Kitten a Go-Go

To Two Unlikely Readers

Tonight, I can't stop thinking about you both.  My heart aches for you right now, but for different reasons than your own hearts might ache.  If they even still ache at all.  I love you both, dearly.  Many times, I hoped that I could have what you do.  Or did. 

As my first marriage slipped away, I hoped that maybe I could make my own fairytale.  But your fairytale always seemed to be just that.  Destiny.  Meant to be together.  After all of the trials, drama and heartache, at the center, there was always you.  Together. 

I could look to you and say, you know what, true love does sometimes win and you just have to fight for it.  My personal fairytale.  It is so hard for me to watch and not be able to help.  I want to mediate and med, but I don't think it matters.  It doesn't seem right that your fairytale should end. 

I wish you both the best, even though I will lose one of your in the process.  May you find the path you are searching for.  I am so sorry that you couldn't find a path to walk together. 

Love,
Danielle

Look, it's 2009!

I finally updated some of my links.  Gee, that was long overdue. 

I Can Find My Soapbox, Even with Pneumonia

Dear Readers, it is probably safe to say that I have an advanced degree in being a medical patient.  I have spent years getting dicked around with tests that go nowhere and doctors who want no part of what I'm selling because I don't fit into their little box.  Let's review the past six months or so. 

I have continued to see Dr. Garcia at the FFC.  I would give the presentations at their clinic if they gave me a free B12 shot and some water.  I love that woman.  Here's the thing about Dr. Garcia and the FFC.  They do not take insurance.  I have bitched relentlessly about the costs in other posts.  Hell, I have that other blog about how much their costs helped the Danielle Deficit.  However, when I make an appointment with Dr. Garcia, I get at least thirty full minutes with Dr. Garcia.  Not the nurse.  Not a PA.  She listens to me.  We go over my past labs and current labs and anything else.  I have gotten accustomed to this sort of doctor patient relationship. 

Earlier this year, I sprained my ankle.  That led to Dr. Doom.  Then to Dr. Gubler.  My appointments with Dr. Gubler were relatively quick in duration, but how much time can one take for that sort of thing.  I agreed that I needed additional tests.  When the additional tests came back, I got a shot that did nothing and I honestly believe was a complete waste of time and money because I don't have tarsal tunnel. 

When that didn't work, I was given two options:  surgery or go see a neuro.  Off to the neuro I went.  Especially because I don't need a scar and a tattoo on the same damn foot.  Neuro spent about ten minutes with me at the first appointment and it was test time.  Two MRIs, labs and other tests done in her office. 

I went back to get my results today.  My tests were clean.  (Whew, because I was worried about MS.)  She tells me that my central nervous system looks fine and have I considered that it might be fibro.  What????  She knows about Dr. Garcia, so I am assuming this was a slip up.  I gently remind her that I have been treated for fibro for years and i was there because the symptoms changed.  Before I could get anything else out of my mouth, she was writing an Rx for a spinal tap.  What?  My CNS is fine, and now I am going for a spinal tap...  An invasive test which will require me to miss more work and will also require my husband to miss work.  But for what?  She said everything else was fine.  Sure, it's nice to rule stuff out, but this is a bit much. 

Also, within the past week, I've had the pleasure of visiting the Emergency Room twice.  First, because the neuro told me to go because I couldn't work my right arm, and that turned out to be a pinched nerve.  But, instead of seeing me in her office, I had to go there to get a cardio workup.  6.2 hours in the ER and they gave me the same stuff that the neuro would have.  Does that really necessitate an ER visit over a quick office visit?

That was last Monday.  On Thursday, I felt like crap at work and assumed it was the pinched nerve or the meds and I went home.  Took my temperature and it was high.  By Friday morning, the temperature was soaring and I was starting to have trouble breathing and I was making strange sounds while coughing.  I gave up and asked Brian to take me to the ER.  Again.  Fortunately, our stay was only 2.5 hours.  My second chest xray in five days.  Pneumonia.  I'm going to be honest, this was a new one for me. 

For the past four days, I have felt like ass in a way that I haven't felt in years.  I take millions of naps.  I cough millions of times.  Sitting up is a huge chore.  (I am currently sitting up in an attempt to see if I can make it through some of my work day tomorrow.)  I realize that if this continues, I need to go back to the doctor.  Nothing annoys me more. 

In these recent experiences, I have noticed a huge difference in the standard of care:  If I want attention from a specialist, I need one who doesn't take insurance.  If I want attention on something "easy," I need to go to the ER.  I can't wait to see what my insurance bills will look like for this one. 

Obviously, healthcare reform is widely discussed.  I think it is total bullshit.  We need insurance reform.  I posted something on FB about my frustrations and one of my friends, who is married to a doctor, remarked that they get about two minutes with each patient and they order a battery of tests because if they miss something, it's on the doctor, rather than the insurance company.  I think everyone can agree that this is the sad state of healthcare in our country. 

So, while I might bitch about Dr. Garcia's rates, it's pretty damn reasonable when I think about my hourly rate.  She has made more progress than 8 years of other doctors have. 

I am respectfully declining my spinal tap until a need arises.  I am simply not giving into the overabundance of testing and making my insurance premiums even more costly for my employer.  I'll stick with the doctor I pay for out of my pocket directly and I'll get the level of care that I imagine most doctors wish they could give their patients.

Adding to my arsenal of medical knowledge

Today, I had the big tests with the neuro.  My arm felt a lot better when I woke up.  Everything was good until I got in the damn car and had to drive.  Pain immediately came back. 

When I got to the neuro's office, was taken to a tiny room with a recliner and lots of computers and things.  First, we did the REV.  Annoying.  This tests your vision and looks at the back of your optical nerve.  It was a lot of flashing black and white squares and it made my head hurt. 

Test #2 was an SSEP.  This was a fascinating test.  Electrodes and shocking bits.  That part wasn't too hard.  Just lay in the chair and let the lady do her thing. 

I still have that nasty ass paste in my hair, but I have enjoyed putting my hair in unusual styles.  Although the tech is not allowed to report official results, she said that the optical test looked okay.  She also said that the SSEP seems to indicate a pinched nerve near my neck which is what the lovely people at the emergency room said yesterday. 

I get the official results on Monday when I go back to see Dr. Goodman.  Until then, I have the pain and nerve meds from the ER.  Those helped me nap today.

During my nap, Brian came home and woke me.  It was about 6:30.  I was having the most bizarre dream.  I wasn't in the cast of Ugly Betty, but Betty was there, as Betty.  We were working on a play of some sort.  It was strange.  I wonder how that would have ended if he hadn't come home until 6:45.  Perhaps we would have been on broadway.

At a 4 way stop sign

Me:  Go.  Come on, go.  I waved at you.  What is this?  Some kind of game of chicken?

The Boy:  Since no one is going, I would say this is the opposite of a game of chicken.

Me:  Does that make it a game of egg?

6.2 Hours and all I got was this lousy plastic wristband

Look, here's the thing.  I have taken a lot of medication tonight, so you are going to have to figure out how to navigate this little mess that I'm sure to write.  If I could get into a comfortable sleeping position, this would not be happening.  But, my lucky readers, sleeping hurts, so here we are.

As I indicated in my last post, I have medical shit going on.  (Sorry.  Brian says I curse a lot in my blogs, but whatever.)  Tomorrow, I have the REV and SSEP and i thought everything would be normal until then.  Nope.  Wasn't happening. 

Here's how my day started.  Get up.  Take thyroid meds.  Go back to sleep.  Wake up.  Go downstairs for breakfast.  Realize that right arm won't work.  won't go up and down or in any other direction that arms should go.  lay on couch and hope it will pass.  It didn't.  eat breakfast.  (tricky with limited motion.)  go upstairs.  Demonstrate limited range of motion to Brian.  Brian scowls and doesn't understand that i seriously can't lift my arm without numbness or searing pain.  When I get this across to him, he scowls some more, mostly just at the bizarre maladies that I always have.

I am right handed.  Can't work without a function right arm.  Particularly if right arm is unwilling to cooperate in any way with even the slightest movement. 

Call neuro.  When neuro finally calls back, says that MRI came out normal (this is good because MS is unlikely now) and i should go to hospital to get cardio work up, just in case.  I don't want to go to the hospital.  It takes to long and everyone is covered in germs.  So I try to lay down.  Way too painful.  Reluctantly decide to go to hospital. 

Want to know what is a bitch when you can't work your dominant arm?  Brushing your teeth and getting a damn bra on your plentiful bosom. 

Go to hospital.  Not too many people there.  Assume quick trip.  Arrived around 11.  Basic triage goes rather quickly.  Get ekg quickly.  then sent to waiting room.  much more crowded.  Must be the lunch crowd rush. 

At this time, there is a spectacular male patient in the waiting room with me.  First, his very old wife is extremely mean.  She spends her time doing crossword puzzles and being mean to hospital staff.  He is old.  He is wearing a strange bathrobe with many patterns, one of which may have been an animal print, and I believe it was tied with a golden color cord.  Underneat this robe, he was wearing a long sleeved button up blue gingham shirt.  It did not match the earth tone safari robe AT ALL.  He finished his ensemble with a pair of white socks and suede beige loafers. 

Blood work time.  I am in the same room as the robe guy while he is going through triage.  We are separated by a curtain.  Chatty phlebotomist insists on talking to me to make sure I won't pass out, but I do overhear that robe guy is there for a testicle problem.  Robe guy is instantly renamed Testicle Guy. 

Back to the waiting room we go.  Watch god awful bold and the beautiful.  What happened to Jack Wagner?  He had such a hit with "All I Need," and now he is stuck on that show.  Yick. 

My turn again.  Back to get a chest xray.  Wheelchair ride was fun.  Had to remove bra.  Not fun again. 

Back to waiting room.  At some point, lady comes out to bring me pills and some crackers.  i guess they worked. 

Then nonstop sitting.  As the World Turns and Guiding Light (if that's what I was watching) are the two worst shows on earth.  Then I watched Ellen.  Then the news came on.  By the time I reached the five hour point, I was getting a little punchy.  I drained my phone battery trying to entertain myself all day.  I was heavily medicated, so my attention span only allowed me to get through about 70 pages of my book. 

Complain that i have been there for 5 hours.  5.25 hours, taken into room where doctor will come talk to me.  Doctor comes about 15 minutes later.  She tells me that my tests were fine and that I probably have a pinched nerve.  I need prescriptions.  go back to waiting room.

Get prescriptions.  Neurontin, Naprocyn (sp?) and Lidocaine patches.  Finally leave into the 104 degree inferno that is Las Vegas Summer.  6.2 hours total. 

I had four other prescriptions to refill, so I got the big paper bag at CVS since there were seven in all. 

Neurontin is good stuff.  it seems to do the trick.  But it doesn't last long enough. 

Tomorrow, i will get all of my other tests done and hopefully they can tell me which of my damn nerves is pinched.  (I just sort of guessed when I put on my lidocaine patch.)  (Sorry, when my dear husband put on my lidocaine patch as he kept saying "Boobies!  I see Boobies!."  That's exactly what you need when you're drugged up.  Your husband taunting  you like a fifth grader.  We got the patch on.)

Now, tomorrow is going to be interesting because I have to wash my damn hair.  I do not know if i can do that with one hand.  I hope Brian doesn't have to leave for court that early...

I am going to try and sleep on the couch right now.  Maybe it will help if i have a little nudist heating pad on my shoulder. 

Today

Today is one of those days where I feel like I can't do it any more.  I am pushing my body too hard.  I am fatigued to a point where every inch of my body hurts.  My head hurts.  My scalp tingles.  Patches of my legs go numb without any warning or reason.  Then suddenly the numbness goes away.  I am exhausted.  I can't think clearly.  It hurts to think. 

I have volunteered for too much.  Taken on too many upcoming commitments.  Need to better realize my own limitations.  I cannot do everything.  I am not super woman.  Right now, I cannot be kind.  I cannot be compassionate.  I can focus only on how much pain I am in and how no amount of sleep seems to make it better. 

I can't focus on anything but the new pain and what the new pain could mean.  I don't know that I can handle any new diagnosis.  I need this to be "just fibro." 

Today is a day when I don't know how to keep up with everyone else in the race.  I cannot do it.  The thought of getting out of bed tomorrow hurts my head.  But it doesn't matter if I get 7 or 15 hours.  It is a cycle that never stops. 

I don't make this any easier on myself.  I keep taking on more and more.  I can't keep up.  But I don't want to disappoint.  No one wants to hear that you are tired.  No one wants to hear that you don't want to be around people.  No one is going to give you a pass for fatigue.  Not in my business. 

My scalp won't stop tingling. My head won't stop throbbing.  The tears have started. 

Today has not been a good day.  I am going to bed and hoping for a better day tomorrow. 

I have a brain and a neck! Oh, and flats suck.

Okay, this is a long overdue health update.  I haven't posted anything recently because of the privacy concerns, but that simply isn't who I am.  I have always said that if this helps someone with fibro, it is worth it. 

Remember when I sprained my ankle?  It was supposed to heal and stuff.  It didn't.  Since that time, I have had considerable numbness in my legs.  It is patchy and doesn't seem to come with any sort of pattern.  Sometimes I get pins and needles.  Sometimes it comes and goes.

I had to buy lady shoes.  Little tiny kitten heels and, ugh, flats.  Ugly ugly ugly shoes that I hate.  The shot in my foot did nothing.  It made my skin peel, which was a nice side effect to know about. 

I talked to fibro Dr. Garcia and she recommended I see a neuro since my NCV came back abnormal.  So I went back to Dr. Goodman (another highly recommended LV doc).  It's test time. 

Today I had an MRI (with contrast) on my brain and neck.  (I have both.)  I was concerned because an IV was involved, but the nurse did a good job.  Boring boring boring.  Lots of counting of the clicking noises to try and find the patterns.  15 loud clicks, then 7 soft clicks after a 1 click rest.  That was my favorite pattern. 

I have to get some more blood work.  Lupus and that sort of thing.  Things I have tested negative for a million times. 

Next week, I am getting two other mystery tests at the neuro office.  It's going to take hours.  I will find out my fate on 7/6.  We'll see what fun is in store.  I am not taking well to the flats.  I tried to put on heels and wanted to die.  I can barely wear the kitten heels.  My shoe life sucks.  I don't like it one little bit. 

To My Dad

Through Emails to Daughter, I'm sure you can tell that my dad is pretty cool.  Happy Father's day, Dad.  I'm a lucky girl to have you.  I made a list, which Typepad just deleted for some reason, so now I am angry at typepad, but I hope you have a great day celebrating you!

Where I Am

If you are one of my three steady readers, you probably noticed that I took the site down for a few days.  I had the internal battle that many bloggers go through about being private and, yet, through the blog, putting it all out there for the public to see.  And, a particular concern, having no control over who sees it. 

I have become more conscious of what is positive and negative in my life.  Unfortunately, there was a constant nagging source of negative.  I let it simmer for far too long and it finally boiled over.  The particulars are stupid and seem juvenile, but it all comes down to the same thing - I will not continue to feed into the negativity.  I do not want toxic sources in my life.  The most important realization is that only I can determine what is positive or negative to me.  No one else can make that decision.  No one else can pressure me into feeling a different way.  This isn't a campaign.  It is my life and I will choose how to live it. 

That being said, I thought I should put up a shield.  Guard myself.  Be more private.  Then, I thought about it.  I realized that this was dumb.  Why on earth would I dare think that I need to change anything about who I am or how I want to live my life because of negative sources?  It's sad that I even entered into that mindset for a second. 

So I'm back.  I've been feeling negative a lot over the past week.  I'm done with that.  I am here to live my life to the best of my ability.  I will take care of me and do what is right for me.  I will not act out of guilt.  I will not act out of duty if it is going to cause me pain or even a moment of self-doubt.  Not going to live that way. 

If people don't like my decisions, it is up to those individuals to deal with it.  People make their own decisions and then live with the consequences.  That is what I'm doing.  That is what everyone on earth should do.  Stop blaming and making excuses.  I do what is right for me.  You do what is right for you.