Silence and Quiet

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Another post without photos. An update of sorts I suppose is in order.

I am totally confused and feel like I have no one to ask for help in understanding this disease.

My doctor never called to explain the PT findings of nerve damage and muscle weakness. My PT was given approval to work only on my leg, not my arm.

Why ignore my arm again, the site of the original injury, when nerve damage in my right arm and leg is found by PT?


For the last two years, just like in the report that came back from the State, my arm and what happened is erased, like it never happened. Despite confusion about whether what was going on in my leg was CPRS, there was never doubt about the arm. I kept asking why I was not receiving treatment for the CPRS in my right arm.

I asked the State investigator why she didn’t want to speak to the witness that was in the room that evening with me, who saw the immediate pain and tears, and heard the nurse say he hit a nerve. No, none of that information is ever revealed, in fact, they say I was never even harmed by that needle. They said nothing happened to me there. I have a witness. No one cares.

The PT had me do an exercise with photos, which you can imagine, I did pretty well on. Except for one angle that seemed to send my brain in a tailspin, literally, I just could not process that particular angle. My brain sped through all the photos until that angle threw it off each of the three times we did the exercise.

Since I did so well on all the rest, I was told I graduated, and this week, we will do mirror therapy.

CPRS therapy without a CPRS diagnosis. After two years of fighting, insulting me and saying I was basically crazy and making this CPRS up despite a diagnosis in my right arm in October 2008. When I think about the stress and pain the doctors themselves caused, I am beside myself to think this is allowed behavior from doctors.

My dad said doctors have the right to deny treatment to patients. My dad and I are not speaking now. Perhaps we never will again. I said he owed me an apology, and so did the hospital.

I feel bad the hospital sends in a student PT, after all the hearings, and struggle, their denying access and causing delays, they send a student in to do the work. I told the PT I didn’t blame her, and I knew she is gathering more information about what is going on in my brain.

The PT agreed that until we know about the nerve damage, we are working in the dark.

Why would I be treated for CPRS if there is actual nerve damage? Can doing mirror therapy heal nerve damage if it’s there? I mean, is my brain working well or is it not? If I have an injured nerve, doesn’t it make sense my brain was registering pain?

Of course, there is CPRS II – with nerve damage.

My PT can’t refer me for the necessary medical team support required to figure out.

I guess my insurance doesn’t want to pay for neurology, pain management, pain psychologist, EMG, these are all the standard medical support offered to a CPRS patient.Why else would they deny these services right from the start, delaying my treatment now two years, after one and now, it appears, two diagnosis’ of CPRS? The insurance receives Medicaid money for the service they provide. Is there no oversight? How much Medicare money was spent to not treat me for two years?

Yes, ok, my fault, bad person. I did not spend the extra money I didn’t have on health insurance. The insurance I have now is for low-income people who can not afford insurance, the insurance administers the Medicaid dollars.

I have been waiting, counting the days until I get Medicare, so I can leave this hospital all together.

Nobody is going to stop these delays and unethical tactics of a hospital doing all it can to protect itself, they get away and got away with this for two years already.

I called the specialist who is also a neurologist to share what the PT found. This is the specialist who takes Medicare, and whom I had planned on traveling to see on April 1 when Medicare goes into effect.

What I wanted to find out from a neurologist – since I have no access to one now – was, if there is nerve damage and muscle weakness, is it possible I don’t have CPRS at all? Is it possible my brain is working fine? Registering pain from nerve damage? Yes, and Yes.

Catch: The specialist said I have to get to a neurologist before I can travel, and before April.

This information sent me into a tailspin. How can I get to a neurologist? It’s not like I can refer myself.

I can’t even get them to follow through on the wheelchair so I can get myself around. I have told my doctors that since last July its become so difficult to walk that I just don’t. I have been trying to get a wheelchair since last July. I even brought an administrative hearing to get it. Oh, the judge ruled in my favor, a wheelchair prescription was issued by a doctor I don’t know, without instructions in December 2010. When I asked my doctor why she had not prescribed the wheelchair herself, she said because “you were in such a rush and I wasn’t here that day.’ When I asked for the instructions so I could order the wheelchair since only a prescription had been sent, she said I had to contact my insurance. I did, they don’t call back.

I can’t refer myself, what can I do? Is there no one who looks over the behavior of doctors and hospitals? How does this happen? I was diagnosed in October 2008 with CPRS in my right arm. I have not been seen by a neurologist since April 2009, and once again briefly in January 2010, when I was told they would not see me again until pain management saw me, and well, as I have said, even going to the pain management office in tears begging to see a pain specialist, didn’t make a difference. I have not been seen by a pain specialist either. After insisting to know why, I was told I was ‘barred’ because of my behavior.

It’s just me and the student PT now (she does have many years of experience, six, and she is very nice to me).

The PT said she looked all through my file for any mention of me being barred, and nothing! Presto. Gone. Don’t worry, I say, I have a copy of the letter, and a witness that heard the doctor tell me I was barred from neurology.

This is not the first time my records show something different from what happened. Their files say I was seen by a pain specialist last July, I was not. The files say I ‘missed’ appointments when I did not. Why would I have avoided seeing a doctor?

But, it sure adds to a great story: woman misses appointments, complains of pain of unidentified source, makes scenes claiming extreme pain. ‘We had to bar her.’ Shouldn’t hospitals be barred from turning away patients?

My dad said I wasn’t being turned away, they are giving me PT.  o.k.

I forgot my honey last week when I went to PT. Sadly, I was not able to get out of the building before nausea overtook me, and I was embarrassingly sick right there. The PT overseeing the student PT came out to the hallway. I begged her to explain what is happening to my body. She told me to breathe. I did. One more embarrassing scene in the lobby as we made our way to the taxi.

No phone call from my doctor. No follow-up. I am being given PT -finally – for CPRS, and no one has called to even tell me I have CPRS in my leg. After a year of checking every other cause – my doctor even telling me ‘don’t go chasing the big money on CPRS’ – all I get now is PT sessions for CPRS.

And, if I do have CPRS, its not CPRS 1 – its CPRS 2 with nerve damage.

How do I handle this? What do I do now? The fear, sadness and then, anger – I allow it in for moments only, I must not let this take over me. I pray. I pray a lot. I light a lot of sage. I visualize someone seeing what has happened and giving a damn. I visualize a warrior, a medical overseer who will see what horrible experiences  have occurred since being hurt at a hospital, someone who will notice I went in for a urinary tract infection and now I can’t walk.

I can’t walk.

I push that aside now. I must go on now with the day. My leg hurts a bunch, it started straight from the morning, the veins in my right foot push out, and there are remnants of the bruises that come from walking to PT last week. I also tried one work assignment, a photo assignment for a book idea someone presented to me.

This assignment, and my other one preparing for the installation, these give me simultaneously hope, and at times, wonder at how long I will be able to do even the little I am able to do now. I focus more on the hope and the excitement I feel in working at all.

A while back, I took photos of my bruises, the different lesions. I sent them to my doctor. She said nothing. Not even nice pictures.

Today, I better push aside the feeling I have been treated worst than a dog.

Let it go now. Time to focus on something else.

Any neurologists out there who can do pro-bono work?


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