Category Archives: rheumatoid arthritis

I’m Walking… I’m Walking…

Posted on January 7, 2011 | 1 comment

Okay… Good news… Enbrel seems to be agreeing with me (at least for now).  I had some itchies at the the injection site.  I was light headed for about an hour.  I had a headache the next day.  The light headed was probably because I hadn’t eaten.  The headache Sean said usually isn’t Enbrel, but Enbrel says it is common.  I had one.. whatever it was, I had one yesterday.

Yesterday my mom kind of poked at me because I was talking about Tai Chi for Seniors because I’m only forty(mumble mumble)… he he he … I’m 45 and that isn’t even 50 yet and that SURELY isn’t senior.  HOWEVER… given that sometimes I feel achey and tired… I figure that if I read a book designed for people older than I am… when I have those days… I can stop and think… hey, I can fall back and take even the slowness of Tai Chi just a little more slowly and a little more gently.

I also explained to her what squishy is… kind of.  The doctor tells me that my joints are squishy.  I believe her.  She went to doctor for a really long time… I figure she knows.  I can’t feel the squish she talks about.  My reference to the squishy-ness is… my one pair of running shoes doesn’t fit my toes without hurting so I wear my other pair.  My knuckles don’t bend quite right.  My wrist aches a little bit differently.  My hip or my knee  doesn’t feel right.  The squishy is swelling (which is why my toes don’t fit my shoes quite right) but not like I got hit with a baseball swelling that is a bump that is big and you can see… more all over swelling.  Don’t get me wrong… I can sometimes actually SEE the swelling.  My knee has gotten bad enough that I have HAD to wear one of my really big pairs of sweats because my jeans wouldn’t go over it… it was almost twice the size of my other knee.  Mostly I feel it, though, rather than see it obviously.

And today (as is the title of the entry) we went for a walk.  8 miles… to the library and back… Stopped off and the pharmacy… picked up Tiger Balm Ultra (it’s white, not red) and warmer and longer lasting… I love this stuff.  Right now, I’m feeling the 8 miles… my hip is a little bit sore and I feel like I could nap a week… but I feel pretty good and my “tight” running shoes are fitting fantastically…

It was in the 40s when we left home, it was in the 60s when we got home… I was sweaty BIG time by the time we got home (and for some reason when I get sweaty… my bra… love my Danskin bras… gets soggy and when I sit down I freeze… so hot bath and now a well deserved rest before we go pick up the squirrel)

1 Comment

Posted in Journalling, Post A Day Post, rheumatoid arthritis

Tagged , , ,

Enbrel Shot Number 1… update!

Posted on January 5, 2011 | Leave a comment

Okay… so much for psyching myself out… it was incredibly anit-climactic… Yes Sean (bless his heart) warned me about all of the wonderful things that I might be able to expect…

Get sick more easily (OH BOY!)
— wash your hands and use paper towels to shut off the water in public bathrooms
— don’t open doors if you can sucker someone else into it
— don’t push the buttons on the elevator…
— hand sanitizer is your friend (OH BOY)

If you have surgery… stop taking embrel a week before and wait until your surgeon releases you to start it back up…
If you have dental work other than cleaning… or maybe it was smiling as you pass a mirror… something like that anyway… stop a week before and wait a week after before starting it again
If you catch a cold… go see you PCP and get checked out and wait a week after you are WAY better before starting back up again
If you get a bacterial infection… go to see PCP and get meds… a week after meds, you can start embrel back up
I will let you hash out the… if you have stuck the needle in a clean spot on your tummy and you pull back and see blood… take it out and throw away $800 worth of meds and get a new needle… hash that one out with your doctor or your doctor’s nurse… I will definitely be listening to Sean…

The injection site rash that can be from a day to a week can be a pain in the… injection site… =)… but benedryl is your friend.

Sean also managed to mention one other thing that I sort of didn’t quite realize… people comment on things if they either REALLY REALLY are angry (which is what typically happens) or are really REALLY thrilled about something (which happens way less often because they don’t think about being thrilled…).  He also said that there are lots and lots of bad things about him out on the internet because he is Dr Booth’s gate keeper and he takes the blame for things that he does on her behalf… because it is in the patient’s best interest.
It was kind of a duh-OH… DUH kind of moment for me… Dr Booth has, more than once, comment on how I’m a weird patient… I tough it out and do what I need to do to get stuff done… I don’t generally call Sean unless I am in A LOT of trouble (like I can’t raise my arm above my head without thinking I’m going to pass out… or like I can’t bear weight on my leg without it making my eyes water and my breath catch… you know… the little things) so I’m not really a patient that is much trouble and when I do call there is most usually a REALLY good reason… so I guess I never really realized that there are patients that are a total pain in the arse for them… or that those patients want it NOW… (I want a feast… I want a bean feast… don’t’ care how, I want it now… hello Charlie and the Chocolate Factory)… I know people like this… I guess we all do…
SO… In the interest of being one of the OTHER people (the happy ones) that occasionally don’t sit back on their behind ends… let it be said that I could not be happier with either Dr Booth (who takes her time with me even when she is running behind… who doesn’t let me settle for… aaaahhh I’m mostly good… who has a great sense of humor and enough REAL knowledge to see all of us through) or Sean her nurse… who is honest and gives you the worst case but is honest enough to tell you as much… who laughs at reality and will be brutally honest with you even when he knows it totally isn’t what you want to hear.  I’m glad I didn’t kick him today and the shot (while it still is a little ouchy) wasn’t nearly as bad as I thought it would be.
And now… I’m sitting here listening to Raffi and tough it through my last day of pager duty!  I bough Chi Walking from B&N and now, I am going to use my Embrel and Chi Walking to get me through the Austin Half Marathon in just about 6 weeks!!!… Watch for me… I will be wearing the purple hoody that says Seizures Suck!

Leave a comment

Posted in Embrel, Post A Day Post, rheumatoid arthritis

Tagged , , ,

Gallery

Trying to Eat Healthy and Still Live a Life…

Posted on January 1, 2011

This gallery contains 2 photos.

I’m trying to cut costs as much as I can (given that MY meds are $1800 a month and Amandya’s are another 700… cutting costs seems like a dandy idea… thank you federal government for making it soooooooooooo much cheaper … Continue reading →

Leave a comment

More Galleries

TAI CHI FOR ARTHRITIS

Posted on December 31, 2010 | Leave a comment
This magically (okay… I told google to send it to me so MAGICALLY might be a stretch…) showed up as a link in my email today.  I am still determined to find a Tai Chi class somewhere that I like so I can learn this along with Yoga.  My Rheumatologist says that some of the best things I can do for myself (other than giving myself a break and not beating myself up quite as much… go figure…) is to do both Yoga (Hi Bea… I’m looking SO much forward to January 13th… signed up already) and Tai Chi.  I am still looking for a nice gentle class that I like… I will find one.

By: Dave Gordon

The ancient Chinese martial art of Tai Chi may provide physical and emotional relief for people suffering from arthritis. Taking classes twice a week for two months helped people with osteoarthritis, rheumatoid arthritis and fibromyalgia feel better and move more easily. It reduced pain, stiffness and fatigue, and improved balance. Tai Chi involves slow, gentle movements along with deep breathing and relaxation to build strength and flexibility. Participants who took the classes felt better, improved their sense of wellbeing and slept better. The study was funded in part by the Arthritis Foundation and the U.S. Centers for Disease Control and Prevention, and was presented at the annual scientific meeting of the American College of Rheumatology in Atlanta.

Leave a comment

Posted in rheumatoid arthritis, Tai Chi, yoga

Tagged , ,

Gallery

It’s my pity party… get over it

Posted on December 9, 2010

It’s a crappy day.  It is going to be a crappy day… it has been a crappy day since yesterday afternoon.  Deal with it.  I will get over it… you can enjoy the party with me or you can ignore … Continue reading →

3 Comments

More Galleries

Fingerless Gloves

Posted on December 2, 2010 | Leave a comment

I’ve always loved the look of the Bob Cratchit look in hand wear…

His were totally way better looking… they were gray and had the lived in look… these are, interestingly enough, breast cancer support pink and were half of a two pack… the other pair (the actual fingerless gloves pair) was striped white and pink and purple (go purple) and gray… this pair was actually the pair that HAD fingers… but you know what… my knuckles really kind of ache in stupid places… places that the “right” pair of gloves doesn’t quite cover… at least they do sometimes.  So I sat around and looked at the gloves and thought… you know I think if you cut these things you can doctor them enough to make longer fingered fingerless gloves… They are probably still too long… Typing in them isn’t so easy…  but they worked today while my hands hurt… until they warmed up… and the cuffs (go go gadget dead guy in my arm) are just a scooch longer… so it helps just enough of my wrists to really help ease the aching.

Where did I manage to find these wonderful things?

K-MART!  Naturally, they don’t actually have a K-mart anywhere nearby… and Walmart here is the “I’m mister green christmas” land… still only has the ones with full fingers and the aren’t as long in the wrist as the full fingered ones of these… so I stocked up on my recent trip home.  Best yet… Black Friday means they were WAY cheaper than usual… so I totally stocked up.

So now I have a half dozen colors of fingerless gloves.  Lots of black fingered ones that I can alter…

I get made fun of… Gotta love the ridicule that lasts throughout the lifetime of some people… but you know what… I have rarely taken most people’s opinion seriously… And despite the fact that Stacy and Clinton would highly frown on my choices… Right now, I care about the fact that my joints don’t like the cold so much and even on a good day my fingers and toes are cold (which my Rheumatologist tried to explain to me… but all I managed to get out of the conversation is I shouldn’t worry while it isn’t NORMAL, it is kind of normal).

So… there it is… my fingers are happier… and if I can bring laughter to people who don’t care and don’t get it… at least they are happier

Leave a comment

Posted in rheumatoid arthritis

Tagged , ,

Gallery

Just What Nobody Wanted

Posted on October 31, 2010

I’ve been thinking over the last year (it has been almost a year now since I’ve had my wonderful diagnosis of RA) and what I’ve learned.  I think the biggest thing I have learned is that it is exactly what … Continue reading →

Leave a comment

More Galleries

Gallery

On Not Giving Up What You Love…

Posted on October 21, 2010

I was wasting time this morning waiting for my work computer to load and be all happy and I found this in RA Warrior’s listing… The Goal Is Not Perfection.  Don’t give up the things you love… It is linked … Continue reading →

Leave a comment

More Galleries

Gallery

A Whole Different Reason To Wear Purple and I Let Everyone Down…

Posted on October 20, 2010

Okay, I will admit that, today, I was a bit entirely too preoccupied with my own problems today.  Today was my one month appointment in ‘celebration’ of taking my methotrexate injections.  I was thinking entirely about how my shots were … Continue reading →

Leave a comment

More Galleries

Look Deeper

Posted on October 1, 2010 | Leave a comment

What you are experiencing with your RA (for RA, insert whatever situation or condition you want to put in there).  Are you getting everything out of your life that you want?  What can I do to get more out of life.  How does RA impact your body?  More important, how does RA impact your emotions?

This morning, there was a really interesting commercial on TV about living with RA.  It WASN’T selling a new drug, it was a motivational speaker who has RA who is trying to get across to others with RA that they (we) can impact our lives.  I guess there really was a reason I was awake really early (besides the silly dog had to pee)… hello… yes, I’m listening… and yes, I’m listening mom…

The website was Real RA Living and it is put together by Bristol-Myers Squibb, but it isn’t in your face selling drugs.  It is about how you can take charge of your life and how you can learn to live with RA in many different ways.

The website has information about how RA affects your body… and how it affects your mind… about your moods… and kind of some (maybe not as much as I would have liked… but… hey… that is why I really like Yoga so much) about the mind body connection.  It is a well put togehter website, even if it isn’t incredibly deep on help or information, it gives you a place to start digging and start thinking.  And it gives you likes to other online resources (like the Arthritis Foundation, Arthritis Support and Let’s Talk RA) where more information can be gotten.

Some of what is on the website is stuff that I learned because I’m me.  I dug as much as I could when I was diagnosed and I learned as much as I could… but a lot of it even if I did “know it” I needed to be reminded of.

I can take control.  I can affect the way I feel… and the way I look at things.

Leave a comment

Posted in motivation, rheumatoid arthritis