[Vrae]

I give up! I am literally about to lose my mind and at my wits end. I cannot believe what I encountered on Wednesday. I mean I’ve heard of it happening, but O…M…G..! Really?!

I have rambled on and given a LOT of backstory. If you like, skip to “And get this…” in bold below.

So I was Dx w/ RSD (as it was called back then) in 2004 after an L5-S1 discectomy. After several months of not healing properly the surgeon sends me to a pain doctor. The PM re-classifies me as CRPS II and I see him until 2009 when I lost my insurance. I have been self-employed since 2003 and couldn’t afford the premiums of $1k a month any longer. I went off all meds except 800mg Ibuprofen and took that several times a day. I did this until late 2011.

The 2011/2012 winter was brutal for me. I start tremorring like CRAZY, severe spasms, pain levels through the roof! The spread had begun and it was well into both legs/feet and now letting me know it was headed elsewhere too.

Since I was in bankruptcy and completely losing my butt due to the economic conditions (the fallout of 2008-2009)I apply for and receive something called CICP, Colorado Indigent Care Program in 2011. This allowed me to at least see a doctor and I had access to an emergency room. I mention the ER because the doctor that I was to see in the clinic would not proscribe even Gabapentin. No meds of any kind for CRPS and told me I needed health insurance. Well duh! I had to be referred to a Neurologist within the system. He did that. The ER docs at least provided me some meds to limp along with as my referral to the neurologist took a YEAR and some begging. They only accept so many new patients with CICP per year.

In late 2012 finally get into the neurologist and oh boy, he’s a young student and I am WAY beyond his pay grade. He did try and help me a bit, but said I needed PM. GREAT! Yes! Let’s do that. Only to find out it would be another year or longer before they would accept any new CICP patients, if at all. So this Neuro doc gives me gabapentin, Soma, tries amitriptyline, reluctantly (because he is not PM) gives me tramadol. The ER docs had given me enough bigger gun pain meds to try and keep me out of the ER for breakthrough, I can’t take it anymore, pain. I rationed drugs this whole time. I have learned to live with a certain degree of pain.

Since 2011 my husband has been jumping jobs and pay grades trying to eventually get me/us properly insured again. We worked our business together since 2005. It was tough to go back to corporate America and command decent money and benefits. Hell, just to land any job was impressive since the economic crash.

So here we are in late 2013 (Oct.) and my husband and I are starting to successfully dig our way out of a huge financial hole, and he lands an excellent job, with Cadillac benefits for us. Wow! This is fantastic! I can finally see ANY doctor (or just about) that I want to. I don’t have to settle for the ONLY neuro doctor that will see me, and bonus I will get PM, etc.

In October start lining up doctor appointments with the doctors I had not been able to see since 2009. I found what I think is a good neuro doc but I cannot get in until late Jan. 2014. On Wednesday I went to see my old PM. The same doc who had classified me as CRPS II.

And get this…

I go to my appointment. They drug test me, cool. In advance I had my recent records from the student nuero doc sent to the PM’s office (some 40 pages). I bring with me my old records (4-5 inches thick) from 2004 to 2009 with me. This includes this PM’s records, HIS OWN RECORDS since they were unable to find or get my old records from storage. As well as an MRI of my back from April 2012.

I try and give the medical assistant info about me (10 years worth) in what seemed like a nanosecond. They’re on a schedule of what seems like 15 minutes a patient. Yikes!

The doctor walks in and he doesn’t remember me. He can’t seem to get my records from the neuro doc open on his laptop. He briefly thumbs through my old records that I had brought with me, that include his records that they couldn’t retrieve from storage. HIS old records. He reviews my pee drug test I had just taken and says "you don’t have any opiates or painkillers in your system". Me: right. Doc: When was the last time you had any? Me: A couple of days ago I took a few tramadol. Then I was in the ER with what I thought was gallbladder last week and had been given Roxicodone, which by the way doc they gave me a massive headache. You see I don’t take them every single day. If the pain justifies it, I take them, otherwise I don’t. But I go on to explain how I am taking them more often do to increased pain levels in many areas. Doc: what do you want me to do for you”? Me: I am wondering about compound creams, lidocaine infusions, um… what about ketamine infusions?

Doc does a VERY brief exam. Mashes on my torso. Touches lightly (OMG) on my most affected body part, my foot. Me: Please don’t do that. Doc: walk on your toes. Me: I can’t. Doc: Walk on your heals. Me: I can’t.

We sit down. Doc: Where did you get the painkillers you say you have. Me: Tramadol from the neuro doc and opiates from the ER. I have been on CICP and have had trouble receiving proper care. Doc: What’s CICP? (I explain and while I do I am SHOCKED that this doctor, who has practiced in Colorado for at least a decade, doesn’t know what that is! Wow!) Doc: What do you want me to do for you? (OMG again?) Me: I want you to help me. Doc: I can’t prescribe you anything until I talk with the neuro doc. Me: ok. Doc: Are you on disability? Me: No, I am planning to file, but I may not get it given how my taxes were filed while self-employed. Doc: Do you work? Me: No. (I don’t waste time telling him I am winding down my business. He is now obviously in a hurry, more patients to see and I am taking way too much of his time.)

Doc: I don’t think you have CRPS. Me: What?! Doc: you don’t present like a CRPS patient. Your skin would be molting. Your pain levels would be higher. You have pain all over and not just in a localized area. Me: But you treated me for several years. Doc: you many have had it many years ago but not now. I think you should get a job and keep yourself busy and keep your mind off this. Me: I have a job! I have a husband, five children, a house, three dogs. I can’t do dishes or make dinner and not be exhausted or in massive pain afterwards. I can’t fold a load of laundry and my arms not hurt and be very weak. He is shaking his head like he doesn’t think CRPS. Me: But right here it is stated in your own medical records. Doc: maybe you had it then, but not now. Me: Let’s you and me go for a walk. It won’t take long for me to lose that ability. I’m having a good day today. The sun is shining, I’m not on a period, it’s early morning (my best time of day)… Doc: I don’t think you have CRPS, it must be something else. Me: I disagree with you. Doc: that’s your right.

I continue to plead my case to get help and begin to cry. He says; I think you should do more PT, and we can do some nerve blocks, or a bier block, but I have to talk with the neuro doc first. Make an appointment for next week and we’ll talk more.

Now I’m just confused and crying and he is on to the next patient. Doc: It was good to see you again.

He’s gone and I am left crying. I walk out, and in my mind there was no need to make another appoint. I say to myself; let me get this right. I should pay you more money next week so you can be more prepared or whatever. We can do blocks. You don’t think I have CRPS (You confirmed my diagnosis in early 2005 and treated me for it until late 2009). My skin is not molting. I am not taking enough drugs. I’m not in enough pain at the moment. I don’t have CRPS. Got it!

I drove away crying and literally screamed out loud in frustration (a couple of times). I have NEVER just screamed like that. I was losing it (completely) in that moment. This meltdown last a couple of hours.

<sigh> Since then I am left feeling deflated, defeated. The wind has definitely left my sails. I just knew that I would at least get gabapentin, and that I would not be forced to go see the student doc again for a refill, since my new neuro doc appt isn’t until late Jan.

So before I start to cry again, I will finally end this. Thanks to anyone who was willing to read all this crap. More than anything, I just needed to get it out. I am really at my wits end.