My grrrrrr face

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Yes, this is my grr face.  Today is a BAD pain day.  In hindsight, I can see how this all transpired.  The “four seasons in one week” weather is contributing.  I have been running around trying to get a job, which I may have succeeded in doing.  I am emotionally spent.  I went on a date TWICE this week.  The second one probably did me in.

It was 34 degrees on the night of date number two.  And we went to an outdoor concert.  They have outdoor events nearly year round in Austin  because it rarely dips below freezing.  But we pick the one night in the past two weeks where it WAS near freezing to go to an outdoor show.  Figures.

Oh and we sat in metal chairs.  That did wonders for my fibro.

But we had fun.  We saw the Spazmatics at Cedar Street and they were fantastic.  Although I was born in the early 80s and wasn’t really old enough to get into the music scene, I knew all the songs and loved the energy.  Definitely what I needed.  A night of fun.  A true date night.  Absolutely loved it.

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So it is all catching up to me.  And since I’ve been rapidly titrating Topamax, I’m dizzy as well.  And I spent most of yesterday in the car running from my potential new employer to a drug screening, to the car dealership, to the store, to the mailbox place, to a friend’s house to scouts.  People who don’t experience what we experience don’t understand how awfully draining just driving can be.

This morning I woke up and literally couldn’t move.  My hips and low back were frozen.  Every time I tried to move, even a little, I gasped.  It was like my body was cut in half.  My husband, who just returned from his night shift, got Sunshine ready and off to school.

There are things that I HAVE to do today.  Like laundry.  I have no clue what Sunshine wore to school today.  If it matches, if it’s clean.  We are to that point in the laundry cycle where I MUST do laundry or we will be wearing bathing suits.  So that is adding to the misery.

My parent’s dogs are collaborating to make me insane by whining to go outside every two minutes.  They can’t coordinate their peeing/pooping/barking and the wind schedule.  So I’m getting up and down constantly.  Again, this is something that someone who doesn’t have these issues will never understand.  The whole act of hoisting my screaming body up from a seated or lying down position is extremely excruciating.  The same with getting back into said position.  So much so that I spent at least a half an hour pacing just to avoid the frequent up and down.

I can’t find my heating pad.  I can’t find my biofreeze.  I took an extra hot shower this morning…getting into the tub was fun.  I already took tramadol and I don’t want to take another because I do have to drive to pick up Sunshine this afternoon.  I have been stretching, but today, that is seeming to make it worse.  I have already warned my mother that I will need her assistance this afternoon.

And I’m not eating.  It is doing wonders for shedding of the steroid weight, but it might be contributing to this entire feeling like shit mess.  I think its the Topamax and the emotional upheaval.  I’ve been living on Fruity Pebbles and cottage cheese for the past few days.  And I pretty much have no desire to eat anything else.  Not even the Girl Scout cookies I have stashed away.

I keep telling myself that I can hold out another month or two.  The weather will improve.  Usually when it gets into March, we won’t see these roller coaster “four seasons in a week” periods.  I will hopefully get hired in the next week and can get back to work.  We can move out.  That will do wonders for my health.

As Sunshine grows, she is amazingly more supportive.  She hasn’t known anything else than a chronically ill mom.  She knows that I don’t prefer this.  She knows that when I feel well enough, we do the park, we do the mall, we play, we giggle, we have fun.  But on days like today, sometimes we just snuggle under the covers.  She gives me extra hugs.  She brings her stuffed animals to snuggle me as well.

I am eternally grateful to her Girl Scout troop.  Her leader and several of the moms know my issues.  They are great about helping out with transportation and play dates and getting her to and from events when I can’t.

So today sucks.  It will be 80 degrees tomorrow, so it will be better.  But then it is supposed to get cold and rainy again next week.  I honestly prefer the searing heat.  At least it is consistent.

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Cows

I live in Texas.  Where the cows probably outnumber the people.  Which is staggering if you consider the booming population of cities such as Houston, Dallas, San Antonio and now Austin.

I live in Round Rock.  It is not in the sticks.  It is about 20 minutes north of Austin.  Population of 100,000 give or take the masses that move here everyday.  It is the headquarters of Dell.  The people that make the computers.  The growth here has been phenomenal.  Probably 15 years ago, the exact spot I’m currently sitting in was a ranch.  Which leads me to the point of this story.

For the past three weeks or so, there has been a group of rogue cows (longhorns, actually) who have been jumping the barbed wire fence across the street and roaming the neighborhood.

Now, I grew up in Pennsylvania.  Cows aren’t a novel idea.  But You had to drive 30 minutes outside a populated area to find one.

This area I live in is so populated that there is five elementary schools within a five mile radius.  All filled to capacity.

So this escaped longhorn thing really provided some entertainment.

Here are the pics:

This is the ringleader, Beau.  He is always forefront in any escape.

This is the ringleader, Beau. He is always forefront in any escape.

I guess the grass IS greener on the other side...

I guess the grass IS greener on the other side…

Sunshine and my Dad set up in the bed of his truck to watch the show

Sunshine and my Dad set up in the bed of his truck to watch the show

And here they come prancing down the street

And here they come prancing down the street

So this has been my distraction for the past couple of weeks.  Hope you enjoyed my cow tales…

 

 

 

Migraine city

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Can you guess which is the worst for me right now?

I have had migraines since puberty, probably before.  I have taken almost every med under the sun.  Treximet works, usually within 30 minutes, to quell the war within my brain.  But Treximet is expensive.  My cost, even with insurance, is $64 for 9 pills.  I am currently having 4+ migraines a week, so that doesn’t exactly work out in my favor.

I’ve been supplementing with Excedrine migraine, but I’m EXTREMELY drug sensitive, and that small amount of caffeine (as low as the amount in a cup of coffee!) is enough to keep me up at night.  Which is why I don’t drink coffee.  That and the smell.

I have started back on Topamax, and as the nurse that I am, independently increased my dosage.  No horrible side effects yet.  I just want the pain in my head to end.

The nausea is enough to keep me from eating actual foods, which is slightly beneficial because it keeps me from seeing certain people at meal times.  Yes, that situation has not gotten any better, despite my best efforts to duck and cover.  I truly feel that my relationship with my mother is beyond repair.  Don’t think I can ever forget the evil she has spewed at me over the last few months.  It still hurts, but my shell is growing back.  Tougher and thicker than ever.

The one truly awful side effect of this migraine nonsense is that I haven’t been able to fully enjoy Valentine’s Day.  My husband bought me chocolates, and I can’t eat them.  Major, major trigger.  Boo.

Good news?  I should be hearing back from a prospective employer sometime soon.  I’m hearing from a friend that works there that it is a pretty good bet that I’ll be hired.  The sooner I start, the sooner I can move out.

Maybe that will take care of my number one trigger:  stress.

Awards!!

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I haven’t been keeping up with the awards lately.  A few very nice people nominated me last fall, but I never got around to fulfilling the criteria due to my issues.  But today a gentleman at one of my favorite blogs sent me the Liebster award, and I happened to be sitting in front of the computer when he posted it.

This blog was one of the first I came across when I was possibly? diagnosed with sarcoidosis.  Just the title, Life With Sarcoidosis, pretty much explains it all.  His posts are informative and funny.  So thank you, Basil.

The following blogs that I nominate are:

Lethargic Smiles– a young woman living with a rare disease

The Power of Silence– a blog about healing from childhood sexual abuse

Decimawho – a blog about living with Lyme disease

Healing From Complex Trauma and PTSD – the name basically explains it

And to answer the questions:

1. How long have you been blogging?

18 months

2. Who do you write for? Yourself or an audience or both?

I basically write for myself.  Handwriting is so much more difficult with the fibro.  Typing is much faster.  But as a nurse I feel it is my duty to share my experiences and health knowledge.  

3. How has blogging influenced your life?

It helps me see perspective.  I can go to posts a year ago and see how much better I am doing.  I have “met” so many people from all over who are struggling with similar issues who offer support and it is amazing.  With my family, although it causes some problems, I truly think that they never gave my particular point of view much thought before seeing it written in black and white.  So it is definitely a beneficial thing.

4. Do you believe purpose is given or made?

Given.  I’ve been drawn to nursing for my entire life.  And I have to believe that I’ve been “gifted” with this chronic illness in order to make me a more compassionate nurse.

5. Mac or PC?
PC.  

6. If you could travel anywhere, where would it be?
Europe.  Particularly Italy, France.

7. What is your favorite film?
I really can’t narrow it down.  I love comedies, I love the Daniel Craig James Bond movies, superhero movies.  Lately I’ve been watching “The Avengers” repeatedly because it’s on Amazon Prime

8. What is truth?
What you know in your heart is right.

9. A perfect world to you is…?
No illness?  I don’t know.  A place where everyone is responsible for themselves and has the ability to empathize with others.

10. What advice would you give to others bloggers?
Who cares what others think.  Write your world.  Your perspective.  It’s your blog.

 

Suit of armor

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Certain people in this household do not like the way they are portrayed in this blog.

Oh well.

This is my outlet.  I can’t afford therapy right now.  I’m sick, I’m in the house most of the time.  These are my personal memories so I can look back on a tough time in my life and realize how strong I am for surviving.

Just because I am in someone’s debt it does not mean that they have the right to abuse me and my family.

If you don’t like my perspective on your behavior, change it.  Period.

And if my musings and recollections offend you, try apologizing.  Try looking at your own behavior.  Hell, try professional help.

I will not take down this blog.  I will not be cowed into accepting the abuse because I have no option.  Despite my health, despite our issues, both me and my husband are doing all that we can to be independent.

And when that independence comes, some changes to relationship structures will come as well.  I will not have to tolerate the emotional and psychological abuse.

Think what you will, this is my personal space.  Writing in a journal or a diary doesn’t have the same affect.  I can’t get the support from 100+ readers when I write in my journal.  And actual writing makes my hands hurt.

This stance may make me homeless.  I have friends, I have other family.  Those constant threats do not bother me.

What bothers me is the games played for the affection of my daughter.  She is confused.  She is conflicted.  I see it in her clingy behavior, her demand to be with me at all times.  She asks me everyday to move out.  It’s heartbreaking.

So I will continue to add to my suit of armor.  I am one strong woman.

It’s a full time job…

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And no, not one that actually pays me.  I’m talking about trying to get my medical issues paid for even when I have insurance.

My husband has United Healthcare.  And I am thankful to finally have insurance, but the hoops I have to jump through to get anything paid for are absolute insanity.

He has an HRA, which I am slowly figuring out.  They basically put money aside from his company (not just the FSA, I’ll get to that in a second) to pay the deductible.  Half of the deductible.  No copays until the deductible is satisfied.  My deductible is $3,600.  But I’m halfway there on February 1st.

But trying to get the HRA to reimburse ME for out of pocket expenses is like pulling teeth.  I submitted one bill in the first week of January.  They said they lost it.  I submitted it again the following week, they said that they couldn’t read my name on it.  They actually told me to take a pen and go over the name and amount on the receipt so that they can see it better.  FML.

So I am trying to resubmit right now, have been for the past week, and it is either their site being down, or something wrong with the settings on my computer, because it won’t upload.  But I can upload things just fine to other sites, including ADP (that’s another headache).

I have even toyed around with the settings on both this computer and my own laptop.  Nothing will upload.  So I will go the fax route.  But they don’t understand that not everyone has a fax machine, and to get to one i.e. Kinkos or a mailbox place, entails a chronically ill person getting out of the house and physically making it to said fax machine. Fuck.

Now ADP.  I hate them.  With a passion.  I have used the brand new FSA card to try and pay for this shit.  And they promptly cut it off after the first transaction.  And they won’t just take a regular receipt.  It needs to be a “detailed” receipt.  But at least their site lets me upload.  It just takes forever to go through their system.  So maybe I’ll get access to the money my husband already has set aside for us to use in the near future.

And its not like I actually need this money or anything.  I just have thousands of dollars sitting around to pay these out of pocket expenses.

So I am patiently waiting for the mailman to get here with my husband’s paycheck so I don’t have to be relying on Sunshine’s cookie money to keep gas in the tank.

That’s another headache too.  My husband works for a multi-billion dollar international company.  He has been working his ass off since he got this job, on night shift no less.  He volunteers for overtime.  Yet he has had not one paycheck that wasn’t completely fucked up.  And it is not just him.  All of his friends have had issues with their pay for MONTHS.

He has been working there since the end of October.  He has submitted his forms for direct deposit FOUR TIMES.  FOUR FUCKING TIMES.  And yet it has not gone through.  He used his PTO to go to Delaware last month.  His first paycheck when he got back did not include his PTO.  That was fun.  Nothing like expecting a paycheck for a thousand dollars and getting one for $400.  There was also the time that they mailed him a paycheck, and then stopped payment on the check for no reason.  Right now, his company owes us like $300 in overdraft fees.

This last paycheck, they shorted not just his overtime, but his shift differential as well.  And the HR people at his company are complete assholes.  I mean the ones at his physical worksite, corporate is fantastic.  But these assholes act like they couldn’t be bothered to actually do their jobs.  They act like them not paying him is none of their concern.  And because they are only there from 8-5, and his shift is 6p-6a, he rarely has the opportunity to see them with his issues.  And no one will talk to me.

And I am still on the job hunt.  But I got some bad health news today, so that might be stalled.

I had a colonoscopy/endoscopy done on Monday. There is “inflammation” in my stomach and intestine, but they don’t know what is causing it.  I have to wait for the pathology report.

My pain has been just awful.  My joints are starting to swell and I can feel the warmth and see some of the redness.  So I saw the rheumatologist yesterday.  She is VERY concerned about the GI stuff.  She told me that just based on feeling my joints, they are inflamed and swollen.  So she got xrays of my hands again and drew 6 tubes of blood to see what is going on.

On the positive side, maybe this will clear up what is actually going on with me.  Maybe the biopsy from my gut can finally tell them if it is sarcoid or not.  Maybe my blood will come back positive for something else other than just an elevated lysozyme level.  Not that I’m hoping for another diagnosis, I just want a CLEAR diagnosis.  Something that says “yes, you have this disease, and this is how to treat it”.

Ugh.  Off to apply for more jobs.  That alone is another full time job.  “No, we won’t accept your resume, you have to list every single employer you have had for the past 10 years, their address, their phone numbers and your supervisors that probably aren’t there anymore”.  And given that people with chronic illness tend to change jobs or have holes in their employment history, this is a fun task.

I’m pretty sure I have lost out on three jobs right now because I answered truthfully when they asked “and why did you leave your last job?”  I said “because of acute illness”.  I specified “acute” because that is different from “chronic” and I already learned a long time ago to keep the fibro under wraps.  So now I’m going to start lying.  “Oh, I didn’t feel like working anymore” and keep this entire fiasco under wraps.  I just feel so wrong about it.  I don’t like concealing the truth, and if someone is going to invest time and money to train me, I don’t want to come to them a month later and say “I need to take some time off because I’m sick again”.

And these aren’t even full time jobs.  I’m specifically looking into PRN jobs.  In the  nursing world, that means “as needed”.  Most of these jobs ask for a set schedule, but you aren’t “forced” to work 12 hour shifts or weekends.  They usually don’t come with  benefits, but I don’t need them.  This was my plan BEFORE the autoimmune diagnosis.  To go PRN once my husband found a job with benefits.  Something flexible so that I can work more when I’m healthy and bow out when I’m not.  It’s not an issue of not wanting to work.  I have been sick long enough to know that I CANNOT work full time, unless it is something so benign and easy that I don’t move much.  Good luck finding that as a nurse.

So if anyone has any ideas on any of this, how to navigate this insurance nightmare, where I can work, give me a clue.  I’m very frustrated right now with this state of affairs, not to mention my living situation.  Sorry for the rant.  Thank you for reading.