Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Days like today I wish someone could just wave a magic wand and fix all this! After spending half the night awake due to bad spasms in my feet, now my jaw and neck spasms have decided to be extreme today. The pain my Oromandibular Dystonia causes is pretty much indescribable. It feels like my jaw is dislocating and that the spasms are trying to force my jaw off my face. The pain often causes me to grab my face, as I feel like I need to try to force it to stay in place. The pain then leads to seizures, I have had many seizures today, and all of this mixed together consequently leaves me exhausted.

I have had to resort to taking my Diazepam today which adds to the tiredness and is currently leaving me feeling spaced out, which I suppose is a nice distraction from the pain. I have always said to myself that this blog will be nothing but pure honesty, and to be honest right now I would just like to cry due to the pain.

Knowing that I can have my injections done tomorrow afternoon is a calming thought . They say that you are to try to live a stress free life when you have Dystonia as stress can worsen your symptoms. How are you meant to live a stress free life when you spend weeks in agony? When your Neurologist, the person who is meant to help you, has become someone you have to battle? How are you meant to be stress free when your life is upside down and the medical profession who are meant to help you are making things harder!

I don’t have down days very often but today is a very bad one. I know there so many positives around me but it is very hard to focus on them when the pain is this bad. I have no energy whatsoever today. I am still in bed and am trying to muster the energy to get up and changed but I would so much rather roll over and go back to sleep.

I have well and truly had enough, my Neurologist is going to have to do a hell of a lot tomorrow to convince me to stay with him. 7 weeks overdue for my injections is ridiculous and I am not prepared to go through this experience ever again, it is just too much!!

 

Advertisements

Comments on: "The Harsh Reality of Living with Lack of Treatment" (6)

  1. 7 weeks!!! That’s ridiculous! you poor thing!!! I’d be going back to bed today too, We’re all allowed to have bad days!

    Are there any other movement specialists near by?! I feel so terrible you’re in so much pain! I hope tomorrow will be better for you ❤ ❤

  2. I HAVE BEEN READING YOU EVERYDAY, AND I AM FEELING SO VERY SORRY FOR YOU. I AM PRAYING FOR YOU. I WAS SITTING HERE FEELING SORRY FOR MYSELF. I HAVE ESSENTIAL TREMOR AND C.D. BUT READING YOUR BLOG HAS MADE ME SIT UP AND TAKE NOTICE HOW LUCKY I AM. I GET DOWN BECAUSE OF HAVING FOUR GRANDCHILDREN LIVING WITH US, PLUS MY SON WHO WORKS NIGHTS AND SLEEPS DAYS. IT’S BEEN TWO YRS NOW SINCE THEY BEEN HERE AND I GET SO OVERWHELMED AT TIMES. BUT GRAMP AND I ARE DOING IT FOR THEM SO THEY CAN HAVE A HAPPY HOME. THERE MOTHER WAS VERY ABUSIVE TO THEM. I WILL BE 71 NEXT MONTH AND WITH THE HELP OF MY PHYSIATRIST, WE ARE TRYING TO GET SOME ADJUSTMENTS FOR MEDICATION FOR ME, BUT WE HAVEN’T BEEN TOO SUCCESSFULLY. I HATE TAKING ALL THIS MEDICATION, AND I HAVE OTHER MEDICAL PROBLEMS ALONG WITH THREE BRAIN TUMORS OVER THE YEARS. AND THERE ARE SOME I HAVE TO TAKE FOR HIGH BLOOD PRESSURE AND ANTI SEIZURE MED S. I WEAR A LEG BRACE FROM ONE TUMOR, SO I DON’T GET AROUND VERY WELL,BUT DO WHAT I HAVE TOO. MY HUSB. IS VERY BUSY BUILDING RACE ENGINES, SO HE IS GONE DAY AND NIGHT. HE IS VERY SUPPORTIVE OF ME, BUT NOT HERE ENOUGH. I ALSO HAVE OSTEOPOROSIS, SO I AM SO AFRAID OF FALLING AND BREAKING A BONE WHICH I HAVE SEVERAL TIMES, AND I CAN’T AFFORD TO BE LAID UP. THE CHILDREN S MOTHER, WHO LIVES WITH HER MOTHER, ARE SUPPOSE TO HAVE THE TWINS (11) TWO DAYS A WEEK, BUT IT HAS BEEN THREE MONTHS SINCE THAT HAS HAPPENED. I FEEL LIKE THEY ARE SITTING THERE ENJOYING THE GOOD LIFE AND I AM DOING ALL AND MORE OF WHAT THEIR MOTHER DID. SHE DOES NOT DRIVE AND WON’T LOOK FOR WORK. OTHERWISE SHE WOULD HAVE TO PAY CHILD SUPPORT. THAT GRANDMOTHER IS VERY MEAN TO THE CHILDREN, SO IT IS BEST THEY DO NOT GO THERE. I SURE DID NOT HAVE THIS IN MY PLANS FOR MY GOLDEN YEARS, BUT ALL IN ALL I AM DOING WHAT HAS TO BE DONE, HERE I AM WRITING TO YOU TO SAY HOW SORRY I FEEL FOR YOU, AND I VENTED ON YOU. I AM SORRY AND I PRAY FOR YOU. YOU ARE A VERY BIG INSPIRATION TO ME AND I CAN’T IMAGINE WHAT YOU ARE GOING THROUGH AT YOUR YOUNG LIFE. I HAVE HAD CD FOR 40 YRS, AND JUST A COUPLE YRS AGO A VERY NICE NEUROLOGIST SAID THERE IS HELP FOR ME WITH THE BOTOX. SHE IS MY ANGEL, AFTER ALL THE NEUROSURGEONS I HAVE SEEN, SHE SAID THEY WEREN’T INTERESTED IN ANYTHING BUT YOUR TUMORS. SO I FEEL I HAVE TWO ANGELS NOW. THANK YOU AND GOD BLESS. PATSY

  3. Louise chamberlain said:

    Aww bless you, it must be bloody awful (to put it mildly) keeping everything crossed for you and hoping something positive will happen soon. HUGS xxx

  4. I can’t use Botox, so I appreciate this posting. I have six teeth that were cracked by the same attack. One molar has just a ridge and the roots remaining, and due to our condition I need to wait because they can not do anything in my mouth due to the risk of injury to myself and the dentist. My meds make my mouth so dry, and it is creating gum disease for all of it.

    I’m so sorry you are going through this, and I sincerely hope they help you asap. Big Hugs!!!

  5. Franz Krämer said:

    Hello Rebecca, 7 weeks for the time, this is a joke. The Doc has probably still had no pains.
    If it goes at all, search for you a new Doc for motor disturbances.
    Everybody may have bad days.
    I embrace you and hold on you completely.

    Hallo Rebecca, 7 Wochen über die Zeit, das ist ein Witz. Der Doc hat wohl noch keine Schmerzen gehabt.
    Wenn es irgend geht, such Dir einen neuen Doc für Bewegungsstörungen.
    Jeder darf schlechte Tage haben.
    Ich umarme Dich und halte Dich ganz fest.

  6. Joan Piedmonte said:

    As you well know, some days/weeks are worse than others. I am sure that after your Botox takes effect you will feel much relief and life will be bearable once again. I firmly believe it is ok to allow yourself to have down days when the pain & frustration get to be too much. And get angry when your doctor does not do his job. 7 week delay? Someone better make darn sure that never happens again. Human decency should dictate the alleviation of patient suffering. Doctors must be held accountable–by patients as well as their professional oversight boards. Make noise. And I pray you find improvement & a move in a positive direction. You deserve it!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Tag Cloud

%d bloggers like this: