Category Archives: rheumatoid arthritis

Achey Breaky Tuesday

Okay, I have started to not like this game, at all… Man… got up this morning and hurt… everywhere.

Yesterday, I probably should have seen it coming, but I’m still not always remembering that I have RA and sometimes RA hurts when you don’t expect it to and that sometimes it hurts when you should expect it to and that I can sometimes affect when it hurts.

I should have realized and taken steps to try to counteract it ahead of time.

I didn’t.

Yesterday was a forgetful day for my kid.  I don’t know if it is the epilepsy or the meds to treat the epilepsy but she totally zoned out yesterday.  She went from telling me to remind her that she needed to go to tutorials after school to two min later not knowing why she had to go, not knowing she missed a test, not knowing she was failing because she missed the test…. not knowing who the teacher was she missed the test for… not knowing we had a dog…

If it wasn’t her (she just isn’t “with it” enough for long enough to come up with this on her own for 3o min so I don’t think it was her playing and it seems to follow a pattern) then it is something and we need to find the something.

She got caught in a lie… and this lie is a big one for the current situation… and she knows it.

DH was screaming at her.  She was screaming back.  I was trying desperately to get my albuteral out of its box so I could actually breathe.  She thinks everyone except her friends (FRIENDS?  really?  don’t get me started right now) suck totally and she wants to move in with them because we are mean and don’t let her have a life and don’t let her do whatever she wants and we put a roof over her head and provide food she refuses to eat most of the time and provide her with an IPod and a cell phone plan that lets her talk all the time to everyone and surf the net when she wants and go out and put the extra hundred or so dollars to the money she has for clothes to buy her the extra couple pair of jeans just because she wants new jeans… but we are unreasonable because we want her to turn in her homework so she won’t get -0- and fail and we want her to not lie all the time and we expect her to let us know where she is so if she has a seizure we know where to find her…

We are horrible parents.

She thinks “Shadow” has the right idea and that maybe emancipation would be a GREAT thing (at 15… she can’t carry the bowl of peanut butter down the steps when she comes down stairs so we don’t get ants in her room or mice but she is going to go out and get a job and an apartment and handle her own medical situation when OH Hey she can’t drive because of the epilepsy is so new).

So… long rant finally getting to the point.  With all of the drama and the fact that I went down to the park and cried and threw rocks at the creek and cussed under my breath in the rain… this morning I hurt.  My knuckles hurt.  My wrist hurts.  My ankles and toes hurt and my chest hurts… kind of inside breathing kind of hurts.

So, back on the aleve and maybe I will have to cave in and take a prednisone just because I have to drag her butt to the doctor today…

Yoga… Day 1

Well, yesterday was my first day of yoga.  Sixty min a day once a week is going to be the perfect amount to get me started.  I tried “taping” the class… but my nano won’t pick up enough to make it very useful.  I will try with my little voice recorder next time.  It seems to do better.

The class made me sore, but sore in a good way.  The teacher gave us a pretty thorough amount of information on poses… and after class people were kind of pulling together into a team to talk about how NOT a total beginner’s class it was and how fast she went and how they thought everyone did.

There were some people in class who were WAY good.  I followed along with the lady next to me.  Apparently that made me seem to be a better than average person.  interesting.

A couple people commented on how far I could take the poses since this is my first class.  I figure my Rheumy will kind of comment somewhere along the way.  She already made the comment that I should, based on where I am in my disease, hurt way more than I do and be less limber than I am but the stretching that I do in the morning after I work out (which I SO have to get back to…) is having its effect.  I’m glad it is. Maybe if it wasn’t… I would have gotten help sooner… but it is what it is.

Now… I need to get a listing of all of the poses that we did and start looking them up and getting a better idea how to do them RIGHT and how to move from one to the other.

Wonderful Day of Contemplation

This morning,  I decided to make soup for dinner (which is an all day thing) and brownies from scratch.  Turned out the soup was better than the brownies… oh well… won’t use that recipe again.

The soup required going to the store for potatoes, cabbage and carrots (as well as bagles, cream cheese, jelly, popcorn and a nice cold drink)… It turns into a 3 mile walk which was wonderful because I got to watch my daughter come back into herself.  She got a little dizzy a couple times, but cutting her Keppra dosage in half to work her way up seems to have had a good affect.  This is the happiest I think she has been in months!  I am wondering how long weirdness has been going on in her brain that we have been attributing to teenage attitude.  I KNOW the attitude will be back… but hey… today was precious.

I have another ingrown toenail which is infected… making it hurt and making my ankles hurt and squishy… but I really needed the walk (even though it meant carrying my laptop on my back in my backpack because it is my pager week).

I was soaking in a nice hot bath when we got home and I realized that a year ago… actually about a year and a half ago… I was at Ren Fest (go TRF) and I was in a great little crystal shop… lots and lots of quartz crystals.  There was one that was three crystals all stuck parallel to each other.  The shop owner wrapped them in silver wire and made a pendant out of them.  She called them the three ladies and she was hoping to find them a healing home where they could help three women.  At the time, I thought of mom, me and Amandya… but I didn’t know why other than mom is a breast cancer survivor (go mom!)…

It was an obscene amount of money for  a chunk of rock that lays around on the ground just about everywhere… but it talked to me… so I bought it and I’ve worn it a few times… it makes my heart smile.

NOW I know why I needed to buy that rock…

Mom is a breast cancer survivor.
I have RA.
Amandya has epilepsy.

I don’t know that it has any actual healing properties… but it brings peace to my soul and that is healing in itself.  I strung it on a chain that came from a dog tag machine and slid it over my head…

Everything happens for a reason.

I keep trying to remember that… my RA is for a reason.  If the only reason is to MAKE me slow down and take stock of myself… at least it has done that.

I wonder what purpose Amandya’s epilepsy has… I know that it has slowed me down even more… and it has caused me to reach out to try to help others with the same or similar problems (and to make friends with the mother of one of Amandya’s friends who is way sicker than both of us put together…  15 with RA, Lupus, blood clots in her brain… she has been in children’s hospital for FIVE weeks…

Every day is another day.  Every day I reach out and try to find the rainbow.  Somedays it is harder than others.  Today, it was a better day than I expected.

A Whole New World

Wow… what a year.  What a roller coaster ride…

Let me start by saying… Dell Children’s Hospital is the place to be if you have a kind with anything.  The only thing that I can find any fault with at all if the sofa bed isn’t designed to be slept in… there is a wooden bar that separates the left and right side that (when it is pulled out into a bed) digs into your back and ribs really badly.  OH… and the internet is incredibly slow.

The people are wonderful.  The library is really diverse.  The DVDs that you can borrow are even new releases.  The teen room on 4 isn’t huge, but it has a juke box, a foozeball table and a boomerang air hockey table.

The cafeteria isn’t massive, but the food is good and not horribly priced.  I will be taking my kid down for breakfast in a couple hours… they will give me a voucher for her so she can escape her room.  But the room service that they gave her to order from whenever she feels like it, whatever she feels like eating… you can’t complain.

Last night, at 10:00 she finally went down for her MRI.

The neurologist didn’t seem to think the EEG was going to show anything… at least that is the way he let on to me when we talked night before last.  Trouble was… it did.  Abnormal spiky and slow rhythms in the back right hemisphere.  Could just be the way she is wired.  Could be malformed blood vessels.  Could be a tumor.  Could be scar tissue.  We weren’t leaving the hospital until an MRI was done.  Yesterday was a busy day at the hospital… and the MRI was busy all day.  We spent another night in the hospital because we can’t leave until the MRI is read and interpreted by neurologist and we get a green light.

We started our anti seizure medicine last night, officially.  The loading dose apparently didn’t count… that was to just quiet whatever was going on with the back to back grand mals that she was having.

I’m stressing my mom…. 2000 miles away… because she can’t be here.

Me… I was up until after 11 last night and up at 4 this morning and up several times to check on her through the night.  I’m freezing.  My ankles and knuckles hurt.  Coffee is… icky, but it is keeping me going.  Yes, I’m eating… not because I feel like it but because everyone is making me eat.

Today, I have to call my Rheumy to change my appt for next week because she is going out of town.

By now, I should be getting a call from PCP on test results.

This morning… I totally regret being off the prednisone.

I was asked yesterday by most well meaning of relatives if I had contacted my support system.

I guess I answered her honestly… this is most of my support system… and you have been notified.

It is amazingly helpful to get messages back that I’ve struck a chord, or just a “hang in there”.  It helps so much…

Coffee and Contemplation

I’m feeling sorry for myself this morning.  I’m 99.9% sure the “better” I was feeling was attributed greatly to the prednisone.

this morning my ankles ache (not my toes… oddly enough… for which I am immensely grateful) 

Prednisone Free Day

Okay… I KNOW this is going to be a mistake… but… I have to do it sometime again.

Last night was my ‘add another 2 to my MTX dosage night’ and man did I feel it this time.  Last night it made me dizzy.  Today I feel light headed and nauseous.  I’m hoping that is a good sign because it means it is working.  I’m not holding out a lot of hope… but hey.

Friday night the dryer broke… so we are dryerless for a bit.  It is a gray Saturday, so hanging clothes on my “I don’t have a clothesline hidden on the back porch” won’t work so well unless the wind picks up or the clouds blow out.

Thursday was my annual PCP physical… so in general this is a less than stellar week.  I have not heard back on my tests yet, and I didn’t really expect to, yet.  Is it a bad thing that I feel like a fatalist and figure something will be found this year in my tests?  Doctor did congratulate me on my half marathon finish (medal came Thursday, so that was a bright spot) and on my 5 pound weight loss since November.  Think it would have been a bad thing to rat myself out and tell her that I gained about 4 pounds gearing up for my race?

Naw… I will have (hopefully) some of that off by my next Rheumy appt on the 4th.

So, yesterday was my last day on 2.5 mg prednisone.  I took 5 though monday to get through the race without killing anyone… and down to half all week.  I want to see what I can accomplish now without any.  I hope that I’m not being optimistic that the MTX is working and it is really the predisone hiding stuff… but I have a feeling I’m going to be disappointed…

For now… I have computer maintenance to do… clean up one desktop so we can get it working better… make backups of some more files than I had actually planned, but it is better to have too many backups than not enough.

maybe take a trip to the laundromat (washateria?) to dry clothes for the school week.

18 February, 2010 12:43

To all of the doctors office receptionists… if you cant go 45 seconds without blowing your nose or sniffing snot or coughing up a lung… don’t touch my insurance card.  Don’t touch the pen that I have to sign in with.

I have an auto-immune disease…

The least you can do is to have the COMMON COURTESY of washing your hands with that GIANT ECONOMY size alcohol gel bottle’s contents that is sitting two feet from you… even ONCE in the hour that I’m sitting in your waiting room

I DID it!

When I signed up for the half marathon… I was still 5 months away from my RA diagnosis.  It wasn’t that I didn’t hurt, I did, but I chalked it all up to over-do-ing working out or sitting with my knee the wrong way.  < insert self deprecation comments here, I’m still beating myself up for not going to the doctor sooner…>.

I asked my Rheumy very nicely if I could still participate.  Not only did she say it was okay, she encouraged it.  She said that, with RA, unlike Osteo or some other conditions, walking if fantastic, it keeps joints moving and smooshes out the extra “juice” from the joints.

So I pushed on.  I know I didn’t push as hard as I should have, but I kept working.

I’m not one to say I can’t… even worse, NO ONE needs to tell me that I can’t.

So I did.

Saturday we went to the Expo to pick up my bib (and backpack… outstanding!!!) and extra goodies that the booths were giving away… things to eat that give you energy for the most part.  DH bought me a charm that says Austin Marathon Austin Half Marathon and on the back it has 2010… in sterling silver.

Awfully sweet and I wore it the whole race.

DS wanted to be there and help… so he signed up to be one of the “Love Team” volunteers.  He worked the clothing dropoff from 5 am to 8 am.

We got up and ready at 3:30 am… drove into town (35 miles into “town”) and weaseled a parking spot in the garage that I park in for work… funny… the garage wasn’t full and it was exactly 5 blocks from the finish line, 12 blocks from the starting line and 3 blocks from where volunteers signed in and got donuts and coffee and t-shirts.  He usually dresses all in black… black jeans… black band t-shirts… black boots… black hoody… the lime green shirt made quite a difference in how he looks.

This is him way after his 5 – 8 shift was over.  He took the race to heart and made sure he actually smiled at runners and cheered people on and took bags from people with a cheery face. He did manage to eat a couple donuts but he isn’t a coffee kind of kid (and they didn’t have tea)

The race was set to start at 7 am.  We got there for his shift at 4:45 and I walked around the nearly deserted streets taking in what was going on.  I was concerned that there were so few people actually there, but I wasn’t taking into account that everyone actually COULD show up at nearly the same time… and that is exactly what they did… DS was a bit overwhelmed that almost all of the 9000 half marathoners showed up at about 6… or a bit after.

I managed to easily walk into the port-a-potty at 6.  I was going to try again at 6:30… but the lines for the bathrooms were ALL the way across the street… each potty had a line, each line crossed Congress avenue the whole way (FOUR lanes).. it was ridiculous!

There was a nice lady who took this picture as I was standing in the spot I would “take off” from.  It was 37 degrees (which according to the TV stations is the perfect running weather in Austin) by 6.

This street was absolutely packed with runners… 4 lanes wide… and 5 blocks deep.  15,000 people… 9000 in the half marathon.

It was a little depressing standing around all alone in the middle of all of these bodies, all of these people who came to watch… but it meant that I didn’t “need” to have to find a way to make small talk while I talked myself into being ready for this… I guess this was pretty much why I took up walking like this, because it is a way to be alone with my thoughts and to loose myself in my thoughts.  It is my “me” time most of the time… it evolved into time to spend with DH on Sunday walks.

7 am the gun went off.

I didn’t hear it.  5 blocks back… you couldn’t really participate in the excitement that was happening at the starting line.  That is too bad.  They really should put speakers further back the corral.  It would have helped a lot to get into the whole morning.  I guess only the elite runners really matter and really need to be a part of the excitement, but it would have been nice.

By 7:10 am I made it to the starting line (so, I can actually subtract 10 min from my ending time).  It was more of a mosey down through town towards the starting line.  Passing piles of clothes all along the way.  Hoodies… blankets… gloves… these would be picked up and sent to charity.

The mosey turned into a run (jog) as people hit the starting line.

Not me.  I walked every step of the way…. Pissed people off in places because I wouldn’t get out of the way… but it was a FOUR lane street and we had all four lanes and there were HUGE spaces for them to get passed me and there were walkers spread out all across the road, so I don’t feel too horrible about being on their road.  I paid as much as they did for my 3 foot square that moves.

SO we were off (all 15000 of us loonies)

I figured out that Austin has some very interesting companies… like Lucy In Disguise… the building is really neat.

I’m not sure what “other people” do when they are doing these things… but I took the opportunity to look at things that I’ve never seen before… some of the things were things I never passed before, others were things that I never passed this slowly before.

It was great.

I had 3 hours and 30 min to reflect on a lot of things.  There wasn’t a lot of “being still” but there was a lot of reflecting…

Water Stops are wonderful things.  I’m not sure why they only put about 1/4 cup of water in each glass… but I made ample use of at least 2 glasses at each stop.  I also had MAJOR problems just dropping the glasses on the ground… I always made sure that I dropped the glasses in the boxes put there for that purpose.

Oh… and… no, it wasn’t raining.  That was from the water making it onto the ground.

I’m still not really sure what the petroleum jelly on a tongue depressor was for.  I didn’t take any at any of the stops.  Now, I keep thinking I don’t know what I was supposed to do with it if I had taken it.

At water stop 10 they gave out bottles of Power Ade.

At water stop 12 they gave out water and power ade.

once in a while there were random people/groups giving out candies or cookies.

It is amazing how much it helps to just have the smile and friendly hand out even if they “have to”…

This is the obligatory tree picture.  One always seems to find its way into pictures I take.  This one, along Lady Bird Lake was just there when I needed th see something great… something peaceful and lasting…. and by mile 7 finding my center was all I was after.

DS caught up to me at about mile 11.5.

By this time, I was seriously starting to have my doubts about being able to finish.  By this time, I had stretched out several times and my hips and toes were really hurting.

Backwards through the course he comes.  He yells “HI” and falls into step beside me.

He said that lots and lots of people were really happy to see him walking the “wrong way” in his LOVE TEAM t-shirt smiling…

I still don’t think he quite understands exactly what it means when you are out there to see a smiling face… to see someone who even seems to be cheering you on.  I know that none of the people I passed were out there for me personally, but they were out there, and that mattered so much…

from the back side of the finish line looking at those coming behind.

I wasn’t the first one to cross by a LONG shot, but I wasn’t the last one to cross either.

The miracle wasn’t that I finished… it was that I had the courage to start.

I did it in about 3 hours and 30 min real time.  Not quite as quickly as I figured, but I hadn’t planned on the mile 11 hill, either… and I did finish and I made a lot of people proud of me.  More importantly…  I made ME proud of me.

There were times when I doubted that I would EVER do it.

Now… I’m thinking I can do it again.

today… I hurt.

my knees ache like RA ache

my hips hurt like I wasn’t ready for the mile 11.5 hill

I don’t have my medal yet… they ran out before I made the finish line.

I don’t have the T-shirt that fits… the one I got is a small and that is SO not going to fit

both of those last 2 will be remedied…

oh.. and here

Is me… Picture taken at about mile 12 by DS who promised to take pictures.  He did.  He’s a good kid.

Anyone interested in all the pictures… they are on my facebook… friend me… and have a look

Okay, the Pity Party is OVER

Sunday was a half an half kind of day… the walk did me good, which it always does… and the meatloaf went over wonderfully.  It had been years since I had made meatloaf and the LAST time the dog ate it for days.  This time, she got a few of the crumbs (different dog) but it all got eaten and it was a big hit.  I was impressed.  I have already had requests to make another one… which I will probably do before too awfully long.

Monday was a HORRIBLE day.  It was rainy, but that just meant it was gray and wet and that usually is a reason, here, to celebrate, even if it kicks the ouchies up a notch.  Work meant that I “got” to play catch up with all of the things that other people were TOO busy to do (like over communicate to the users that they might have issues  after the maintenance that they did… if you have problems… blah blah blah… so who do they turn to?  the stupid one who they know will drop everything and help them with their problems… can you PLEASE adjust the KICK ME sign so it is at least straight on my back?).  While stuff was running I looked at my two hands laying on the table… big mistake.  That kicked in a massive pity party.

My right hand has lumps and bumps and swollen places that my left hand doesn’t have.  I don’t know if, because the overall swelling has gone down (I”m now convinced that this is likely due to prednisone rather than MTX… but I hope I’m wrong) that I notice it more, or if I’m just noticing it. Whatever the reason, it brought on a bout of depression that feels a lot to me like a HUGE pity party and I really don’t like it.

For about two days it was all I could do to not cry and half the time I spent crying and snapping at everyone.

Today, I’m feeling a little better… and I’m trying really hard to kick the blues out.

DD has her QUACKING neurologist appointment today (he quacked when DS went… I keep hoping that he doesn’t quack with her… but we have a long track record with quacking…. so I don’t have a lot of faith).  This means going in to work a bit late.

Half Marathon is in 3 days.  I’m getting psyched.  It is going to be breezy but the sleet, slimy weather should have blown out by then.

I have one question <WARNING WARNING… female question!!!> for anyone who has been on MTX and noticed… did it change your periods?  Mine, which were like heaven sent ones… 2 days tops, light and barely noticeable before… are not an entire week and heavy flow and annoying.  This is one side affect that I could TOTALLY do without… eesh.

Gallery

Another New Week

It was an incredibly busy week at work (which bespeaks to why I haven’t had the time to post to any great degree…) but now it is Sunday morning… and quiet (I have a giant warm Bichon curled up at … Continue reading