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World Arthritis Day

So, do you think there is any weird coincidence that on World Arthritis Day I’m taking my little boy to a second opinion Rheumy?  Not sure, but there seems to be some kind of poetic justice in it. I sincerely hope we get some kind of answers this time.  The recent visit to the shrink gives me some hope that answers are possible… so… knock on wood (gently… it is a hand achey kind of day).. .

 

Adventures…

I’m trying to decide how I really feel, right now, about adventures. I’m trying to stay my Mary Sunshine self… but it isn’t working. I’m scared and thinking that maybe not knowing really isn’t such a bad thing.

I was having weird hip pain for a couple months. If I keep taking industrial strength Napproxin, it takes the inflammation out and takes the edge off the pain. I can stay reasonably good. Sometimes it hurts a bunch… but mostly I’m okay. But I can’t keep taking industrial strength Napproxin indefinately… so my Rheumy said that (if I stay off of it for 24 hours) if it hurts at least a 5, I should get an MRI to find out what is going on.

It hurt more than a 5… so I scheduled the MRI. It was with contrast. I should have known this wasn’t going to turn out as expected… when I got to the local MRI place, the machine had JUST broken down (yay me) and I would need to wait an additional 5 hours and drive 35 miles one way to get to the only other place I could get in unless I wanted to wait another week.

No… I was not going without NSAIDs for another however long… 5 hours it was…

I like the one where I ended up going. They gave me music and a cloth to cover my eyes and they didn’t blow out my vein when they gave me the contrast. It still took an hour, but it was a less sucky hour.

That was Thursday.

I knew my Dr only works till noon on Friday and I didn’t expect to hear anything then…

Yesterday, when my phone showed her office… I expected her nurse… or PA or whatever…. It was the doctor… not the best sign…

The good news… my hip is fine. I have a little bursitis in the joint which will clear up with time. Also reasonably good news… what is going on isn’t my back (L5-L6 vertebrae) or the nerves, disks or degenerative disease.

OH boy… the GOOD news is that the two things I was concerned with weren’t involved. WHAT was the bad news. NO no no, I really probably don’t want to know…

My uterus is enlarged. And being pushed out of its normal position by a fibroid tumor that is the size of my uterus. I need to find an OB-GYN who is willing to see a new patient this week (THIS week? REALLY? geeze) to talk about what now. I found one. It wasn’t easy, but I found one (most won’t see new patients before middle of July). Apparently, my uterus is pushing against my hip.

I had a back MRI last year that none of this showed up on. THAT MRI showed my ruptured disk and pinched nerves and that happy stuff… but no one saw this… so whatever is going on has been in the last year.

So, I have an appointment. And a computer and an internet connection. So, I’ve been digging. I pretty much know what I’m going to hear on Thursday. I’m going to need a hysterectomy. I’m not sure when I would get surgery, but it will prety much mean a hysterectomy… I told a friend this morning that it will only be a hysterectomy. She is thirty something and fighting her own battles but when she heard “only” a hysterectomy… I could almost see the astonishment at the comment. I had to smile… I understood the astonishment. It was an unsual statement to make.

But… I’m looking down the barrel of menopause anyway… and I get migraines all the time… and… if this will help get rid of the problem, then, it really is just a hysterectomy.

I have a computer and an internet connection… and I did REALLY well in online retrieval class (which is either a really good thing, or a realy bad thing, depending on your perspective… ) I know that I have a 1 to 2 in 1000 chance that this is cancer (a little higher chance because it is associated with menopause).

I know that, if I have to have surgery, I have to stopy my Humera… Last year I had to stop my Enbrel and after I restarted it, It never worked as well after that. I’m scared that will happen with my Humera. I don’t want to go back to having more than 2 involved joints. I don’t want to have to be tied to infusions every 6 weeks. I’m not sure if I’m just fundamentally messed up or not… but I’m more scared of what might be than what probably will be… maybe because I know what happens when my RA gets pissed…

So, my adventure continues. I’m not sure I’m up for this one, but… it is what it is…

Mall Walking

Okay… so… I’m trying despirately to make the most of the new office space location.  I can’t make much of my 3′ x 3′ desk that has to house my PC tower, two montiors, phone, mouse and keyboard and coffee cup…. Hell, I am LUCKY if I can put a steno pad on the freaking desk too… although I did manage to put up my electronic picture frame so I can at least annoy my boss a little!!!

Poking fun at the smoking zoo, earlier this morning was kind of fun…

At lunch time I braved the 90 degree heat with 80% humidity to venture over to the nearly defunct mall next door.  Mall Walking in a nearly deserted mall is great!!!   There were a few shoppers, a few workers holding down the walls, and several people in the food court… there are some interesting quirky stores (even a Hot Topic) left in the mall… even if there are LITERALLY no anchor stores.

The water features are still working, the AC is working, several other people were wandering aimlessly around… a couple actually power walking.

It isn’t my favorite mall (NO Disney store… eeesh) but it will make for a nice place to walk in the heat… if it doesn’t kill me walking the two blocks distance from the office door to the mall doors.

Am I being too mary sunshine here?

How Do You Deal With The Well Meaning Advice?

You know you get it. The advice about how you should be dealing with what is going on in your body. Cut out red meat, fish, all meat, fat, sugar, carbs, gluten…. Take spoon fulls of cod liver oil… take spoon fulls of <insert snake oil of the week here>… etc.

How do you deal with it? I’m grappling with how I think I should deal with it.
I mean, if I were to TRY to take everyone’s advice… I would be out in the field grazing with Bessie. There are carbs in carrots and apples and oranges and blueberries (probably in the grass Bessie eats, too… I can’t seem to find the nutritional information on that… ). Gluten free? I don’t have enough money to completely outfit my house with “Gluten Free” pans and everyone else’s pans and never the two shall ever touch the same dirty dish water and then spend a small fortune on totally gluten free food, especially after I already spent the umpteen hundred dollars getting tested for gluten sensitivity.
I’m trying. I’m really trying.
I drink my tea without any sugar or any sweetener (at least 97% of the time… sometimes a tall glass of sweet tea is just way better than anything else). I drink quarts of water. I don’t walk as much right now as I should, but what set me off on this tangent is the fact that my hip is hurting a LOT lately and the NSAIDs are taking the edge off, but if I stop them, the pain is back… I hurt… and I have this way for the last 2 months or so.
I already feel like a freak. I get caught washing my hands in the bathroom humming happy birthday (TECHNICALLY, I’m supposed to wash my hands for 2 complete “Happy Birthday To You” songs… with hot water and soap… even when there is no hot water only whatever temperature they have the motion senstive faucet set to). I try to not touch door knobs and elevator buttons. You think I don’t get really unconfortable stares for that? And using a paper towel to touch the buttons and handles on the communal coffee pots/makers at work? EEESH. If grazing with Bessie would make me NOT have to deal with stuff like that, you think I would still be spending $3000 a month for the 6 tummy shots I take a month plus the pain pills and the other meds that I take every day.
I know they mean well. I know that whatever they are trying to suggest has helped other people with things, maybe even with this thing (whatever this thing is)…
I tend to just smile and take it for the help that I know it is meant to be… but there are days… there are really really days… when I want to be my snarky self and say something like… well… like this…

Living an RA Day

While everyone that has RA has their own particular flavor of RA, we all share a few things.  We all share the fact that we have autoimmune arthritis.  We all have some degree of pain and stiffness, many of us have some level of disfigurement or some level of disability.  More importantly, we all have to get through each and every day.  It made me wonder how many of us have special ways of getting our days done as elegantly as possible.

Up and at-em…

When you wake up, be gentle with yourself.  Take stock of your body and how it is feeling and note anywhere that might give you problems.  Take a deep breath and relax and don’t push yourself more than you have to.  Nothing that you have to do is likely to not be able to wait the extra thirty or even ninety seconds that it takes to wake up to your day.

It is on days when I get caught up in other people’s reality rather than my own, and don’t take this time to take stock and set my mind in a positive direction that I end up having really bad mood and bad outlook kind of days.  Just being able to take those few minutes is often all that it takes to make that big of a difference.

It also let’s me in on what other things I might need to do a little differently during my morning due to the interesting things I find.  If it is an easy, less stiff, less achy day, I can use whatever cup I want to drink my coffee… Or tea… Or whatever I feel like in the morning.

Coffee cups (beverage cups) are a big deal with me.  I’m not sure if genetics plays any part in it or not, but I know that I probably have as many cups and mugs as my grandfather did.  They line the tops of my kitchen cupboards and fill (over-fill) my cup cupboard.  They fill my heart with smiles because when i use them they bring to mind the situation or the person that is connected to them.


If there are any questions about my hands… I know I need to use one of my ‘bad day’ cups.  I buy cups that make me smile.  But I buy cups with good days and bad days in mind.  A bad day means using maybe a smaller plastic (melmac?) cup.  One with a handle that I can hook my thumb through and hold my palm under the cup to help control it and not dump the coffee all over myself (to this end, I also usually add one or two ice cubes to make the beverage of choice less scalding hot… Just in case).

 

An alternative to the smaller plastic cup is the jumbo sized ceramic one.  This one I can slide my whole hand into so I can use bigger, less painful joints.  This bigger one has the additional benefit of meaning that ouchy feet have to make fewer trips to the coffee pot.

 

 

 

 

I even have one or two cups that are plastic and big with huge hand sized handles for really bad days.

 

 

 

 

 

 

Tubby Time

I’ve found that it is much easier for me to put the plug in the bathtub with my foot than it is for me to bend over and put it in with my hands.  That is as much because of the osteoarthritis in my back than my RA, but it is still a consideration.

I have also discovered that, despite the fact that it kind of tends to irritate people, I take hot baths, often multiple times a day, often even in the warmest weather because my tootsies get really cold.  I know that it is a waste of water.  I know that it is a waste of time.  I don’t care.  And really you shouldn’t either.  Whatever helps, whatever makes you feel better, that’s what really matters.

I found those stick on the bottom of the bathtub feet and flowers from like the 60s and 70s that keep you from slipping (until they get brittle and cut your feet) in the tub.  I have those to keep from falling when I feel inelegant.

On Your Way

Plastic glasses and plates are often more practical than glass.  I’ve wrapped some silverware with rubber bands to make it easier to hold when my hands hurt.  It isn’t sexy, but it works, and really that matters at least as much as anything.
I’ve wrapped my car keys in several rubber bands to, as a way to make holding them and turning them easier.  Fortunately, I can just push the garage door opener and it magically opens, but some days the car keys are a challenge.

I’ve given up trying to wear completely business appropriate shoes to work.  With feet that are sometimes okay in the morning but by lunch time are totally not happy with even marginally pinchy shoes, comfortable matters more than sexy.  I sometimes wear my Vibrams Five Fingers leather shoes.  They look less dorky and are still squishy enough to give when my toes get angry.  Sometimes tennies.  Heels seem to be a thing of the past.

I’ve found that, even if you don’t have to lay down to zip your super tight jeans, a fork is often a helpful tool to pull up a zipper.
Fingerless gloves (or several pairs of those cheap “magic” gloves that come out every winter now with their fingers strategically cut off at the places I want them cut off) are great for days when the air conditioning makes my hands ache.  They are also good to keep the Tiger Balm from getting all over everything and staining my shirt.

Wrapping it up

I guess the biggest ‘get through your day’ tips though that I have are… be gentle with yourself.  It is your body.  It is your life.  You need to live it.  You know your limitations.  Some days they suck.  Okay, okay, limitations suck on a good day. But they are what they are and the best thing we can do is live within them.  That… and your biggest ‘tool’ to help you get through your day is your willingness to ask for help when you need it.  I know a lot of us would rather shut our hands repeatedly in the car door than to ask for help.  Independence seems to matter way more after we find ourselves needing help than it ever did before, but there are times when we just need to suck it up, swallow our pride, and admit that we need help.  We need other people.  We need… whatever it is when need.
And sometimes, the biggest thing we need is an understanding ear, a virtual pain free hug, and a smile to brighten our day!!!

Want more ideas on dealing with day to day life of having RA, visit the WAAD website to connect with others just like us here 

you can sign up to attend the  WAAD Virtual Convention at this registration link

Inspiration Fountain

In my favorite sanctuary there is a fountain. The sound of the water is the perfect accompaniment to the wind chimes, the traffic noise and the birds singing. I really find the sound of water soothing, so I enjoy sitting by the fountain and watching the water splash on the rocks and listening.
Lately, however, something new has been added.
Some of the rocks have shown up with words written on them. Some are names (seeking infamy) and some are motivational (love…. I’m okay… Peace). Now the fountain that has brought peace has started to bring inspiration as well. It’s kind of funny… The meditation garden (always deserted) find ways to meet people at their need.

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My Hands

My Hands
hold my children’s’ hands
when they are sick
when they are fearful
when they need to be comforted

My hands
write about
my condition
my children’s conditions
my ability to bring light and hope

My hands
crochet chemo hats
make brownies and cookies
send messages to friends
fighting their own fights with their own hands/heads/hearts
bring awareness to RA

My hands
are proud hands
not ashamed
of lumps and bumps
or even of the twists and turns that don’t yet exist
and not afraid to be held up to be seen
to be shaken (gently please)
to be held

A little catching up to do… but I’ll get there

Hey everyone – I just wanted to tell you about a new activity I’ll be doing this April. The Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. I hope you’ll join me in writing every day about health. It’s going to be a lot of fun and I’d love to see what you have to say about each of the topics, too. All you have to do to join is sign up here:http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around. Looking forward to writing with you!

Reflections on a Lonely Childhood

I’ve been thinking (and reading) a lot, lately, about Asperger’s Syndrome.  It may or may not be relevant going forward but at the very least it will allow me to better understand the lack of shades of gray that my beautiful niece deals with.

As I’ve been reading Aspergirls and Pretending to be Normal it is more and more dawning on me how many of the characteristics are mine.  It makes me think so much of how much I resented my childhood and how much now what I dealt with my my childhood probably allowed me to mask the way things really were in my head.

I spent so much of my childhood reading.  I read almost constantly.  Ramona The Brave and Ribsby and hundreds of other books.  I was criticized for not watching out the windows.  I was sometimes spared the fear and pain of having to go ask people if it was okay if we swiped stuff from their trash.  Because I wasn’t actually allowed to have any friends it meant that I didn’t have to realize or deal with the fact that I didn’t (don’t) do well in crowd situations or with even small group interaction.

Now looking at it, I probably wouldn’t have done well with parties.  I always longed to be included.  But I’m not sure that being included would have been good.  I was always most happy when I was able to be all alone smelling the heavenly smells in the barn (burlap, hay, corn, wood, animal excrement).    Thinking now, I wonder if there are many other people who can tell at 80 miles an hour the difference between the smell of pig poop, horse poop and cow poop… I’m betting it is a me thing.

I’m not sure if it matters enough to me to pursue a diagnosis… but I’m pretty sure that I can count myself among the ranks of Aspergers Peeps…

Taking Stock and Contemplating

It has been a LONG ten days.  Surgery went well… enough.  Better than I expected, to be honest.  Now to allow healing to take place.   Steri Strips are holding tight.  Incisions are healing nicely.  Swelling is going down.  Even the immense bruises are going away.  And tomorrow I go back to work, brace and all.  Going to be a long day, I have no doubt.

I have spent a lot of time loopy (gotta love pain meds) and a lot of time thinking.  The fires the last couple days might have something to do with that… they have me thinking even more.

I’ve decided that life is too short.  In the words of my baby girl… You don’t know when you are going to die, why not do something totally out of character and enjoy yourself doing it.

I’ve decided to make a more concerted effort to not let stupid people irritate me over stuff that is pointless (at least for five minutes, I’ve decided this).  I know that tomorrow I will find it difficult to not be irritated, but I trust that the peeps that are my friends at work will make it all worth while.

This morning my left wrist was flaring really badly… both hands out of commission for several hours made for a fun morning.  Had my first enbrel shot in a month.  Actually looked forward to it so the creeping in fluffy joints would go back to normal.

Typing is still an adventure… but… it is getting better…