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.

Shit.

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.

FML

scream

Good Lord.  Can it get any worse?

Well, yes it can.  I’m just blowing off steam here.  But there is a new complication to this entire autoimmune disease odessey.

I started with SEVERE back pain on Monday.  Because I have fibromyalgia, I usually ignore most pain and chalk it up to fibro.

Well, this pain persisted.  Its on the left side and higher than my usual low back pain.  It kind of wraps around my hip.

This pain is alternating stabbing and dull pain.  And I can barely walk.

I have been eating Tramadol more than usual and the pain finally prompted me to see my primary care doc.

After finding blood in  my urine, the doc thinks it might be kidney related.

Really?

She wanted to do an ultrasound immedietly, but since I have no insurance, this would be cost prohibitive right now.

So she put me on a muscle relaxer and told me to take it with the Tramadol.

She said if the pain doesn’t subside by Tuesday, that I will probably need that ultrasound, regardless of cost.

I know from my merticulous reading on the subject, that if I do have a kidney stone, it might be definitive of sarcoidosis.

I took the muscle relaxer last night, along with Tramadol, my usual drug cocktail and my weekly methotrexate dosage.

I woke up with the pain again.

I’m scared.

Really scared.

I haven’t told my husband yet, but since it is a holiday weekend here in the states, I can’t do anything about it until Tuesday.

It will be a miracle if we can make rent this month.  We have begged family members to help in the past few months and they have been extremely generous, but they are weary of our requests.

My husband just completed training for a job that will hopefully be full time and provide benefits.  He’s planning to work two jobs this summer to get us on firm financial footing.

The end is in sight.  It’s just these final weeks that are so hard.  I’m seriously terrified about the money.  I do not want to get evicted, we do not have money to move, and the type of apartment we could move in to is in a bad area.

So I’m not to happy right now.  I’m in pain.  I have to make food for the picnic I’m going on with my friends this weekend.  I at least try to do normal things, even if I’m feeling like hell.

Positive thinking:  This kidney stuff may be how I get a definitive diagnosis.

 

I survived Field Day 2013!!

fd

I feel like getting a shirt with this printed on it.

It was a blast, though.  Sunshine had fun, her friends had fun, the teachers had fun.

When I was growing up, we didn’t have things like this.  I was totally blown away by all the work and effort that went in to making a wonderful day for the kids.

There was obstacle courses, bounce houses, waterslides, games, popcorn, cotton candy, bowling, water balloons, a dunk tank.  They could make jewelry, paint a mural, and get their faces painted. So much fun!

They operated on a token system.  The kids received a token or two for doing physical activities (the obstacle course) and could use the tokens to do the “fun” things, like face painting, water slides, etc.  Kids learned that they had to work for the opportunity to play.

And how the school pulls it off is amazing too.

They break the grades up (PreK, K, and 1st) have the first round.  They can play for nearly two hours. Then 2 and 3, and finally 4 and 5.

The PTA asked that parents volunteer for the time period their child was NOT participating.  So I volunteered for the 2 and 3 grade round.

I did the dunk tank.  No, I wasn’t IN the dunk tank, I just stood by and made sure that the kids behaved, and that the kid in the dunk tank was ok.  The 5th graders were also allowed to volunteer to run some of the events for the younger kids. I had several 5th graders helping me with collecting tokens, handing out the baseballs to throw at the trigger on the tank and to keep the younger kids straightened out.

dt

The problem? I was walking around with Sunshine for two hours during her play time. I spent the next two hours on my feet at the dunk tank (and the water balloon pool).

I collapsed when I got home. I needed two Tramadol for the throbbing pain in my legs (and shoulder/arm from manually triggering the dunk tank when the kids hit the target, but not hard enough).

Another 2 Tramadol last night.

And this morning I am beat. Absolutely exhausted. I think the fibromyalgia is flaring, but it has been difficult to tell with the autoimmune disease on board.

I’m thinking its going to take me a few more days to get over it.

But it was worth it. Just seeing the beaming smile on Sunshine’s face was worth it. Just seeing how much fun the older kids had in a water balloon fight was worth it.

And I’ll probably do it again next year, although I might take a chair…

Pay the toll…you had fun…

Deep Eddy Pool in Austin, Texas

Deep Eddy Pool in Austin, Texas

I hate how both of these illnesses require payment when I do something other than sleep all day.

I am feeling pretty crappy today after actually getting out of the house and doing something other than going to a doctor’s appointment or to the grocery store.

I went with my family, my cousin, his girlfriend and their friends to a freshwater pool here in Texas.   I love going to these places around the city because they are so unique.

Deep Eddy pool used to be a swimming hole in the Colorado River.  After some storm damage, it was decided that they would make an actual pool.  They fill up the pool (in alternating sections) with fresh well water every other day.

The water is COLD!!  A bit warmer than Barton Springs (which is spring fed and always at 68 degrees, even in 100 degree weather).  But still freezing nonetheless.  Feels amazing on a day in the high 90s.

To get to the pool, there is a huge, steep set of concrete stairs.  That is probably what is contributing to my current situation.

And just being out in the sun and heat seems to sap my energy faster than anything.  We were there for a little over three hours.  And it was getting iffy for me as to whether or not I could make it up the stairs to head back to the car.

By the time I got home, I was feeling it.  I didn’t burn, thank you 70 SPF, but my back, legs and head were killing me.

And I had to do the methotrexate last night, because I’m volunteering for a little while at one of Sunshine’s school events tomorrow and I didn’t want to be a zombie.

So today sucked.  Horribly.  Sunshine woke up, true to her name, at 6 a.m.  I managed to get her to lay down with me while we listened to meditation music until 730.

I tried getting her fed and set up for the morning, but I was having difficulty walking and almost fell several times.  So my husband got up with her this morning and I went to bed.

But he had to go to work for a few hours around midday.  He came in and woke me up before he left.  I couldn’t give Sunshine the attention she wanted today, and she wanted to go to the pool again.  So my mom picked her up and took her to the pool in her neighborhood.

And I went back to bed.  Noticing a trend here?

I finally woke up at 530 pm to put dinner in the oven.  And I have been awake ever since.

My hockey team is on TV, they are in the Eastern Semifinals and I wanted to watch it on the big screen.  Or else I would be back in bed.

So as soon as this game is over, I am running a warm bath and then heading back to bed.

The pain hasn’t been managed too well with the tramodol today.  That is slightly scary for me.  I need to combine it with Tylenol more often to get the antiinflammatory benefits.  But with the elevated liver enzymes last month, I’m sparingly using all NSAIDS right now.  Not that I can take anything other than Tylenol anyway, thank you G.I. tract.

My hands and my left knee are throbbing, in addition to my left hip/lower back.  I’m not sure why I am having this pain, but I don’t like it.

I get blood drawn this week.  Hopefully the levels look better.  C-reactive protein was higher last month than the last test.

Positive thoughts?  I have been eating healthier.  We grow our own herbs, and with using oregano, basil and parsley I have been able to stop adding salt to my meat.  I really haven’t fried anything in over a week.  I’m eating more fruits and vegetables.  I made a huge pot of greens yesterday, but I’m a novice at the flavoring, so they were really, really bitter.  I was able to eat the carrots I put in the pot though.  Only slightly bitter.

It’s amazing that the human body craves what it needs.  For years I hated carrots, peppers, salads, etc.  My parents weren’t very forceful with the veggies when I was younger.  But I have noticed since I had the diagnosis of the autoimmune disease that my opposition to these foods is almost non-existent.

I have heard that your taste buds “mature” as you get older, but I think it is more of my body needing things and then craving that substance.  Interesting.

Cooking is what is keeping me feeling at least somewhat useful around here.  I have been making my husband wonderful dinners for the past few weeks.  I have been trying out new spices and cooking techniques.  Not bad for someone who was literally clueless at cooking a few years ago.

Can’t type much more, the fibro pain is also making itself known today as well.  Just lightly touching areas of my body is causing searing pain.  Example:  I went to scratch my arm a second ago.  I didn’t scratch hard, just enough to get rid of the itch.  The area where I scratched is now throbbing.  Fantastic.

I’m glad I got out yesterday.  Makes me feel like I am still a part of the human race.  I just hope next time the toll isn’t so high.

 

Why can’t I sleep?

Fibromyalgia is cooperating with the steroids to rob me of sleep.

Well, at least tonight.

I have always had a bit of insomnia from time to time since I was a teenager.  Fibromyalgia heightened this ailment and one time needed to be alleviated with Ambien.

But recently things have been getting really “out of whack”.  With the addition of the blood pressure medications, I have begun to require larger amounts of sleep.  For the past two months, I have been going to bed from 10-11 pm and waking up at 6 with Sunshine.

Then I’ll go back to bed from 7 until 11 or even 1.

That happened yesterday, and I think my poor, confused body is torturing me for the excess sleep.

But the sleep is so profound, it is like I struggle to escape from its grips.

I can feel myself trying in vain to wake up, only to be thwarted and thrown back again into deeper stages of sleep.

And the dreams are so vivid.  Like watching a movie.  I try to write them down, but sometimes it is too bizarre, or I can only feel the outline of the dream in my brain.

So I stayed up all night tonight.

At first it was reading a good book.  Usually I will drift off to sleep about five pages into my latest treasure and my husband will have to gently remove my kindle and glasses.  But tonight, he came to bed and I was still wide awake.  After two pain pills and my usual plethora of medications that make life somewhat tolerable right now.

So I moved to the couch.  Usually when this happens, I fall asleep within an hour or two and my cell phone alarm wakes me up.  But not tonight.

I don’t know if it was the book or the massive quantities of sleep from the day before, but even after a dose of Benadryl, I was still wide awake.

And here I am, writing a blog post at 5:30 in the morning.

It is pointless to attempt to sleep now.  Sunshine will be waking up in 30 minutes.  My husband is waking up early to take her to school because she has a huge project she completed and I don’t want her to take the poster on the bus.

Maybe then I can slip into a deep sleep.  And wake up in time to get Sunshine off the bus at 3.

Sunshine’s nose is growing

pinocchio

We have now reached the age where Sunshine is learning the difference between lying and telling the truth.

And true to form, the child is learning the hard way.

Recently she has been telling minor “fibs”. She outright lied to my mom a few weeks ago when she was told to put her clean clothes away. My mom found them on the floor in another room. When Sunshine was asked about this, she said that my Dad did it. Interesting..

Yesterday she was playing dress up with one of her friends. She has a nice collection of dress up clothes and those horrific plastic high heels. She asked if they can go out on the porch. Because I live on the second floor I told her she had to stay on the porch. I really didn’t want to take the child to the emergency room when she tripped down the stairs on those horrible shoes.

No later than five minutes passed before my neighbor downstairs (and a few apartments over) texted me a pic of Sunshine and her friend, in full princess costume complete with the dreaded shoes, smiling in her living room.

It gets better.

When she got back up here, I asked her if she left the porch. “No Mama, I listened, I didn’t leave the porch”. I asked her if she was telling me the truth. She stuck with her story three times. Then I called her over and showed her the pic.

Her face was priceless.

And she was grounded for the rest of the day.

Things I learned on vacation…

Sunset

Sunset

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.

Financial ruin and other side effects of chronic illness

People who aren’t living with an illness that they have to manage every waking moment of every day have a difficult time understanding the plight of those who battle their issues every day.

I am fortunate to have the love and support of my family (namely my parents and father-in-law).

I can’t imagine what would be happening if they weren’t supportive.

Apparently I screwed up with my student loan payments last year (I swear I made a payment), so guess who got the $2,500+ tax return money?  Uncle Friggen Sam.

This is a serious, serious setback.  My husband is taking classes to become a certified nursing assistant.  He owes nearly $700 on it and we were counting on the tax return money to pay for it.

He currently works at a job that gives him 32 hours, but won’t pay any benefits.  He volunteers to work more, but they don’t want to pay the health insurance.

I cannot work.  At all.  I can’t drive (if I do attempt it, I drive less than a mile to the grocery store).  I applied for disability.  I am trying to eeek out some financial gain from writing for an online newspaper.  Last month I made a whopping $22.

I have been sick for 7.5 years.  For the past SEVEN years, I have not had one day without pain, without fatigue, without concern for my health.  I have been ingesting chemicals for SEVEN years just to function.

Sometimes it just wears you down.

I am following the directions of multiple physicians.  I am trying to eat better and exercise.  I applied for disability, I have enrolled in a prescription assistance program for the medications that are absolutely vital.  I receive benefits from the state for food.  What else can I do to ensure I’m not homeless?  To make sure that I don’t go completely blind?

Sorry for the morose mood, just extremely emotionally and mentally spent after the past 24 hours.

Any suggestions or donations (ha!) are appreciated…