Share. Connect. Love.

Posted 2015-04-22T15:48:00Z


In discovering all the things that have been going on with my body, I have beccome starkly aware of various atttributes that overlap each other in their course of progression.

I have decided that the ONLY way I can embrace this process in a positive and forward thinking manner, and avoid this well of Depression and puzzle pieces floating all over the place ALL OF THE TIME.... is to tap into my long term memories of "Caren before the wreck and her love of Medicine and its advances"...and force myself to LEARN and take notes differently, and try to understand what it is I am reading differently without respect to time frames (because it may take me days to read one article or re-read it many times to understand and process it before I can form a way to communicate about it).  Allow myself to process things differently and force myself to document things as I the "Caren after the wreck" doesn't forget the details, loses the essence of the communication and importance of those details needed in a recall situations - to speak or advocate calmly, rationally, and without trying to grasp for words that are there but seemingly unobtainable, and memories, that are as inconsistent as each grain of sand or each snowflake.  The inconsistencies that render myself, and the people around me, frustrated at best.

The Dis in Disease means quite literally " away" or "without" - so without ease.  So when we hear of something being called a Disease - I automatically think of doom and gloom and awesome.  Something I cannot control.  However, if I look at it more closely and deeper and recognize something....not as the END, but as the begining of understanding a different way of doing makes things possible.

Typically, when a person hears Dis-ease (Disease) process, I imagine, like me, it must automatically makes a person, much like myself in that aspect, reflect on their own mortality and how it can be lengthened or sustained for a set period of least that is how it is for me and how I think. Why did this happen, how did this happen, and how do where do we go from here become questions without answers and direction...which can leave a person feeling helpless, hopeless, or in a state of perpetual "panic" if you will...

(See: dis- a Latin prefix meaning “apart,” “asunder,” “away,” “utterly,” or having a privative, negative, or reversing force (see de-, un-2.); used freely; used as an English formative - disability; disaffirm; disbar; disbelief; discontent; dishearten; dislike; disown or without)

It's like my life is at a table being served.  My life has been given the menu of dis-eases and dis-ease processes by which there is no escaping their stark realities and significance in my life, and yet they are all largely and mostly invisible injuries to the naked eyes of another.  They are most certainly menu choices I did not order for myself, because I had different plans, goals, and desires for my life.

A "Menu of Life" As I know it....and in no particular order:

1. Chronic Pain, with ongoing unhealed fractures STILL (as of this writing, we are 16 months later); Polytrauma not      resolved so body is still not in what I have been told is the "recovery" stage until all healed....

2. Traumatic Brain Injury (TBI)  - a diabolical process of puzzle pieces 

3. Neurogenic Bladder

4. Hypothyroidism 

5. Poly Cystic Ovary Syndrome (PCOS)

6. Pseudo Tumor Ceribri (In Remission still)

7. Pathological Hypersomnia and lets not forget this is mixed with Insomnia - YAY ME, *smiles* and preexisting sleep apnea which was managed with no problems before the I can rule certain things out.

That is just the majority of what we know so far.....and here I am left wondering...what are we missing?  What piece of the puzzle are we missing that hasn't been checked yet....AND how do I move on....move FORWARD from here.

My bucket list items to still get accomplished:

*Get all hormones checked and Pituitary checked for Hypopituitarism from either Neurologist or Endocrinologist

*MRI of Brain involving diffusion tensor imaging (DTI) and magnetic resonance spectroscopic imaging (MRSI).....which the Level one Trauma facility here (I learned recetly) has available...woot woot!

However an MRI of my brain has NEVER been done, not even at intial ER admission or in the admission hospital or NeruoRehab setting....does anyone other than me see a problem with this?  I was told "just because we have the technology available does't mean we have to utilize it".....say WHAT???  Can ANY of you reading this  right now, explain this to me so I understand WHY this statement should even make sense???  Anywhooooooo...moving along......

*MRI of Cervical Thoracic and Lumbar Spine (scheduled)

*EMG of Right shoulder and arm (scheduled)

*Continue Counseling and Various Therapies -  the verdict is still out on this aspect of things for me in this realm, in transition, fluid and ever changing, even by my own observations, and will have to be discussed uner an entirely different post)

So in light of all there is to do, or to be done...whether by self advocacy, discovery of information by the many healthcare providers I have come to learn a great deal from (in both effective and ineffective methodologies) and depend on.....let's continue this journey proactively.....and so I say....ORDER UP!

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted

Comments (4)

  • Karen Francis
    Karen Francis

    Caren, I can't remember if you are on disability and medicare. I've had a gap in insurance coverage with my medicare starting May 1st. Since the "gap" I've had another seizure, have been throwing up at least a few times a week and have lost almost 15 pounds in a month. I try to stay positive too but it is so hard when you feel like this. I think you may have told me before that you have never had an MRI and I concur - totally ridiculous!! I don't remember though, how extensive you head injury was but even if they did a CT scan, they should have done an MRI if the CT scan showed swelling, etc. With a TBI we are told that we may never totally recover to the person we once were. For me, at this point I know that isn't going to happen. They should be comparing MRI results over time to look for signs of changes, atrophy (more than what is considered normal), etc. I also can't remember if you live near me but good luck with the EMG....some people say that it didn't hurt or bother them but I have had a few EMG's and I can tell you that the shocks are worse than the sticks. I anticipated them and got all tensed up and was a sweating, nervous wreck by the time each one was finished. All I can say for myself is that I cant wait for May 1st to get here to get in with my neurologist, GP, psychiatrist, etc because I'm feeling lousy and just want to feel better -even if it isn't what I consider "normal".....hugs!

    6 years ago · Reply
  • Caren Robinson
    Caren Robinson

    Karen, you are truly an inspiration to me. I have seen you in the video and have seen your posts. I just felt I could relate to you on so many levels. I am sooo sorry about your lapse in medical coverage. How stressful and frightening not to have access to the much needed care and follow through that you depend on. There is no seeming compassion when it comes to depending on others to makes sure insurances don't lapse or run out. There are so many things that still need to have attention added to them regarding that genre in general and TBI and the coverages that are needed for a lifetime for such. How debilitating and exhausting. It's always like one step forward, two steps back. However Karen, we are still moving forward. You have come so far and offer meaning to this world. To people you don't even know too I am certain. I just recently learned about a lot of MRI things so haven't talked to you about it you didn't forget! I just learned they should have done an MRI of my brain immediately and another one at 6 months and then 1 year to follow any possible changes. CT scans, as you know almost always show up as "normal" in mild and moderate and even in some severe TBI' not a total clinical picture. I have never had an EMG before. This will be my first. I have lost a lot of feeling that has spread to some degree, however, am glad to hear some feedback about your experiences. I find I tend to have Less anxiety with the more information I know going in to something.....epecially something involving needles or surgery. I have found a lot of comfort and relief in the TENS unit. Is an EMG anything like using a TENS unit? I am learning things on my own the hard way about my injuries. I have had some great providers and some kiss my arse don't know what the heck they are doing or how they got their diploma providers. Most of what my family and I have learned though has been self-taught and thank God for the internet and online networking abilities. There was no education or referrals offered to my family in regards to anything with me - until just recently through the Home and Community Services of MaryFreeBed ( I have PT, OT Rec Therapy, Speech Therapy, and my current Physiatrist through them). I currently get wage loss from the Autoclaim through the wreck. So I get up to 85% of my wages. I can get these for up to 3 years or until I return to work, whichever comes first. This is hardly enough to sustain a family and pay for everything that insurance doesn't cover. I keep hoping I get healthy enough and healed enough Orthowise to return to working - I miss it a ton! I don't know how I would do that though, at the same time with all the medical appointments I have, the cognitive and processing changes, and all that other jazz going on. I had a Fulltime job + overtime prior to the wreck. So things for me are dramatically different now. The company I worked for, God Bless them, held my position for 11 months but then let me go as I was on medical leave too long, the company was restructuring and "eliminated my position". I have no ill will to them though. Like, who holds your job that long......seriously! However, I still have not been released to go back to work and so that has been financially devastating to my family on multiple levels. Thank you Karen for responding. It is helpful to me to see the number of hits on the pages go up....however, the comments and support and the knowigness that someone out there is actually reading them and then gives feedback, actually helps get that extra boost needed to get through the day week to go until your inurance is back in full swing....hold on dear girl...hold on

    6 years ago · Reply
  • Carolyn DeNeut
    Carolyn DeNeut

    YOU are an intelligent amazing person Caren Robinson. Thank you for teaching others through your crazy awful as they are.

    6 years ago · Reply
  • Caren Robinson
    Caren Robinson

    Carolyn..I figure the best way for me to cope with all this stuff in a proactive way is to educate myself and then write about it. We are never promised tomorrow and if I can help someone along the way with information based on what I am going through...what a blessing that would be!!!

    6 years ago · Reply