Monthly Archives: December 2009

Happy New Year 2010

Sitting in the quiet darkness (another night I can’t sleep through the night… great) thinking about all that has been 2009 and thinking about what might be 2010… it has been a hell of a year.

Who would have thought, as I sat last New Year’s Eve, that I would be sitting here a year later facing RA and what could arguably be one of the biggest adventures in my life… I was ‘limiting’ my ‘activism’ to Breast Cancer awareness… because of my mommy… and my aunt bea… but now I think I have a whole new cause… one that is interestingly closer to home… one that doesn’t have as many advocates (by all appearances…) I wonder if I will have it in me to become active in an RA ’cause’… Me thinks it is something that I NEED to do…

I don’t, as a rule, make resolutions (they simply get broken anyway) but I think that this year I will set as my goals…

Loosing another 30 pounds or so…
Making a concerted effort at Tai Chi
staying as healthy as is humanly possible

and taking up the cause, in some way or another (lol… even if it is “only” through the pages here…) the cause of RA.

I do not want to spread myself too thinly (I have already made that concerted effort… to give myself more of a life)… but I think that this is important…

Uplifting Morning

Woke up early… achy… dry mouth (attributed to the prednizone) and just fundamentally restless. Was a rather down morning until I decided to come here to make myself feel less… restless… less… depressed.

And what did I find… several comments that really really made me feel better… which is a good thing right now.

Yesterday was a horrible day for me mentally and emotionally.

I found new bruises.. new bumps… and new places that hadn’t ached before. I spent the day staring out the window wondering… watched the movie Funny People and found myself wondering… more. all in all a not so great day.

But this morning… In the comments that I moderated… I found people who can relate… people who are where I am… or who used to be where I am and are now further down this adventure trail than I am. Their comments where incredibly uplifting… more so probably than any of them will know… made me smile and get my head back in the right place….

So here I am… wicked early in the morning looking at the Susan Komen Marathon for the Cure shirt hanging on the back of the chair (it came yesterday too and made me doubt my sanity) and realizing that, I can do this… I’m not the first, that’s for damn sure, and I certainly won’t be the last… and if I can do my part to make someone else realize that this may be a LIFE sentence (as in… it will always now be a part of my life) but it sure as heck not a DEATH sentence and it can be a wickedly long RUN ON sentence (sorry, I was almost an English major once upon a time) … I can do this and so can you!

Now… where are my running shoes and my tea?

Reading Everything You Need To Learn and Do

Been doing a lot of reading… Not probably the best use of my time off… but it is effective, and it means that I am learning and starting to deal with… life… exercise… diet… rest…

It is a really really good book… A Patient-Expert walks you through everything you need to learn and do… the first year… Rheumatoid Arthritis… an Essential guide for the Newly Diagnosed.

I could probably drown myself in pity (and once in a while, I do… but only for a few hours or a day)… or dwell on the things that tell you all of the horrible things that could happen to you… but to what end… for what purpose? All that would do is make me feel worse. With this book, I am looking at how to live life and make life better…

Prednizone change

Well… she upped my dose of prednizone for a while longer. Hope it helps. We went walking last night to look at the Christmas lights and things got ouchy in places. I know I need to push through the ouchy, but man, there are times when I just really really really don’t want to…

A Letter to People Without Chronic Pain

I found this this morning on an RA forum and it spoke to me a lot…

LETTER TO PEOPLE WITHOUT CHRONIC PAIN

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those who think they know, many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me….

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me–stuck inside this body. I still worry about school, family, my friends, and most of the time, I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “but you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being social” and so on….it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise or “do seomthing to get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain that you could ever imagine.

Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means I have to do it right now – it can’t be put off or forgetten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is a worldwide network (both on and off the internet) between people with chronic pain. If something worked, we would know. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all of the time,I know that I am doing my best to cope with this and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways, I depend on you – people who are not sick. I need you to visit me when I am too sick to go out…Sometimes I need your help with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you and I do thank you for listening, it really does mean a lot.

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Friends are just angels who have forgotten how to fly

Adjusting to knowing I have Rheumatoid Arthritis

Okay… so… yesterday was appointment number 2 with the Rheumatologist.  I like her.  Yesterday she was a bit busier and more harried… but she was running behind and she was very apologetic over it all… first doctor who ever did that, too.

So… blood work and x-rays came back.  I don’t have Lupus.  I have not be exposed to hepatitis.  I have RA.  I thought MAYBE I had it 5 or 6 months.  NOT.  Based on the test results, and the already erosion of bone in my hands and feet, it has been at LEAST a year.

Wow.  At least a year.

Still a good bit of swelling in a lot of joints, so we bumped the prednizone back up to a pill a day.

Yesterday I was really disgusted with myself.  How could I not notice for a whole year?  How could I blow it off for so long?   Guilt is horrible.  Yes, I know it isn’t a constructive emotion, but I don’t care.  Went to Walmart to pick up folic acid and methaltrexate.  And the adventure begins.

This morning I’m less beating myself up.  I’m more… weird.  Contemplative…

It is starting to be really real. I’m waking up and remembering to take my pills…. out of sheer “duh, stupid, it hurts” I think, but I’m remembering…

Just another quiet Sunday

It is a beautiful Sunday afternoon.  Sun is shining.  It is in the 60s.  It totally sucks being on pager duty.

I went on a several block hustle this morning… until the pager went off and I had to come back home… sigh.

Christmas tree is wonderful company… so is coffee with peppermint mocha creamer.

I’m tired this afternoon.  I feel like i could take a totally forever nap this afternoon.  I don’t feel so bad anymore though, because I realize that tired is a part of me…

I’m starting to try to take stock in why I’m writing (given that I know no one is actually reading this). I want to help someone who is facing what I am facing… or what I have been facing…

I think it is really depressing that, as soon as I was really starting to make progress in loosing weight… I get RA

Rheumatorid Arthritis

And… another chapter begins… or maybe… a chapter that I didn’t know had already begun sneaks in.

It has been a bad couple months.  I just guess I’m starting to realize how bad.  For starters, I’m not sure where the whole half month of October went nor most of November.  Thanksgiving wasn’t too terribly bad. I managed the turkey and it turned out really well.

But I have been not feeling “right” for a while.  Not sure why.  Heck, not sure how long… but I know that the last time I felt really really right was at least in June… and it has been getting progressively worse.

It started in my toes (at least that is where I recognize it as being first noticed consciously).  The wide part of my feet got swelled and didn’t really go down.  It hurt and it hurt continuously for a couple weeks.  Shoes got tight (the pair that I got for my birthday.  It couldn’t have been gaining weight… I had/have been loosing.  Wasn’t sure why… figured it was just one of those weird woman things…

My left wrist got a swelled spot on the wrist below my thumb that would come and go…

My fingers would get tight… felt weird to make a fist.  then I couldn’t close the fingers the whole way… I couldn’t make a fist.

First the left hand

Then the right

Weird, huh?  The orthepedist told me that I would get osteoarthritis in my right hand becuase of the break 10 years ago and how badly it healed.

Went to the doctor (after much discussion about my using my hands entirely too much… ) becuase I just couldn’t deal with the inconvenience or the way I was feeling in my joints any more.

Did I do the research first?  Duh.  I had a hunch what it might be.

I was hoping I was being a hypochondriac.

I wasn’t

The DR sent me for blood tests

and xrays

and called me two days later, not the 4 they told me they would

and said you have positive RA factor and you need to see a rheumatologist.

More blood

more x-rays…

now i’m on prednizone and hurting less… scared… and… dealing with reality.