E: Exercise



Yes, exercise is good for me.  But I pretty much hate it.  I am not one of these fitness nuts.  I have never been athletic.  I have always been a klutz.  But I do know that it helps what is wrong with me, and that sitting on the couch isn’t good for anyone.

But through experience, I have learned that going hard is not good for my body.  I have to start low and go slow.  I have to do low impact.  Even when I’m feeling better I have to watch that I don’t overdo it because I will feel worse.  Because then I won’t walk for days.

Yoga is good for fibro and autoimmune.  Walking is good.  Swimming is good.  Boxing is not good.  Neither is running.  Even the elliptical at the gym is way too high impact for me.  I have learned this from experience.  Painful experience.

I do have a goal of learning krav maga one day, but that is far off.  I know that I have to build up my body before I can even entertain that idea.

But it is spring.  It is a time of renewal.  And hopefully after the winter that never ended I will be back to yoga.


Making paper

It feels so good to get paid.

We are by no means out of our situation.  But seeing that check with my name on it with a decent amount attached to it is so fulfilling right now.  That entire check is going into savings.

Right now we are looking at the end of April for the move.  We want to be sure to have all of our bases covered.  I’m not even looking at places until we have a decent amount in savings to put down on a place.

The real estate market here in the Austin area is phenomenal.  Buy or rent, places are only on the market for less than a week before they are snatched up.  So I want to make sure I have all the little duckies in a row before I look and find something I like.  I don’t want to be disappointed.

Work isn’t horrific.  I’m tired.  I’m trying to rest.  But I’m so anxious that I’m offering to do ANYTHING to make myself valuable.  I’ve been on call this week, I’m doing call for a few weekends in April.  I’m volunteering to do marketing, chart review, clean the stock room, anything to get hours.

It just feels good to be productive again.  To contribute.  I have never been one to want to rely on someone else for my well being.  Ever.  One thing my parents (especially my mom) drilled into my head as a teenager was that I needed to get an education to get a good job so that I could support myself.  To never rely on someone else.  I never knew how much that advice would come in handy at the end of my first marriage.

So these past few years of relying on others have really torn me down emotionally.  For someone that makes a living…for someone who’s calling is taking care of others, being the one who needs to be taken care of is a real mindfuck.  It is guilttrippy.  I know those aren’t words but that is how I feel.

I like money…

Happy birthday to ME!!

I am officially one year older.

As one with chronic illness, and especially as a hospice nurse, it is important to celebrate these little milestones.

I am off work today (and tomorrow, as I am going to do the whole SXSW experience tonight).  I will spend today with my munchkin and hubby.

Despite our differences, my mom always cooks me a birthday dinner.  This year it will be chicken friend chicken with mashed potatoes and gravy, green beans and cheddar biscuits and chocolate cake.  That will be on Sunday.

I don’t really “WANT” anything for my birthday.  I grew out of that a long time ago.  I just want to spend time with my husband and daughter.

Never thought I’d be this happy to be celebrating 32….


Mr. Mom

It is spring break.  In this part of Texas, at least, most of the schools take the entire week off, all at the same time.  All K-12 and colleges are usually off.  FUN!!

Since I started my new job last week, I can’t ask for the week off, so my wonderful husband is staying at home this week with Sunshine.

And it has been AMAZING.

He has been taking her to the park, building block and Lego cities with her and even made a movie of her Barbies living in the dream house.

Monday I came home to an immaculate house.  I’m talking floors, kitchen, bedrooms, bathroom, all clean.  These are things that take me DAYS to accomplish.

I am so fortunate to have him.  He is able to do the things I cannot.  I can’t do much of the physical things.  I can’t run around in the park for two hours.  I very rarely can get down on the floor with Sunshine and build.  I can do the Legos, but my hands hurt if I do it for too long.  And getting back into work is exhausting me.

So I am eternally grateful.  I know I am a very lucky woman.  Not only have I found a man that loves me for me, he understands my illness.  He supports me in so many ways.  He doesn’t enable.  He uses the right amount of encouragement to push me to be healthier, but on my own terms.  He has educated himself on my illnesses and I rarely, if ever, have heard any of the hurtful “get over it” speech from him.  He understands why I can’t do certain things, and if he doesn’t understand, he asks.

So, thank you, my love.  This journey is so much better with you along for the ride.



Gainfully employed

I started back to work today.  A permanent job with permanent hours.  Its pretty much everything I was holding out for…hospice…part-time…flexible hours..in a territory close to my house.  I’m anticipating it going well.

The next week or so will be orientation.  I sat in front of a computer screen today and did policy and procedure modules. I’ll get more of that the rest of this week interspersed with meetings.  Next week I’ll be out in the field with one of my nurse friends that I used to work with at another hospice.  She put in a good word for me at this job.

I’m just anxious to be helping people again.  I know it is hard to explain to people who aren’t in this profession, but I miss it.  I miss the human interaction.  I miss listening to people, helping them solve problems, educating them.  I truly love being a nurse.

I didn’t sleep well last night, I’m chalking it up to nerves.  So some of the modules were somnolence inducing.  Tomorrow I get to meet more of the team.  I’m anxious to see how things work with this company.

I’ve mapped out the paydays and we are looking at moving mid-April.  It can’t come soon enough.

The pain has subsided with the rise in temperature.  Yesterday was BRUTAL.  Ice is not my friend.  I live here for a few reasons.  One of them being so I don’t have to deal with the total bullshit called winter.  This was my backyard yesterday morning:


We used that grill a few days before…in 80 degree weather


I am soooooo looking forward to warm weather.  I don’t mind the heat.  I may occasionally complain when it gets into the triple digits, but I definitely prefer it to this crap.

SXSW starts this weekend.  I will be down there next Thursday night (my birthday) in hopes of feeling “cool” and “trendy”.  I didn’t get to go last year because of my health, so I’m looking forward to it.  I think its hilarious the things that I do now in my 30s that I didn’t get to do in my 20s.  Maybe its because my husband in my 30s is much more fun..

Very happy to be among the productive, contributing segment of society again.  Its hard to explain how this feels to someone who has never experienced it.  Even though I was (still am) sick, not being able to support myself, having to rely on others is a horrible feeling.  Although I have a wonderful husband who has never ever made me feel at fault or responsible for the situation we are in, it still sucks.  Seeing him work so hard at TWO jobs, one on night shift, just makes it worse.

So hopefully after a few weeks he can cut back, and we can get back on our feet and our situation can change.

Very optimistic right now.










My grrrrrr face


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.


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.


It’s a full time job…


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.


Day 26

Share:  A difficult time in your life

I read this title and started laughing to myself.  This entire blog was created because of a difficult time in my life.  It’s getting better, slowly, but this is probably the most stressful it has been.

I’ll update instead:

I survived my trip to the east coast.  Yes, it was cold, but apparently we got out just in time to avoid the polar vortex (of doom). I got to see my bonus son and spent some time with him.  That was awesome.  His mom behaved, mostly.  I spent some lovely time with my husband’s family.  They are so warm and welcoming.  A bit different from my current situation with MY family.

But the traveling and the weather got to me. And I needed two days to recover when I got back to Texas.

Things with my mom were worse when we got back, however.  I won’t go into details.  Apparently I’m a horrible mother.

Health wise, my eyes have inflammation in them, but not to the level he wants to treat right now.  My cataract isn’t getting worse.  So good news.

But the reflux and bleeding in my stomach is pretty bad.  I am scheduled for a scope (both ends) next week.  Fun times.

My pain from fibro has increased.  I think its the stress.  My joints in my elbows, hands, hips and ankles are killing me. I am supposed to see the rheumatologist sometime this spring, if I can wait that long.  I’m going to have her run my ANA again.

And the job search has begun in earnest.  I’ve had two interviews so far.  I’m hoping to hear back from them soon.  It is difficult trying to find a job in my industry that can go along with my illness.  I’m honest about what I went through.  I don’t want there to be any surprises if I take a job and my eyes get worse.  I’m mainly looking for part-time, something that isn’t intense or requires a lot of travel or being on my feet.  Good luck finding that nursing position.  If we get a new car, which might be happening fairly soon, I can return to hospice part time.  Fingers crossed.

Sunshine is amazing.  She just got an awesome report card.  She’s selling Girl Scout cookies (anyone want some?) and she is such a good little businesswoman.  She was taking orders from her classmates.  I had to explain to her that their parents probably need to order the cookies, since the kids aren’t carrying cash around with them.

My husband is also amazing.  He’s working so much, but this is a team effort.  I’m essentially his secretary, I get things done while he’s in his work cycle.  Because he works 12 hour night shifts, I don’t see him that much for four days out of the week.  But its worth it.  He’s already gotten promoted twice.

And my mom is working a lot more.  Which means we are getting along.

Today, things are looking up.  I hope by the end of the weekend I’ll have even more good news.

Thank you for reading!!


Day 20

Something you are trying to figure out..

How to write a book.  I would love to write a book about my experiences as a teenager, relationships, my love story with my husband.  I want to write a book about my husband and his friends and their crazy exploits.  I have journals full of ideas.  I have even started a timeline and outlines.

I just get discouraged.  Look at Amazon.  There are millions of books on there for every genre, situation, idea.  I get 5-10 review requests per day with someone asking me to review their self published book.

I am not a trained writer, the last English class I took was in 2000.  Although I know how to express myself coherently, I have no idea how to structure it into a decent story.

The goal is to get SOMETHING written before I’m 40.  Even if it is just for me.



Day 16

What’s the thing you’ve wanted to do but haven’t (yet)?

I’ve mentioned this on days 12 & 13 before.  I want to further my education in some way.  Currently, I am not in the financial position (or the health position) to do that.

I also want to have another baby.

I want to experience with my husband all the things I missed out the first time around.  Mainly, someone being excited about a new child, being eager to share in the ups and downs of pregnancy.  I want to experience raising a child in a non-abusive situation.  To know what it feels like to have an equal partner from the start.

My husband is a phenomenal father.  To his son and to my daughter.  There is no distinction for him whatsoever.  As there is none with me when my bonus son is here.  I am so lucky to have found someone who is willing to parent a child that didn’t come from them.

With my ongoing health issues, it is unclear if I will ever have another baby.  We have both agreed that if it doesn’t happen “naturally” we will be ok with that.

I haven’t been on birth control in years, so it’s looking quite unlikely.  But who knows…maybe we’ll be surprised.