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…


Day 22

Tell me:  What do you want to do for a living?

My dream job is to review books for a living.  And to get PAID decently to do it.  I absolutely love reading.  And if I could ever find a way to get paid to do it….wow.  Right now I get paid in books, essentially, someone sends me their book for free in exchange for a review.  So that’s pretty good.

As a nurse, I would love to be some type of a “healthcare navigator” to people who are chronically ill.  Yes, they do have these positions available, but many of them are through health insurance companies, and not located in this area.  The problem with working for corporate health companies is that they want ROI (return on investment), which I understand, but you can’t quantify what nurses do in terms of money.

One company I worked for in a position similar to what I would want had all of these algorithms to determine just how much my time and advice was worth to the customer, the insurance company.  I hated being told that I couldn’t talk for longer than 10-15 minutes, that I had to hit these specific talking points, that I was restricted as to the things I could talk about.

I envision something like what I would have needed when I first got sick.  What is this disease, what are the treatments, what is the research, who are the doctors in my area that can help me?  How can I use my insurance (if they have it) to treat this illness.  What are some other resources in my area, how can I afford this?

I envision it all in one location, one person that knows the story and can navigate the person through the maze that is healthcare.  It would have to be mostly independent in order to truly serve the client, and not the insurance company.

So if anyone has an MBA and is willing to help find funding for this venture, or knows of a company that does things like this, let me know.


Baking for Sunshine

The "Rudolphs" are for the boys and the "Clarices" are for the girls

The “Rudolphs” are for the boys and the “Clarices” are for the girls

Sunshine turns seven this week.

Where did the time go?

In typical Sunshine fashion, she has commissioned her Mama to bake two sets of cupcakes for her birthday.  One set for her class at school, and one set for her “kid” party on Saturday.  There will also be another cake for her “family” party on Sunday.

Above is her “class” cupcakes, further divided into the girls receiving the appropriate “girl” cupcake and the boys receiving “boy” cupcakes.

Her “kid” party is a “spa” party.  I found a company in the area that comes to the house and does “spa” parties, i.e. mani/pedis, facials, etc.  Not too expensive either.  I figured I could do the same by myself, but with my health and the fact that my husband will be sleeping during party time, I am pretty much paying for the bonus of not setting it up, not cleaning up and not dealing with several six and seven year old girls by myself.

And with this week’s concussion issue (which I am still struggling with) I am so glad I made that decision.

Today was worse in terms of nausea, dizziness, head pain and fatigue.  I slept until 1:30 pm, completely unintentionally.  My husband slept until that late too, that was after we got up with Sunshine and got her out the door for school.

Sunshine hasn’t recovered from the return to standard time last month, and in combination with the recent stress in the house, has reverted to waking up every night.  Sometimes multiple times per night.  Great.

So I was completely out from 7:30 onward today.  I mean NOTHING was waking me up.  And it was nice to sleep that long next to my husband.  I truly do miss him when he is at work.

I am feeling a little bit better than my last post.  I went to therapy and I’ve been having some amazing support from my friends.  The situation itself hasn’t changed, and there are many times a day when I feel defeated.  But right now I’m ok.

And I now have health insurance again!!!  Yay!!

Hopefully I survive the weekend without too many issues.

Another health scare…

Last night, I was listening to my husband recap the ENTIRE “Breaking Bad” series in his own words.

I suddenly got a very sharp chest pain, right behind my sternum, that radiated to my back.

It felt like someone ran me through with a hot poker.

I also felt nauseous, couldn’t breathe and my throat felt like there was a lump in it.

I was a bad nurse, and three weeks ago I elected to take myself off of my blood pressure medications (because I was feeling pretty good and was starting to “bottom out”).

Well, last night my bp was 160/110.  Manual.  Yes, I checked it mysef (after my husband freaked when he saw 160/100 the first time).

I had my husband dig through the closet to find some old bp meds.  I also took some heart burn medication and benedryl.

The pain eventually subsided after an hour or so and I conked out.

I didn’t go to the ER because I’m poor and have no insurance.  

This morning I woke up with elevated bp and feeling like hell.

So I saw my doc, and the EKG showed that it wasn’t a heart attack.  She is calling it an “esophageal spasm”.


But I’m thrilled I didn’t have a heart attack at age 31.

And I am now back on my blood pressure meds.  Someday I will learn to be a good patient.

The truth hurts..

So Sunshine’s absentee father found my blog.  And he is not at all happy with his portrayal.  

I would like to point out that the child has not had ANY communication with this man since July 21 of last year.  He also blew off a scheduled visitation with her two weeks later.

Imagine what it was like for me…just started on chemo…just came home from supporting my husband as he buried his mother…and having to try to come up with an explanation to my five year old as to why her Daddy didn’t show up to visit with her.  Fun times.

The last 15 months have been difficult.  If you are reading this blog, you already know that.  

Sunshine still occasionally asks about him and her stepsisters and half sister.  I have no answer for her.  All I say is “he is making different choices right now”.

I’m still not clear what prompted his sudden interest in our child.  I did briefly have a text conversation with him that basically solved nothing.  

No reason for the disappearing act.  No apology.

And no inquiries to Sunshine’s well being.  None.  Not a request for a picture (I did send one) no musings on how she is doing in school…no questions about her as a person and how she is growing up.

Apparently he has found God and is praying for me.  He informed me that God will deal with me.  Nice.

This little conversation completely reinforces my decision to leave.  

One day she will have more pointed questions.  And I will show her the reams of email messages, transcripts of text wars.  

I still have my wedding album from my first wedding, along with some of his old pictures.  I still want her to know where she came from.  He is half of her.  And she will be curious one day.

I am eternally grateful for my dad and my husband.  They both have amazing relationships with her.  She also had a great relationship with my grandfathers.  

Positive thinking:  I worked all this week.  I have new floaters in my eyes, but I don’t know if they are old floaters or new ones.  I’m trying to hold out until my appointment with the eye doc at the end of October.  

Things are going smoothly at la casa de mi familia.  No one is dead yet, the cops haven’t been called, and the cat and the dogs are getting along…but keeping their distance.

Sunshine loves her new school.  She seriously just asked me to make up more math problems for her to put in her homework journal.

Despite the circumstances, things are going pretty well.


Good news…and getting back on the horse..

Friday I saw my eye doc.  No inflammation for the first time in over a year.

Per that doc, I don’t have to get back on antiinflammatory meds unless I have other symptoms that need treated, like joint pain and fatigue.

So far, so good.

My vision still isn’t fantastic, and once I get health insurance again (if that miracle occurs), I need to see the kind of eye doctor that prescribes contacts and glasses.

But I did two things that I haven’t really done in almost a year. I drove a car and not just to the grocery store less than a mile away, and I worked.

I am not foolish enough to believe that I can jump right back in to full time work.  I signed up with an agency that does health screenings for corporations and I was able to do five hours of ht/wt/vitals etc without dying.

I had some iffy moment with dizziness, difficulty with memory, difficulty lifting things.  But I worked and didn’t require EMS response.

Today, I feel like ick.  I think its more of the fibro and a combo of emotional stress.

Yes, the money is still an issue.  Add in the fact that my family (read:  father) is still punishing me for looking for alternatives to asking him for money.  I think that emotional distress is causing more pain than my disease processes combined.

But, I’m happy I am able to do SOMETHING.  And if anyone is willing to pay for a private nurse to advise their health decisions, I’m always looking for that type of work.

Until then, I hope I get more work through this agency, and the goal is to be back to full time work in the next six months.  Providing that I don’t experience a relapse or any other fun health issues.  

Thank you for reading!!  

Who needs a kidney? Or a liver?

The severe pain shuddering throughout my left back and abdomen might be a kidney stone.

My liver enzymes are highly elevated.

And I’m going out of town next week.


Ok.  I finally made it to the primary care doctor’s office last Friday.  She thinks the pain in my left mid/lower back could be a kidney stone, based on the pain location and the fact that I have microscopic blood in my urine.  She wanted to do a sonogram right then and there, but since I have NO INSURANCE, there is no way I can afford it.  At all.

She gave me muscle relaxers to see if it was fibro pain.  

It helped, somewhat, but the pain is still present, just not as sharp.

I’m currently waiting on her call back with the next step.

I have my liver enzymes check every few months due to the methotrexate.  Last month they were slightly elevated.  This month they are VERY elevated.

I’m not turning yellow or anything, but it is concerning.  The doc told me to hold the methotrexate this week and try to get in to see her ASAP.

Well, the next available appointment is June 19.  

Waiting on that call back to find out what I should do and if I should even travel next week.

Good news?  The pressures are down in both eyes.  Being compliant with painful eye drops definitely improves the situation.


Build-A-Bear and other devices of torture

Yesterday I went with Sunshine to her “Build-A-Bear” party for Girl Scouts.  I endured walking through the mall, going to Gattiland (its like Chuck E. Cheese without the annoying mouse) and attempting to socialize with the other moms.

I feel so out of place with this crowd.  Sunshine goes to Girl Scouts in the area where my parents live.  Its the same town, but my parent’s street has several million dollar homes on it (not theirs).  So the kids that are in Girl Scouts with Sunshine are wealthy.  And the moms rarely talk to me.

My mom is the one who usually does the Girl Scout stuff with Sunshine, but every once in awhile I have to take her to meetings or activities.

Most of these women have no clue what it is like to struggle.  The majority don’t work, they aren’t sick like me, their husbands make enough money so they don’t HAVE to work.  Must be nice.

But Sunshine had fun.  The party was funded with their cookie sales.  Sunshine sold over 100 boxes of cookies.

Sunshine made an all white kitty.  With pink high heels.  She named her “Sweet”.  Absolutely adorable.

I was horrified at the costs associated with making a teddy bear.  The girls earned enough that they could get a bear with one accessory or outfit.  But we had the option to buy more.  Which I couldn’t help with due to the whole “we might get evicted” thing.

There were girls that easily spent $100 dressing up their teddy bears.  I saw one “my little pony” stuffed animal that was decked out in rollerskates and a cape.  Seriously.

Although I feel bad that I can’t provide this for Sunshine, I’m glad that I am home with her everyday.  I couldn’t do that if I was working.

And she doesn’t notice the differences in finances.  She just knows that mommy is sick and because she is sick she can’t work and that when you work, you make money.

I hope when she grows up she remembers that you don’t have to have tons of money to be happy.  We do activities that are cheap or free.  We often take our own food because eating lunch or dinner out is very expensive.  We appreciate the times in which we are treated to activities we wouldn’t normally do or places we normally wouldn’t go because we know that without someone’s generosity (usually my mother’s) we probably wouldn’t be going anywhere.

Positive thinking:  Sunshine is learning that money isn’t the end all and be all.  She has a mom that is home with her instead of working her ass off trying to chase money.  She has a wonderful bonus daddy that is willing to put his dreams of becoming a nurse on hold so that he can get a full time job and take care of her mother.  She observes the way a healthy marriage operates every day of the week. I couldn’t buy this type of exposure for her.

Things I learned on vacation…



So I am back.

It was a wonderful, amazing, beautiful, relaxing, hilarious trip.  It was a ‘girls weekend’ including my mom, her friend, her friend’s daughter(who is a few years younger than me) and of course, Sunshine.

Here is what I learned:

1)  12 hours is a LONG TIME to be sitting in a car.  And a sedan, not an SUV.  Especially with Sunshine’s car seat is wedged in the middle of the backseat.

We were shoved in like sardines..

We were shoved in like sardines..

2) My motion sickness has not abated throughout the years.  I’m fine in the front seat, but the second I’m in the backseat, I want to puke.

3) Listening to the iPod for nearly the entire trip (and back) helps to alleviate #2.  I didn’t want to take any more meds that could make me even more drowsy.

4) Traveling with all women assures frequent bathroom breaks.

5) SPF 70 actually works!!  I used 30 on  my face (Neutrogena) and 70 everywhere else, and my face was the only place that looks slightly pink.  I also reapplied often and wore a lovely hat that made me feel like the “flying nun”.

6) At 50lbs overweight, men no longer look at me (and that is fantastic as far as I’m concerned.  Not the weight, but the lack of oogling).

7) It is possible to make new friends at age 31.

8) Even if the weather isn’t optimal, it is possible to have a glorious vacation.  Just being away from the daily grind and in new (beautiful) surroundings can make a difference.

9) Being “out of the loop” in terms of the media, Facebook, email is a very good thing.  Although I posted vacation pics to FB, I rarely sat down and read through the posts of others.

My "flying nun" hat..

My “flying nun” hat..

10) It is possible to have a fantastic vacation while in the midst of chronic illness.  I planned well, had all the pills, lotions, potions, drops, etc for every conceivable situation.  I didn’t need most of it, but it was good to know it was there just in case.  Also staying with two nurses (other than myself) helped as well. ** I forgot my pain meds, but by using meditation, music, distraction etc I was able to survive with only taking Tylenol)**

Next up?  A trip back to my hometown.  The first in 4 years.  The first time I will be seeing family and friends while I am **this sick**.

We are also planning another “girls weekend” for next year…


I also want to note that I did not spend one cent on this vacation.  My mom and her friend covered all costs for their daughters (and granddaughters).  I am eternally grateful that my mom decided to do this.

So I was right..

Yes, my eyes are a little bit worse.  I was right with my earlier instincts.

Saw the eye doctor, he did another steroid injection directly into my left eye.  This one was different ..he put it in a different location than the two injections prior.

This one required him to use that dreaded clamp to keep my eye open, wipe down the surface of my eye with betadine, and inject twice as much steroid as he did last time.

My right eye, which was previously clear of inflammation in January, is now inflamed.  It may need an injection to that eye in two weeks.

No matter how much numbing drops he put in, it HURT.  I mean, took my breath away hurt.  And since he put it in another location, not the back of my eye, I was looking directly at the needle as it was coming toward my eye.

So now my eyeball is bleeding.  Which is expected (I freaked out the first time it happened).  The blood is surrounding my iris, and I can see a shadow at the top of my vision.Image

To add to the fun, I did my weekly methotrexate dose on Friday.  I felt like hell all day Friday and Saturday.

My husband even took Sunshine with him to his boxing class this past weekend.

Yesterday I felt ok.  I HAD to get up and help my husband with the laundry and the house.  I made cookies, I made dinner.

And now, I am completely wiped out.  I slept 16 hours so far.  I woke up, got Sunshine on the bus, then back to bed.

I am up now because Sunshine is getting off the bus in 20 minutes.  And my husband will be at work until 8:30 tonight.

I am incredibly thankful that it is beautiful outside today.  Sunshine should be out with her friends most of the evening.  And one of my friends is coming over for “Mommy-baby dinner” tonight.

She can help with dinner and keep an eye on Sunshine until my husband gets home.

I really can’t tolerate reading or typing too much.  So I’m going to end this here.  I’m just concerned. My bp is still going haywire, this eye is effed up, and I can barely move.

My goal this week is to get to yoga at least once.