Abilify

Today I started Abilify.  No, it's not the cannabis; it's the world that i'm trying to fit back into and this is part of the treatment.

I said before that I do not play about mental health.  In 2004 when I was diagnosed with MS, I was mostly upset because it affected my actual brain.  That's going all in.  I was devastated.  I began twitching long after the initial relapse was gone and I was in "MS Remission" because I'd have to relive the "bad news" over and over and over again constantly.  Learning to communicate with others was simple enough because I would hide the fact that I was reliving it over and over again.  And thais the PTSD aspect of it and I typically don't get treated via pharmaceuticals but because so much of my cognitive problems have gotten worst over the years, fast forwarding to 2016 as of today I am on four different psyche pills to keep me sane.  It was three initially but because I really wanted to punch the MS doctor in the eye, and the fact that I can't let it go, we felt it necessary to treat my psyche issues asap instead of letting them go, and they understand how I was treated in that MS appointment was wrong. Thank GOD I had a witness, ya know, and #kochecooper to see about.  It would have been a hot mess had I just gone off on him for not giving me adequate treatment because he wanted to push more pharmaceuticals.  This, coming from a man who clearly did not read my chart and know that I'm a full psyche patient.  smh  I don't know, I stay to myself when I have to however the pain of MS has been being treated by organic means because I refuse to put some MS stuff in my body if they do not have a cure for it because the risks are too great.  And I know they are too great because I have an entire team behind me helping me not put unnecessary meds in my system.  Apparently MR MS NEURO wasn't on board.

Today I drank water and ate a salad.  I ate a lot over the last few days with a full time caregiver but alas I have a few days on my own.  I'm going to try to eat.  but MS does give huge head pain and I was denied massage therapy or acupuncture unless I pay for it on my own by the MS Neuro doctor, so that's where I am at.  The pain is too unbearable and I have no idea if there is anything wrong in there but they want me to take meds not even having a MRI.  Clearly they saw that I was not walking straight and no, I hadn't taken ANY treatment that morning, went in just my un-medicated self.  My pain was at a 5 perhaps because I got a brief massage before the office visit.  So today my head is hurting out of my mind through my eyes, in my temple, in the back of my head, on the top of my head and when my sis called she said "go smoke" so I did and it finally went down a bit.  But then it came back and I tried to sleep it off but I wasn't at home so it was very uncomfortable. I don't want the pain meds, I want the massage and acupuncture.  It's just not fair. They know what I go through.  THere is no NEED to take those meds to slow down the progression if you see that yes ,I have MS, but I am managing everything with the help of being in a zen environment as much as I can and getting the proper support I need and being in agreement with me and my tea on my treatment.  This neuro ms doctor told me it was too expensive to give me a mri.

Anyway,I still have time to make a decision.  I have to research more, but I have readers block and writers block becuase ive been mad at the doctor.  smh.  mad at life because all the Dr is trying to do is help me.  sometimes i'm mad then sometimes i'm joyful so it's all weird.  But I'll save that for another post.  That's another story altogether. Peace, love, and light and please pray i get some organic therapy for my pain.  My entire body is cramping so i'm going to sleep.  Oh, and not to mention over active bladder, also something acupuncture could stop.

Distress Under Fire

I get overwhelmed very easily.   Once I'm in a frantic state of thinking, it's best for me just to walk away from whatever situation if it all I can when I feel like I can't get out of the situation. I understand that I just drift off into my mind into my mood space, into solitude I can prevent the worst from happening.  

This is typical, but I hate that it affects me so much. I’m trying to spread awareness, but when it happens to me it’s really hard for those around me to relate to the information provided:

Recognition and testing

Early recognition, assessment and treatment are important because cognitive changes — along with fatigue — can significantly affect a person’s quality of life and are the primary cause of early departure from the workforce. The first signs of cognitive dysfunction may be subtle — noticed first by the person with MS or by a family member or colleague.

• Difficulty finding the right words
• Trouble remembering what to do on the job or during daily routines at home
• Difficulty making decisions or showing poor judgment
• Difficulty keeping up with tasks or conversations

Talk to your physician if you are concerned about cognitive dysfunction. A specially trained health professional (neuropsychologist, speech/ language pathologist or occupational therapist) will administer a battery of tests and careful evaluation in order to determine the cause(s) of changes (since cognitive function can also be affected by aging or medications, as well as depression, anxiety, stress and fatigue). (info from http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Cognitive-Changes

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On this 9th day of my #45DayRawFoodDietChallenge, part of the difficulty for me has been remembering how to get the meals together. It’s easy, right?  No cooking involved?  WRONG.  IT’S VERY DIFFICULT AND CONFUSING FOR ANYONE, but for a MS patient it feels like the worst thing in the world. This “fog” makes me just not be able to do things, like even providing meals. I can just stick something in my mouth but for other people to depend on me, this is really difficult.  I can’t decide on things which means planning which means I can’t do it.  I can do it, but it’s taking me forever in between just having to zone out.  I want to succeed in this challenge and in life, it’s just that having people to depend on me is hard.  I’m not always reliable and that hurts.  It hurts to not possibly complete a task due to the stress of having to interact with others in order to do something. What have I signed up for?

"Not as sharp as you used to be? You’re not alone. An estimated 60% of people with MS experience some sort of cognitive dysfunction in their lifetime. It might become harder to remember things, to concentrate or to plan and organize. And just like physical symptoms in MS, no two people experience these cognitive dysfunctions the same way" http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Momentum_Memory-Loss.pdf

Well, see the issue is not being alone isn't helping my situation. How can I live in this world as an active member of society and in my family not being able to remember things, concentrate or plan and organize? OH, THE DISABILITY INCOME. Ha! That's a joke in itself. I don't want to hear "You're not trying hard enough" or "Oh, it's always something". If I had no legs and couldn't cross the street would it be "Oh, it's always something" or "You're not trying hard enough"? NO! It's because i have an invisible disability and because people can't see it, they assume I shouldn't be frustrated about it or not be frustrated at them for not acknowledging that's what's going on and to cut me slack and not make me feel like crap for not being able to do stuff out of whatever reason my mind won't focus on it. Day 10 should have come with all the answers, that's for sure, and it would have made my life so much easier.
Signed,
I'm hungry, tired, and scared but keeping on this challenge if I can.
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