Friday, February 1, 2013

My life as I know it has crashed and gone up in flames

Part I
I am not sure if I will be able to actually get through this entire blog post.  My 2 year old will be waking up from her nap and my 4 yr old is painting her latest watercolor masterpiece (called The Bird's Nest) and we are listening to Janet Jackson on Last.fm. 

I was recently dumped by an entire health system.  Yes, that is what I said, the entire health system, aka A***** Hospitals and Clinics in Minnesota.  Most of the specialists I rely on for all of my care are all within this health network.  The psychiatrist I have seen for four years, the primary care provider..for a little over a year (actually, the only one who has agreed to help me), my pain clinic, neurologist, orthopedic, etc, etc. 

Anyway - my primary has been managing my pain, reluctantly and badly, with narcotics, which so far have been the only medication that keeps me standing and taking care of my kids.  The pain meds have not worked well and they have so far refused to adjust my dose, or give me a stronger med (which would take care of the pain), because of all the controversy surrounding managing pain with long term narcotics.  I do understand the downside of narcotics for pain management, but I also know that when you I am in prolonged pain combined with severe fatigue I start to lose my mind and get suicidal.  I am not a suicidal person for the most part but when every waking minute is agony it is hard to want to live. 

Since starting my treatment I have been herxing more than not, and the pain has been unreal.  I have often had to take extra doses and this has caused me to run out several days early.  I have always been honest with my PCP about my struggle to make my meds last the entire month with herxing, and she has always been understanding and still signed off on me filling my meds a few days early.  My contract says to use only one pharmacy or let them know if I am using an alternative, which I have always done and also with the blessing of my primary, as she told me a month ago that she doesn't believe I am abusing my medication or being shifty. 

So....this brings us to yesterday.  I had planned on having a conversation about pain management with my PCP for my afternoon appointment.  That morning, however, I also was to have my monthly meeting with my psychiatrist in order to get my Lorazepam rx for my anxiety and panic attacks.  I have learned to have my husband accompany me to my appointments because I, for some reason, get treated more respectfully and he adds credibility to the myriad of insanity diagnosis that I now possess.  We arrive, let the front desk know, he makes a phone call, a security guard shows up and goes and stands outside my psychiatrist's door.  Don't know why but we thought nothing of it.  She ushers us in and before we can sit down she says, "I am sorry this had to come up but we have something serious to discuss", and hands us each an envelope.  Before we can open it she says, "Here is a letter terminating our client relationship and you are not welcome to use our services anymore because you broke your controlled substance contract."  I am still not quite registering what she is saying and my husband is staring at her like he has gone dumb.  I can see him start to boil and I open my letter which states. 

Dear Ms. W****

Dr. S.E., MD, and I have consulted with each other about your care.  We have reviewed your prescriptions for controlled substances with the MN Board of Pharmacy database, and we are concerned with the following:

1) You frequently run out of medication prematurely.  Prescriptions intended to last 30 days are being filled on average every 23-25 days.
2)You have used at least 10 different pharmacies.

These are serious violations of your A***** pain contract.  For these reasons, Dr. S.E. is no longer comfortable or willing to prescribe narcotics.  You are also no longer able to be cared for within A***** Clinics, including Mental Health and the U***** Pain Clinic.

In order to transition your care, I will be tapering your lorazepam and your prescriptions will be sent directly to L**** Pharmacy.  You will see Dr. S.E. today to start the taper of your narcotics.

It will be important that you find a new primary care provider and pain clinic in the Twin Cities as soon as possible.  In the meantime, you have R.K, NP to provide interim care.
sincerely,
GVD, MD

And with that she stands and tells we need to leave her office.  I am still sitting on the chair, but, but, butting like a motor boat because all of this has come completely out of left field like a bomb went off.  A psychiatrist, who I have worked with for 4 long and painful and sick years, WHO KNOWS ME, who believes me to be suicidal, who believes me not to be sick but deeply depressed and emotionally fragile, is DUMPING me with no warning, and for reasons that are not accurate.  Not only am I being dumped with no warning....I am being excommunicated from the largest health system in our state.  Not only that, but the person they are saying I can get interim care from is my LLNP who lives in another state and doesn't even bother to call me back when I am in a crises.  My husband finally found his voice and said, "But this isn't even true!".  She just continued to look at me like I was some disgusting criminal and said coldly, "I am not at liberty to share any information with you and I think you need to leave now."  Both my husband and I became frantic, peppering her with who, what, why, how questions and she continues to glare at me like I had murdered her dog.  She informed us if we had any questions then we could take it up with A***** Legal department, but she didn't have to tell us anything and wasn't interested in hearing what we had to say.  She told us again that we really needed to leave.  I can't even describe how deeply I was fucking devastated, torched, slapped, stabbed, freaked out like I have never been before.  My heart literally dropped into my stomach.  I couldn't even see straight or have the sense to stand up and walk out the door.  My husband grabbed my arm and helped me through the lobby and into the elevator  - followed by the same security guard - which, by this time, I am sobbing huge cry baby sobs that are loud and probably scaring everyone in hearing radius.  I can't even make my limbs move and everything is ice cold numb and I can't stop sobbing from the complete unfairness and coldness and rudeness and plain and simple assholedness of what this bitch of a woman just did.  Someone who's job it is to keep people mentally healthy just cut me off at the knees without a simple sayonara, sorry to see you go.  This woman who must have taken serious acting classes to have acted like she cared about saving my life for 4 long years only to turn on a dime and tell me to fuck off and die like she didn't even know who I was. 

My poor husband didn't know what to do.  He wanted to run and get the car for me but didn't want to leave me in the lobby crouched on the floor, bawling my eyes out and hyperventilating while people stared in horror, but he couldn't even get me to move I was so distraught. 

Up until this point I have had moments of great sorrow and wringing my hands over the unfairness of friends and family judging me and turning their backs on us.  I have had big, bawling cry baby sob sessions every time a lifelong relationship had come to a nasty end, out of the blue with no reason or warning.  I have had a lot of this since telling people of our Lyme diagnosis.  But all my prior experience with devastating abandonment and loss did not steal my bones for being dumped by my health system. 

This is probably a lot to chew on so I will post what happened at the afternoon with my PCP tomorrow.  To be frank, I am really trying not to think about this as much as possible because I came very near the end of my will to live yesterday and if I think about the enormity of what has just happened I don't know that I will be able to hold it together.  I already spent 12 solid hours crying my eyes out (while the kids were not home) and I allowed myself to cry on the way to the pharmacy to get my step down pain meds today.  My daughter held my teary face in her hands last night, and peered into my face with her eyes big and wide, and said, "Momma...sometimes the good days just turn bad, but it will be okay."  And they do, and they will.  My 4 yr old is a wise little soul.  She has seen more suffering in her young life than many adults do in their lifetime. 

I made the pinkie swear today to my children.  That I will not take my life, and that I will keep fighting until we are all recovered from Lyme, and that I will grab as much joy out of life with them as I can....and celebrate every blessed moment that is good.  Because the bad is a lot and it is really bad, so bad that if I didn't make this pinkie swear with my children now I may have not made it to this weekend. 

For any of you out there that are struggling the daily life and death struggle, that Lyme is so good at forcing you into, please click on this link and join me in making the pinkie swear. 

http://whatislyme.com/if-you-ever-feel-suicidal/

okay, now to put my squirrels to bed and finally rest my aching body until tomorrow. 

1 comment:

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