My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Wednesday, December 22, 2010

My Own Patient Advocate

I think my sweetie just realized this morning what kind of patient advocate I am for myself, and now for him.  He thought I got referrals for all of my specialists.  I used to.  I rarely do anymore.  I didn't have a referral for Dr. W, the geneticist specializing in connective tissue disorders, that I hope to see next month.  I didn't have a referral to the last rheumy consult I had, Dr. K., in Lee's Summit.  I didn't have a referral for my endocrinologist, Dr. G., in Columbia.  I didn't have a referral for Dr. A., my neurologist.  DH just called up his neuro and asked if I could get an appointment there.  Unfortunately we don't have the gas to get to DH's dermatologist appointment in Columbia today.  DH thought that a doctor had given him a referral to get the appointment.  Nope, it was his sweet wife who is worried about the numerous patches of suspiciousness growths on his skin.  He was the one who pointed these growths to me and I know that he's scared, too.

I just started subscribing to an newsletter, aptly named, Patient Empowerment.  I am trying to figure out if I should push for finding out if something neurological is going on.  One of the ongoing arguments Jim and I have is whether or not I have EDS.  If you listen to his side he thinks that I am going to make myself worse my resigning to accept the diagnosis of EDS.  He can even say this after he sees me put a joint back in!  I don't think he realizes how I feel really, really hurt by this  is and how angry him saying that makes me feel. Sometimes I feel so embarrassed at my symptoms.  I'm sick of yet joint slipping around.  I'm sick of walking unsteady.  I sick of passing out and trying to make no big deal of it when really it is scary to me.  I'm sick of visual disturbances and falls.  I walk so slowly with my cane I hate it and it's embarrassing.  I've been trying lately to not cry from pain and  thus show how bad I hurt by digging my fingernails into my palm and concentrating on the feelings in my palm.  I also use this method to keep myself from crying from anxiety.  It may not make sense to cause pain to keep from crying from pain, but it is actually more complicated than that.    I hate myself so much sometimes for always being sick.  I'm not sure what I did to piss what god off or karma or whatever.  I must have been really, really bad in a past life.  I've been getting up and getting things most of the time rather than let DH get them because I'm trying to hide how bad I really hurt.  Part of my unconscious is always taken up with pain so it makes it hard to learn, remember conversations, names, or dates.

Shit, both ankles are acting up.

Okay, I'm back.  My DH has to put the joints right for me.  Sometimes I can, sometimes I can't.  This was a can't.  This was also a particularly painful time on my right ankle.  I'm scared because my rheumy will not let me into physical therapy, pain management, or who ever makes braces/splints.  I'm scared because no one will give me a "game plan."  I don't have a primary care physician. None of the doctors I've tried seeing don't want to see me because of my medical problems, and if they do "excuse" the other medical problems they refuse to see me because of the EDS.  Even then, in the rare instance a doctor doesn't care about the following, they don't believe I'm in pain.  My rheumy is who I'm thinking of.  Her and the other doctor at the practice don't believe EDS hurts, EDS patients wear braces/splints, or that my H-EDS is even something that needs following up on.  I went and saw a cardiologist and she was really nice.  It was great to have a nice experience with a doctor.  Usually the only doctors I like are my gyno and endo.  So the cardiologist did a Tilt Table Test to check for Dysautonomia but I had to stop after awhile because I couldn't stand up the full length of time.  I was in agonizing pain after standing as long as I did.  Then they did an echocardiogram, which is an ultrasound of the heart.  My chest muscles are painful so when she pressed the instrument that she used over my heart it was so very painful.  I cried during both procedures.

I have what I believe are neuro problems as I went into on this blog entry and I posted a reaction to the comments on this entry.  I see tiny dots all of the time as well as blocks of color.  I just call them visual disturbances.  Let me differentiate a visual disturbance from a hallucination for those who don't know:

"A hallucination, in the broadest sense of the word, is a perception in the absence of astimulus. In a stricter sense, hallucinations are defined as perceptions in a conscious and awake state in the absence of external stimuli which have qualities of real perception, in that they are vivid, substantial, and located in external objective space."
This means a hallucination is something that you think is real.  I know that the colored rectangles I see and numerous colored circles are not hallucinations.  I also don't think that they are floaters.

I don't know what to do.  I know that I have to be my own patient advocate.  I know I need to appear strong, whether I am or not.  I'm in enough pain now I don't know if I'll be able to stop the tears.

This isn't getting me closer to an answer.  Often writing helps me to make decisions, but this time it didn't.  I feel more confused and scared about my health that when I started.

1 comment:

  1. I don't know how your husband can still have questions about whether you have EDS.

    I know that when I go to a doctor who sees that I was diagnosed as 'borderline' when I was 6, and told I would 'grow out of it', they often just say that I must not have EDS. I know I have EDS, otherwise there is no explanation for my childhood symptoms and the subsequent worsening of symptoms to the point that I now have chronic pain in all of my joints all of the time.

    I know how much it hurts to be told you are basically making it up, or that it is all in your head. There was a period of time that I was suicidal because I was actually thinking that it was all in my head and the pain I was feeling was something I just made up. Thankfully my then girlfriend, and now my boyfriend have kept my spirits up and I only have depression now.

    I can sympathise with you when you say you don't like how slowly you walk with your cane, and you're sick of walking unsteadily. It always makes me feel like a failure.

    I also try to hide the pain as much as possible, and the nails in the palm thing is something I do frequently. It definitely works, for a while. A lot of the time I can't tell where I hurt, because it is just something I am so used to... I hate when doctors ask you to score the pain out of 10 and tell them exactly where it is, because I can't answer either of those questions.

    I really think you should try looking for a different doctor (I know how hard that is, although I imagine it is much harder in America than Australia). You need someone who will listen and take care of you as a health practitioner should! I went to the pain clinic for a year and a half, before we worked out that no drugs work for me, but at least I was able to try.

    I can't believe that your doctor is so ignorant of EDS as to think it doesn't cause pain and you don't need splints! Have you printed out the information and given it to them? It is all right there if they bothered to look!

    Remember, sometimes it is better to go to the doctor on the bad days, despite how difficult it is to get there, just so they can see how you are on a typical day. That is the only way I was able to get disabled parking, as I was only just able to even get into the surgery from their carpark.

    I hope you find some answers, it's crap to feel confused and scared when there are solutions if only people would help you instead of hurting you.


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