back to him was intense – I ended
up digging out the cane I thought I wouldn’t need again for a long while. The best appointment he could get me for a
rheumatologist? It was seven months out!
(Not a lot of rheumatologists in my area, and since my insurance company
was helping me out and the resulting fatigue was kicking me squarely in the
arse, I didn’t question it or have the urge to look elsewhere)
I was miserable right then, I argued. Can you give me something to tide me over
until my rheumatologist appointment?
Enter Prednisone.
A steroid, enough to take the inflammation away – I was
thankful and hopeful. At 269 pounds, I was hoping to continue my weight loss
and be well prepared for rheumatologist appointment.
But then as he was writing up the prescription, he said the
first words that have seemed to seal my fate: you will gain weight with this
drug.
What? Surely it would be a temporary thing, and I will be
off of it when I get what I need from the rheumatologist – or at least that’s
what I thought.
But as I started on it, I began to hear some of the same
things from the people in my weight watcher meeting and around me: Prednisone
will make you gain weight.
But I was feeling good! I could walk! I went on vacation
with my parents and I rarely needed my cane.
But what I didn’t pay attention to was that my appetite was out of whack
along with a few other things. I was
having such grand success with weight watchers that I was tracking my eating in
my head and everything.
That was my downfall – Once I was with my rheumatologist, he
told me that I could not quit this steroid quite yet – I had to be ‘weaned’ off
of it.
Fast forward to now.
I am 305lbs, depressed, and angry. I wonder truly if it was the steroid
or was it the people who kept telling me that this steroid could do this. Regardless, I have come to the end of my
chapter with the steroid – I am now out of it and currently relying on the
methotrexate and Enbrel that I have been prescribed. The last intention of my
rheumatologist was that this was to be the last of it.
So far I am feeling a little tender everywhere, and hoping
that he will not put me back on it. Now that drug influence is gone, it is time
to get my mind back on track – I hope.
Wednesday, August 28, 2013
Tale of the Maiden
The Tale of the Maiden
Gentle rains whisper
of a maiden long ago,
one who was one
with her heart and her soul.
Life embraced her
with wind and churning sea
expecting her to fight-
a warrior spirit she would need.
The maiden despaired,
pain flooded her weary heart
as Life's fierce embrace
threatened to tear her apart.
She then spotted salvation
two boats floated before her,
one was brand new,
the other was worn.
Decisons quickly made
the maiden chose her craft.
She ventured quickly forth,
her fate in her grasp.
Gentle rains whisper
of a maiden long ago,
one who was one
with her heart and her soul.
Life embraced her
with wind and churning sea
expecting her to fight-
a warrior spirit she would need.
The maiden despaired,
pain flooded her weary heart
as Life's fierce embrace
threatened to tear her apart.
She then spotted salvation
two boats floated before her,
one was brand new,
the other was worn.
Decisons quickly made
the maiden chose her craft.
She ventured quickly forth,
her fate in her grasp.
Why writing? Why not therapy?
NOTE: This post is also part of a contest: I am participating in the Writing contest: You are a writer held by Positive Writer . With that said, here we go...
Heh, the rabbit hole of all questions: why writing?
Answer? It started with reading, actually.
I was and still am a painfully introverted person. My mind and my imagination took flight, and I got my adrenaline rush by reading the likes of Hardy Boys, Nancy Drew, and Sherlock Holmes.
When I became an adult, the need for practicality and money making drove out the imagination, and I focused on my career. It was a lonely time, and eventually I tried a few times to start writing my own adventure - it never made it past a few chapters, but I was learning what power I had with writing. It excited me, finally a place where all those movies in my imagination could go and a way I could express myself.
Then three years ago, I was diagnosed with Osteoarthritis. I'm thinking my life is over, no one can save me. I turned to those mystery and adventures of my youth and read them again cover to cover. That is when I discovered something:
The Journey is never over for those who wield the power of words.
It's the truth - you are not confined by your body, you can recover the crown jewels, see wondrous sights, and even wrestle an alligator or two, all without leaving the confines of your creating space.
But the journey of a thousand miles begins with a single step, however. This effort I am on will be effort number ten in starting a novel. It will be a mystery, a bridge from the adventures I have had with reading my favorites over the years.
That has taken me through my recent diagnosis of rheumatoid arthritis as well.
These diseases do not define me - my imagination, initially used to take me away from things for a while, now has led me to express myself with writing. It is a risk in a way, because this is the way I choose to present myself.
I think it will be worth it though - if I can take someone on an adventure or see something in a new way, then my writing will have meaning.
In a non-fiction sense, it already does. Two years after I bought a used car from a dealer, a tire blew out on the rear. I was on the side of the road trying to change out the tire only to find that my car did not have a spare. I mean, who sells a used car without a spare?
This was two years later. I was angry, I was seething - I wanted them to know how disappointed I was and that I couldn't recommend them to anyone and that since it was two years later that I wasn't expecting a response but I wanted to let them know how I felt.
I sent the email to them with all of that in there...one week later they called me to the dealership, and I received a spare tire.
Never underestimate the power of writing - I knew it was worth it when it helped me through my diagnosis, and it has allowed me to be more than just someone with Rheumatoid Arthritis. It has allowed me to express my emotions like I couldn't before along with the many adventures in my mind and what I am encountering now with this autoimmune disease.
In short, I am a writer, and this is my story.
Until we meet again,
RAmbling Girl
Heh, the rabbit hole of all questions: why writing?
Answer? It started with reading, actually.
I was and still am a painfully introverted person. My mind and my imagination took flight, and I got my adrenaline rush by reading the likes of Hardy Boys, Nancy Drew, and Sherlock Holmes.
When I became an adult, the need for practicality and money making drove out the imagination, and I focused on my career. It was a lonely time, and eventually I tried a few times to start writing my own adventure - it never made it past a few chapters, but I was learning what power I had with writing. It excited me, finally a place where all those movies in my imagination could go and a way I could express myself.
Then three years ago, I was diagnosed with Osteoarthritis. I'm thinking my life is over, no one can save me. I turned to those mystery and adventures of my youth and read them again cover to cover. That is when I discovered something:
The Journey is never over for those who wield the power of words.
It's the truth - you are not confined by your body, you can recover the crown jewels, see wondrous sights, and even wrestle an alligator or two, all without leaving the confines of your creating space.
But the journey of a thousand miles begins with a single step, however. This effort I am on will be effort number ten in starting a novel. It will be a mystery, a bridge from the adventures I have had with reading my favorites over the years.
That has taken me through my recent diagnosis of rheumatoid arthritis as well.
These diseases do not define me - my imagination, initially used to take me away from things for a while, now has led me to express myself with writing. It is a risk in a way, because this is the way I choose to present myself.
I think it will be worth it though - if I can take someone on an adventure or see something in a new way, then my writing will have meaning.
In a non-fiction sense, it already does. Two years after I bought a used car from a dealer, a tire blew out on the rear. I was on the side of the road trying to change out the tire only to find that my car did not have a spare. I mean, who sells a used car without a spare?
This was two years later. I was angry, I was seething - I wanted them to know how disappointed I was and that I couldn't recommend them to anyone and that since it was two years later that I wasn't expecting a response but I wanted to let them know how I felt.
I sent the email to them with all of that in there...one week later they called me to the dealership, and I received a spare tire.
Never underestimate the power of writing - I knew it was worth it when it helped me through my diagnosis, and it has allowed me to be more than just someone with Rheumatoid Arthritis. It has allowed me to express my emotions like I couldn't before along with the many adventures in my mind and what I am encountering now with this autoimmune disease.
In short, I am a writer, and this is my story.
Until we meet again,
RAmbling Girl
Saturday, August 24, 2013
Um, Hi.
Oh come on, it's not like I haven't tried blogging before - I can do better.
Er hem, HELLO! :)
Now I suppose I should type in why I am here. That reasoning could be chalked up to two parts boredom and two parts ranting.
You see, about a year ago, I was diagnosed by my primary care physician as having Rheumatoid Arthritis. Let's just say my world stopped and my once rosy outlook on life plummeted.
I had been on the brink once before. 334 pounds and a initial diagnosis of osteoarthritis led me to an effort of trying to improve myself. Two years into Weight Watchers got me more active and sixty pounds lost. For the first time in a long while I had hope, and my arthritis went dormant.
But oh ho - if I only knew about the sleeping dragon lying in wait for me.
The revelation came in the form of a nasty flare up that my prescribed OA drugs were not working on. I go back to my doc, and that's when I get the word.
This first year with RA has been sucky to say the least. Along with my Rheumatologist fine tuning my drug regiment, I've hunted up and down the net for information, enlightenment, and simple support. That is why I will say right now that the purpose of this blog is to unleash another beast - my creativity.
You see, as much as my friends and my family do support me, I still feel a tiny bit alone. With the exception of one family member, none of them have RA. I have fellow blogs out there to lean on for the information and what life might be like in the future but in the meanwhile, I need an outlet.
I have always explored the world of writing, and still have a dream to write professionally in the future. One of the things I've noticed is when my emotions get into my writing, I can feel the power and the healing as well.
So in short, if you stick around, you might see some RA information, a vent or two, but mostly it will be me putting myself out here, in fiction and non-fiction form.
Nice to meet you,
RAmbling girl
Oh come on, it's not like I haven't tried blogging before - I can do better.
Er hem, HELLO! :)
Now I suppose I should type in why I am here. That reasoning could be chalked up to two parts boredom and two parts ranting.
You see, about a year ago, I was diagnosed by my primary care physician as having Rheumatoid Arthritis. Let's just say my world stopped and my once rosy outlook on life plummeted.
I had been on the brink once before. 334 pounds and a initial diagnosis of osteoarthritis led me to an effort of trying to improve myself. Two years into Weight Watchers got me more active and sixty pounds lost. For the first time in a long while I had hope, and my arthritis went dormant.
But oh ho - if I only knew about the sleeping dragon lying in wait for me.
The revelation came in the form of a nasty flare up that my prescribed OA drugs were not working on. I go back to my doc, and that's when I get the word.
This first year with RA has been sucky to say the least. Along with my Rheumatologist fine tuning my drug regiment, I've hunted up and down the net for information, enlightenment, and simple support. That is why I will say right now that the purpose of this blog is to unleash another beast - my creativity.
You see, as much as my friends and my family do support me, I still feel a tiny bit alone. With the exception of one family member, none of them have RA. I have fellow blogs out there to lean on for the information and what life might be like in the future but in the meanwhile, I need an outlet.
I have always explored the world of writing, and still have a dream to write professionally in the future. One of the things I've noticed is when my emotions get into my writing, I can feel the power and the healing as well.
So in short, if you stick around, you might see some RA information, a vent or two, but mostly it will be me putting myself out here, in fiction and non-fiction form.
Nice to meet you,
RAmbling girl
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