Month: September 2013

I have learned from the online CVID (Common Variable Immuno Deficiency) group that my problems are far from unique.  In fact, I am quite lucky.  My body has not suffered the level of trauma that many with this awful disease have.

However, going from one crisis to the next, seems to be par for the course.  This week, my crisis O’ the week has unfortunately been helped along by poor doctoring.

I have been having back pain for ages.  Really, ages and ages.  It started in my twenties and I am now in my late forties.  I used to see a chiropractor.  Over the last few years of chronic illness it has sort of been background noise, if you know what I mean.

“Ack, I hurt on my tail and my hip, who knows what that is?”

It was just one more hurt. I figured when it got bad that it was my kidney or something. Long story short, this week I went to see the neurologist, pain management doctor.  He decided, and probably correctly, that my back is suffering from some degenerative disk problems.  So, without any warning, he came at me with a syringe full of Kenalog (a cortisone product). He started injecting it in my back near my hiney where I have all the sore spots.  He was very self assured and said it would take the pain away.

Touche’

No, it has spread and worsened.  I have had no sleep due to the steroid and the pain,which has now moved up my back.

Angry much? Yes, I am.  I called his office yesterday and he wasn’t in.  “Lay on a heating pad.”  Rrrright… trying to work here!

“Call back if no better tomorrow because he will be in the office for two hours.”

Well Shit. I don’t want to go in when it is convenient for him.  I don’t even know if I trust him at this point,  I would have been much better off if he had just left me the hell alone.

I feel violated.  What to do?  Fake it?  I want to see my son’s guitar concert today.  I don’t want to run after doctors.  However, it is almost a guarantee that if I don’t address this, I will end up in the hospital.

Next time a doctor comes at me with a needle (oh, and no alcohol swipes!) I WILL RUN.

I finally was able to infuse my igg medicine last night.  I feel better.  It is like getting a giant shot of espresso.

The shit I have gone through these last two weeks to get the medicine is just unbelievable.  I feel violated.  I know I need to backtrack and alert the authorities to the gross medical negligence of the pharmacy that handled my order but I don’t even know where to begin.  They messed up by:

1. Not verifying with my insurance in time to continue my treatment.

2. I did all of the leg work to get the insurance verification and then found out there was never an issue there.  My diagnosis code means I will always be approved for this medication.

3. After approval they told me I would get my medication but then changed their minds and decided they didn’t have any in stock but didn’t call me back.  I called them.

4. I spoke with the national rep. for the pharmacy company every day for two weeks.

5. I was told the medicine would be delivered on Saturday and no one came or called.  On Monday nothing again.

6.  On Tuesday I was told, “we may or may not get a shipment of your medication.”  Then, later..” we got it and are having a courier deliver it to your house at 7:30 this evening.”

7.  It never showed up.  I waited up and took my pre-meds so I could infuse but nothing ever came.

8. On Wednesday I called the national office and they tried to find out the problem.  They were told I called and said, “my meds got here.” That was an outright lie.

9. My husband called the local office for me because I was too worn out to deal with them anymore.  He was told it was sent UPS.  He came home and waited for the delivery and had to work from home.  I had another doctor’s appointment.

10.  The shipment arrived with all of the ice bags melted and the wrong needles.  I used it anyway.

I feel better today and want desperately to put this behind me.  Yet, I am so afraid of next time.  I am also afraid of what happens to other people who cannot speak up for themselves.  What happens to them?

Where do I go?  Who do I tell?

I have to keep going with this.  My conscience won’t let it rest.

 

This has been an eventful six weeks or so.  I started but never completed a couple of posts.  Let me summarize:

1. I spent a week in the hospital with a kidney infection.

2. My interstitial cystitis (torn bladder and bladder spasms) is in full swing.

3. My insurance company is stalling and I have no infusion medication so I am open to all infections.

That is just a taste of the medical fun.  In addition, my daughter started college!  My son started the eighth grade.  My husband is busy trying to keep us afloat.  It has been a tough time. Frankly, I have been depressed.  I feel as though I cause more trouble to my family than I am actually worth these days.  The bills are mounting up and I am no longer able to work.  Even though I am on disability, it still is not enough.

I get tired of the pain and the isolation and the fatigue.  It seems there is never an end.  There is never a day where I am going to be ‘cured.’ I have to live with that and try to go one day at a time.  Sometimes that is very difficult.

I have been in the ER twice this past week with horrendous pain. My bladder and kidneys are in spasms due to the infections I have had.  I have pain medication for it but not enough.  I have done everything every doctor has asked me to and still it is not enough.

Today, at the request of my Urologist, I called my pain specialist.  The Urologist wanted me to call and ask for more medicine until my new medications can take effect.  His response? “Use a hot compress.”

Rrrright. I would like to see him put a hot compress on his torn and bleeding bladder.

I have also been fighting insurance all week.  I have made multiple calls to multiple people to try and get them to send my infusion medication.  This med is the one that keeps me from being really, really sick.

It is demeaning to explain it over and over to people who do not care.

I am depressed.  I hurt.  I just don’t want to keep doing all of this forever.

I am sorry if this post is not clever or cute.  I don’t feel clever or cute.  I feel flattened.

The End.