30 Day Chronic Illness Challenge… Day 4… How did family and friends react to “it”

So… I’m trying to figure out the “it” that people are reacting to.  My diagnosis… my situation… my life… This one is kind of tough.  I’m sitting in the chilly (it was in the 40s Fahrenheit this morning) foggy morning … Continue reading

30 Day Chronic Illness Challenge… Day 3… How did I get my diagnosis…

069I knew I couldn’t make it on consecutive days… but this morning is beautiful.  I’m sitting on the porch in the fog and drizzle with a fire going in the chiminea and it’s perfect!!! The wet in the wood is making the fire pop and crackle.  The morning music is astounding to me today.

Okay… so… I probably ought to have read ahead a little.  I guess I kind of answered this one a little.  But… I guess I could answer it a whole lot deeper if I try…

So… I had been hurting for a long time.  My hands… the front half of my feet… my knees off and on… and then the knuckle bump came.  (Nodule… I’m one of the “lucky” 20% who get nodules) and I got scared.  So I went to my PCP and asked.  It took a couple days to see her… it took 20 minutes after the appointment to get into the lab to get the ordered blood work done (She didn’t tell me what she was looking for) and two more days to get the results back (in a phone call from the PA).

That was the official diagnosis.  My Rheumatoid factor was WAY WAY high.

I got sent to the rheumatologist who looked at my hands and feet and said… you have been active for a while.  She sent me for x-rays… which showed I had been active for at least 18 months probably more… and that I already had joint damage.

I “should have come in sooner”

okay… 20-20 hindsight.  woohoo…

But… yeah… that was my diagnosis story.

Nothing overly glamorous.  I would probably have a much more long and convoluted story if I had gone when I started to hurt rather than just chalking it up to my imagination or writing too much or whatever.  I might have had a longer story, a bigger fight, a different reality today.  But I waited long enough that damage was done and there was no denying my reality.  :/

The other co-dependent conditions… those were diagnosed as I went, in the dr’s office.  It was kind of an evolution…

30 day chronic illness challenge… Day 2: How have these illnesses affected your life?

my handsI think it’s kind of weird… today’s prompt… how has it changed my life… I’ve thought about this an awful lot…

I was diagnosed with “forever” stuff just a couple months before my daughter was diagnosed (at 15) with epilepsy.  I had made it far enough through my learning to cope with the idea that I had something that would impact my life for the rest of my life that I was able to REALLY be there for my daughter when she needed someone who understood.  After having dealt with people doubting my actually having things wrong with me my whole life and wanting attention it means that I knew how she was feeling having people doubt her.  Having found out that I’m not crazy and my body really is fighting itself, it meant that, when she started to complain about pain in her back and stomach and she would pale and throw up, I fought with doctors to find out what is wrong.  It means that today she still copes with health issues but it also means that she has found the people who can help her.

It meant that I could recognize, in my son, the signs of sjogrens.  I had a rheumatologist who would listen.  She wasn’t as aggressive in treating him as i wish she had been, but she listened and didn’t say he was too young to be dealing with it.  It means that he’s now fighting his fight and I can help him.

For me… it means I have slowed down.  I have started to think more about my mortality and trying to take a little better care of myself.  It means that I take the opportunity to have an adventure when an adventure presents itself.  It means that I try very hard to make the memories while I can because you never know what will sneak up on you and impact your life.   And I try very hard to help anyone I can to understand this.  Not just understand but to UNDERSTAND.

It means that I think very hard about drinking a can of pop that I haven’t wiped off.
It means that every single time I push the elevator button (especially the buttons where EVERYONE goes… the first floor lobby… the cafeteria floor…) I stop and think and try to push the button with anything that I can that I can either disinfect later or that I will throw away when I get off the elevator.
It means that I think twice about buying a glass of lemonade from one of the kids down the street at their lemonade stand… I think twice… and then I buy it and drink it and make a big fuss anyway… because there are some things that are just worth the risk of an infection, and the looks on their faces and knowing that they will probably remember that they can succeed at lemonade stand are worth it.
It means that I wear fingerless gloves what seems like all the time.
It means that once a week I get a shot in my stomach and have a headache the next day and I get an infusion for 30 minutes once a month.
It means I have very thin hair because methotrexate has caused a significant amount of it to fall out (it’s a chemotherapy drug after all).
It means that I have to think before I do things.  I take into account how much my hands are hurting (about a 7 this morning for some reason) before I pick out the cloths I’m going to wear for the day.  I may have to put on a couple pairs of shoes before I find the pair that doesn’t make my feet hurt worse because they are floofier than normal.  I carry pills and gel with me wherever I go so, if it gets bad, I can fight back.
it means I get tired far easier than I should and when I’m exhausted I hurt almost logarithmically more than when I’m not feeling tired and stressed.
It means I wash my hands about fifty times a day and I sing happy birthday in my head twice every time I wash my hands… and I invest an incredible amount of money on hand cream (and I get to enjoy the smell of hand cream seasonally!)
I have to think more about insurance benefits than I ever dreamed I would ever have to.
I treasure skype calls more than I ever dreamed possible.
I’m way less apt to tolerate bullshit.  I don’t have the time or energy for passive aggressive garbage or for someone who has nothing better to do than to dump on me.

What does it mean to me?  How has it affected my life?  It means that I have a whole new normal.   I’ve learned to treasure people far more than things.  I’ve learned to be gentle with myself whenever I can.  I’ve learned to use my phone as a computer and a camera so I don’t have to carry any more than absolutely necessary (good thing it is about ten times more powerful and versatile than my first computer was) and I am drooling over the Samsung Note 4… I really REALLY wish I were closer to my upgrade date for my phone… I rely so much on technology every day… I become fixated on it.

How has it changed my life.  Some for the better… some not so much.  But it is certainly nothing like it was before.



30 Day Chronic Illness Challenge… Day 1… My Introduction

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So… I did my RA introduction a few days ago. It’s been a REALLY long week this week and I’m feeling it this morning… so I thought I would sit down, slow down, and catch up with myself. So here … Continue reading

Early Morning Frustration

So I’m up.  I slept longer than I should have but not as long as I could have.  It’s been one of those weeks and it is going to be one of those days.  Got up to find squirrel girl somehow in her excitement over learning how to use her software forgot to charge her phone (and she has her presidential luncheon in town today and might actually… you know… need to get hold of someone).  She also forgot that I can’t help proof read her English without all of the information necessary to see what it was supposed to have.  And waking her isn’t working well.

It’s been a long week.

Had my rheumy appointment yesterday.  Turns our that I have sun poisoning on both arms and one spot on my back.  I had a little light burn on my face from the day I got this but nothing really amounting to a burn. The Dr’s PA says it bypasses burn and goes straight to this really nastiness.  And I get to deal with it for… roughly… 6 weeks… or more…

Had my blood work (that is normally drawn every 2 visits) drawn again yesterday to see if the higher than normal liver enzymes was a fluke or if it was actually something to worry about.  The PA assured me that the stomach pains I have been having are not really a Rheumy thing (unless… you know… the liver enzymes are off again and then it might actually be something connected to my MTX) but is a PCP thing and is probably gall bladder but if that is what it is, they just yank it out through one of those three holes in the tummy surgeries anyway so I shouldn’t worry, it won’t be a big huge scar like they used to be… and it isn’t in the right place to be my Appendix….

Well, duh…

My appendix is a 90 min drive down I-80 from here burned in some medical incinerate over three decades ago… it is WAY in the wrong place if it is that.

So… I wait… blood work might be back today… maybe tomorrow… PCP appointment is a week from today.

I’ve been way less inclined to deal with bullshit.  Not that I’m overly inclined anyway, but it is making me way more short with some people than I should be.  Or maybe it is just making me way less tolerant of passive aggressive shit.  I’m not sure.  Whatever it is, I’m hoping that today is a good day.

Here’s My Story and I’m kind of stuck with it

Okay… so… I guess I have never really sat down and really told my whole story. I’ve alluded to a lot of it. I’ve talked about some of it. But my whole story? Probably not so much.

So… I guess… here it goes…

I learned a LONG time ago that it doesn’t pay to complain when you don’t feel good. I hand the flu with a fever of 103 and was told I didn’t know how to read a thermometer (back in the day when they were mercury thermometers) and I was looking for attention. Until someone else bothered to look and I had the flu and a 103 degree fever. I was attention seeking again when I was a freshman in high school when I had a pain in my right lower abdomen. Because I could jump off of the exam table and land on my left foot without any weight on my right foot, I didn’t have appendicitis and I was looking for attention… until 2 weeks later when my white blood count (which they FINALLY took) was off the chart and when they did a laparoscopy my appendix was four inches long and ready to burst.

People don’t want to know if you don’t feel good. It interferes with their lives and you really don’t NEED any attention anyway. I figured the same thing out several years later when I ran my finger through an industrial sewing machine at the pants factory where I worked and the needle broke off in my finger and I needed x-rays. I was sent for x-rays and had to walk home to get the car to drive myself because I was really only looking for attention and it was probably only a scratch anyway.

I learned. Attention is very much not worth it. You suck it up princess and you just don’t say anything.

It should not come as much of a surprise that fifteen years later when I started to not feel right… to ache in not so great ways I just pretty much ignored it. In my defense, I had started working out at the gym and I had taken up running and it was really very easy for me to chalk it up to over doing things. I figured it was plantar fasciitis. I figured I was over doing it. I figured I should suck it up princess and just keep pushing on. So I did.

I had times when my feet swelled up enough that I had to loosen my Teva sandals. I had two weeks where I nearly couldn’t walk at all because my knee swelled so badly that I could barely bend it sufficiently to ride in the car. It hurt so bad I was wearing Crocs to work (NOT popular but at least they were my black ones). Walking three blocks took an hour and nearly made me throw up. When I rode in the car long distances, my knees screamed. When we went to Disney in 2009 my feet hurt so badly that I couldn’t make it through the whole day at the parks. I looked for puddles to soak my feet in. I loosened my Tevas. I was told I was pushing too hard in my running. I was down to walking fast and I wasn’t even doing that when we were at Disney. I was, at this point, training for my first Austin Half Marathon. I needed to train. I could barely walk.

But the “bring me to tears and make me want to throw up” pain always passed. I assumed it really was just doing too much. I had nearly given writing up entirely by this point because my hands ached all the time and I was getting tendonitis in my shoulder and my elbow routinely. I pretty much hung up crocheting for a while. I just assumed it was my new normal. Not something that I was proud of but it was what it was. I kept walking… kept training… and was exhausted by evening.

In the fall of 2009 I noticed a bump on the middle finger of my left hand. It was about the size of a pea. It was tender but not painful. It wouldn’t go away. I was hoping it was a cyst. I googled all kinds of ways (I was KILLER in my online retrieval class at Pitt) trying to figure out what it might be. One website I found said that if it was a cyst and you hit it hard with a book (about the size of a hardback Webster’s Dictionary) it would probably burst and you would be great.

No, we didn’t try it. My son talked me out of it. I woosed out.

When it stayed for two weeks, I sucked it up and went to the doctor.

The doctor I went to was not the normal one I saw. Dr Holly was out. I saw her partner. She poked and prodded the bump. She looked at my fingers and toes. She asked questions. She sent me for blood work.

Three days later, while I was at work, I got the phone call that I will never forget. I found out that my Rheumatoid factor was horribly high. I needed to make an appointment with a Rheumatologist. I was very VERY positive for Rheumatoid Arthritis and I needed to get started on treatment to try to control it as soon as possible.

So, what did I do? I googled it. NOT a good idea. DO NOT DO THAT!!! The pictures are not pretty. Worse, I realized that the great great aunt that terrified me when I was a kid had hands like the pictures. I’m sitting at work googling pictures trying not to go completely crazy. I went in the bathroom (into the BIG stall so I could sit on the floor) and cried and cried and cried.

I made the appointment and talked to the Rheumy in Austin. I miss her a lot. She was always there for my appointments. She didn’t bullshit me. She told me straight.

I was pretty advanced. She sent me for tests. X-rays… blood work… I had had active RA for at least 18 months, maybe 2 years or more. I already have some joint damage. My hands don’t look like the pictures on Google… but there is wearing away of the joints. I started Methotrexate (pills that made me dizzy, sleepy and puke every week) and I made up my mind that I may have RA, but RA doesn’t have me.

About a month after I found out that I have a forever condition, I got another phone call that I will never forget. My little girl was found on the ground in the parking lot at the high school after an apparent seizure. I had gotten to where I was fighting back with MY fight only to be presented with the fact that she has Epilepsy… another forever condition. Was my RA there to prepare me for the new adventures? It gave me the perspective to understand her new normal… her forever fight.

I walked my first half marathon. My beautiful son walked me in the last mile. I hurt so bad by the time I crossed the finish line I wanted to cry. My hips were screaming. It felt like hot ground glass in every joint from my waist down. I had to call off work the next day because I couldn’t walk. But I did it. I will never forget seeing him walking backwards through the course to meet me. He will probably never know how much that has meant to me… or how close I came to giving up by the time he found me.

My adventure has been interesting. It has taught me a lot. I’ve learned that I’m stronger than I thought I was. I’ve learned that stubborn determination has made me the hero of both of my kids… a fact that chokes me up ALL the time.

I’ve finished three Austin half marathons (two my son walked me to nearly the finish line, nearly in tears and one… despite having the flu… he hung my medal around my neck) and one Disney half marathon… and I’m working my way towards the Santa Shuffle in December of this year. I’ve gone from pills to shots of methotrexate so I don’t puke every week. I have tried multiple biologics and I’m now on Orencia and roughly every 4 weeks I go and have my infusion.

I’ve moved across the country.
I miss my son
I miss my Austin Rheumy
I’ve realized that many people I work with are fighting the same fight I am.
I’ve realized that I can make a difference, even if it is a small difference, in people’s lives. I’m certainly not sure how I am an inspiration, but I’m starting to just accept that I am.

And here I am, almost exactly five years after I was diagnosed looking back at my adventure. I’m working on a geek book, and an RA book. I’m back to writing poetry and crocheting and feeling nearly human most days. I don’t take anything for granted any more. I’m strong for my family when I have to be and I fall apart when I just can’t not fall apart.

I’m glad I can be the voice of sanity for people. I’m glad I can prove that you don’t have to crawl under a rock and not live your life so people who hear the news… You Have RA… don’t fall into the freak out pit that I fell into. I hope I can keep being not only that, but that I can keep being my kids’ hero… and to voice of reason when people tell them that it is all in their heads.

I know better.

So, why am I telling you all this?  Why now, after all this time?  What’s the point?  The point is, I’m a spoonie.  If you don’t know what that is, you can read about the Spoon Theory of Pain and realize what it is like to be a spoonie.  I wear a spoon necklace, a spoon bracelet and two spoon rings to remind myself that I need to save my spoons.  I need to be gentle with myself and save enough of me to get me through the day.  Some days that isn’t easy.  Some days it is surprisingly easy.  Mostly, I live in the moment because I only know what this moment is bringing.

No it doesn’t always work.

Ironically, the wearing of the spoons has brought me more attention to the reason I wear them and explaining my RA.  I have brought attention of the nurses at the infusion center… to the intern where I work… to several people who just wanted to know why I look like such a dweeb wearing spoons.  It’s also launched several conversation on why my son periodically jacks me spoons if they are particularly interesting.  I’ve grown quite a collection of interesting spoons.  They don’t help when I feel really really awful, but they remind me to try to same a little time for me.

And here I am, putting words and feelings to “paper” once again… this time so others know my story and maybe will tell theirs.  I’m trying to join The Elephant In The Rheum’s Spoopie Story Swap… because it matters.  Because we are all in this together and no one can have too much support…. or too big a voice to spread the information.




Labor Day

So… Herman is noisily drinking water (sometimes I wish a cat would drink as quietly as a horse does) from the dish, Peanut is hunting stray food that might have hidden itself somewhere (even though we all know it hasn’t) and the world, otherwise, is disturbingly quiet.

It’s Labor Day in the US.  A Monday holiday.  The beginning of what everything thinks of as fall even though it’s really not.

Today is a fair day.  Canfield Fair.  I haven’t been there since my ‘little boy’ was a little boy.  Today is going to be an awesome day and a very hard day for me.  I miss him a lot.  I will miss him a lot today.  I’m really proud of him for the path he is walking, but sometimes I wish that path was a little nearer.  When we were last at the fair, he was lifted high by Tony The Tiger and rode in a stroller.  Nothing like the 6 foot tall young man who stands on his own two feet.

His path is overgrown in places, in places the brambles have crowded so near that they bite deep into his body and his soul.  But it is a shaded path.  Cool and tree lined with just a wee bit of the rain to nurture his soul.  And he walks it hand in hand with his love.  Two roads diverged in a yellow wood….

It’s been a good weekend.  It’s been a hard weekend.

I’m looking forward to today.  Root Beer and laughter.  I will take a little extra napproxin because I can feel the weeks rolling by towards infusion day.  And I will carry an extra class ring with me…. because it helps.


Down Time

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The last weekend of summer.  Sitting in the rocking chair looking out the sliding glass door at the back yard.  The rain blows through, the sun creeps out, and the rain blows through again. Yesterday I got to see my … Continue reading

Autumn: cooler weather, back to school, colds and flu

It’s back to school season.  Yellow school buses with red and yellow lights have joined the morning queues.  Soon the few leaves that have started to tint their way to autumn colors will be joined by thousands of their brothers and sisters… red, yellow, orange, and brown.  Now that I’m back in the north east, I’m very much looking forward to fall colors.

With the changing seasons, changing ways to cope.  I’ve already broken out my fingerless gloves and am looking forward to this season’s batch of them to hit the stores.  It’s interesting to see how technology has changed them.

I’ve added disinfecting wipes to my desk at work.  With heaven knows how many different fingers pushing how many different buttons on the elevator, door knobs, etc… I’ve taken to using more and more of them.  With kids being back to school and in closer proximity to other kids,  colds will start making the rounds all too soon.

I’ve started seeing things about bolstering your immune system on TV to help us to stay healthy and even touted on facebook as a way to help with RA symptoms.  Forgive me here, but… the last I checked… the reason that our bodies are pissed off at us is that our immune system is entirely too bolstered, in fact it is in overdrive and it is attacking us from the inside out.  I’m not sure trying to bolster it would be a great thing.  And many of us are taking drugs designed to dumb down our immune system.  We are taking disease-modifying antirheumatic drugs (DMARDS) at the very least and many of us are taking biologics in an attempt to trick our immune system into not attacking our bodies.

We need to be mindful, but not paralyzed by, those germs, viruses and bacterium that are likely to be waiting out there where you least expect them.  Avoid when you can, disinfect when you must.  Enjoy the season.

On Making “one of the top” RA blogs of 2014

Okay, so I’ve started to try to take myself a little more seriously. Granted, I probably should have done this a WHILE ago. Granted, it’s still probably enough..

But I’m listening to the advice I’m getting and I’m trying…

And this morning, in an admittedly vain attempt to see if what I was doing was making any difference, I googled <I still can’t get it through my head that googled is a verb> a random RA string.  I didn’t try to trick google.  I didn’t want to try to find a way to MAKE it land, somehow, on my page. I just wanted to see.

I googled Rheumatoid Arthritis Blog.  NOT surprisingly Healthline came up because they have a lot of good information on a wide variety of health related subjects.  What DID surprise me was the fact that in their “best of” list for this year, I’m there.  I’m there with the ones to whom I pay homage because of their following and their content.  I never dreamed that I would find myself among the listings.  To be honest, when I went hunting through the listings, I was trying to figure out what other blogs there are out there that I might have missed and how I can try to figure out how to make this more useful.

And there I was.  Nestled in among some that I frequent rather regularly and some that I’m going to start haunting myself.  You can never have too much information, too many different perspectives, or too much support.

I feel kind of lame that it matters to me this morning.  I have never cared an awful lot about popularity contests or about awards in general.  But it matters to me today.  And in a way, I realize, that maybe it means that I’m making a difference.  That maybe because I’m here someone won’t freak as  badly when they get the news… maybe I really can help.

I KNOW this has nothing to do with the attempts to have this quiet little hamlet in the nearly infinite back roads of the internet show up on a few more of the maps without having to dig and dig and dig.  THIS has been there since May.

But it still made me smile, just a little (okay, okay… I think it was probably closer to what was termed a shit eating grin when I was a kid… why anyone would eat shit and grin, is WAY beyond me… but it is the phrase that has always stuck with me).

Kim, at Chasing Normal, keeps prodding me that I need to work harder at making a name for myself, that I help, that I can make a difference.  So… I will keep trying to figure out how to work at that part of it… and I will grin just a little.

Presented by: Healthline


Updated: August 23, 2014
Author: Figment of Fitness
Keep the dreams alive