Monday, December 29, 2014

Dying Young

My biggest fear (and my children's, too, unfortunately) is my passing away from MS. I'd much rather it be from natural causes like old age (100 or so). When I go to lay down, I think of death and it makes me wake back up.
I love my family, friends, pets, etc. I used to not want to live, but now I have so much to live for. The anxiety that thoughts of death cause me is bad. I try to relax. I just don't want to leave anyone behind....

Thursday, December 4, 2014

2 Feet or Bust

"It might be a good idea to back off a bit when dealing with people who suffer from anxiety, according to a new study, because the disorder seems to affect the need for more personal space surrounding the body, also called "peripersonal space."
British researchers found that people with anxiety perceive threats as closer, compared with those who are not anxious. They said their findings could be used to link defensive behavior to levels of anxiety, particularly among those with risky jobs, such as firefighters and police officers.
In conducting the study, Dr. Chiara Sambo and Dr. Giandomenico Iannetti, from University College London, recruited 15 people ranging in age from 20 to 37 and gave them a test to rate their level of anxiety in certain situations.
In addition, the researchers applied an electrical stimulus to a nerve in each participants' hand, which caused them to blink. This hand-blink reflex, which is not controlled by the brain, was monitored as the participants held their hand at four different distances from their face: ranging from about 2 inches to nearly 2 feet. By measuring the strength of their reflex, the investigators determined how dangerous the participants viewed each stimulus.
The study, published in the Aug. 27 issue of theJournal of Neuroscience, revealed that those who scored higher on the anxiety test reacted more dramatically to stimuli about 8 inches from their face compared with those who had lower anxiety scores. People who reacted strongly to the stimuli farther away were classified as having a large "defensive peripersonal space," the study authors said.
Anxious people viewed threats as closer than those who were not anxious -- even if the perceived threats actually were the same distance away, the researchers said. Although the brain does not trigger defensive reactions, the study authors said, it could control their intensity.
"This finding is the first objective measure of the size of the area surrounding the face that each individual considers at high risk, and thus wants to protect through the most effective defensive motor responses," Iannetti said in a university news release.
-- Mary Elizabeth Dallas"
The hardest part of mental disorders are the quirky ways they make us feel. I have intense anxiety when anyone leaves personal items in my room. I've been working on it - immensely - but I'm still very much triggered when it still occurs.
Honestly, nobody should be placing their personal items in my room as storage, even temporarily. Not my children, not my girls. Its important to me to be able to look around and see memor of ME. And mostly its females i have the issue with. Is it a trust of intentions issue?/Perhaps, but that's mental, right? I'm aware. I once had an IQ of enormous amounts, which is why my psych says I'm "intelligent".  But intelligence or not, it still doesn't stop

Misunderstandings lead to me feeling alone and misunderstood

Along with MS, I got Cognitive Dysfunction.  smh

Well, recently I got an email from a teacher and in my response,  I asked her for more clarification.  I can tell by the way that she responded she was being defensive. She doesn't know me, so I did advise her that I was an MS patient and I do learn things a little differently.  I asked her to bare with me while I asked for more clarification.  I feel like she thought I was pointing the finger at her, so I had to explain to her that all I wanted was to ensure that my child was not giving me excuses, I needed all the facts and details (because I'm not there in the classroom with him)- that is the only reason why I asked more probing questions.  I do that so I can fully comprehend, but people take it as if I'm interrogating them.  Thing is, if they are being honest, what does it matter?

I CONSTANTLY explain that I learn differently due to MS, and that I need more clarification. So this time, I was kinda hurt because the teacher didn't respond back to me.  And like most people, she may have gotten defensive.

I was told by a family member that perhaps I was the one being defensive.  I was shocked, and kind of insulted.  I can me asking questions equate to me being defensive.  Is that me being defensive or is that me seeking more clarification?  It's annoying that someone would assume that I'm defending my child when ALL I am trying to do is DISCUSS things????  True, I do defend my children a lot because I'm their mother and their protector, but obviously not ALWAYS and especially when I'm thinking my child may be not giving me all the info.

It hurts to always be misunderstood.  It hurts for others to assume what's going on without them trying to consider my side of things.  My memory is so short, and in order for me to comprehend things, it has to be drilled into my head.  I expect strangers to sometimes not understand me, but I'm trying so very hard to get my family members to understand my way of communication, too, so they won't get defensive so much and so we won't have ....misunderstandings.

I found this really great article about dealing with Cognitive Dysfunction (what I have with my MS) here .
One suggestion they have is to control your environment and also control the way other's communicate with you.  I hope it helps someone else out there going through the same things.  I hurts so bad to be misunderstood, not to mention it messes with my mental.  Keep me in your prayers, please.

Tuesday, November 25, 2014

Gone But Not Forgotten, my furry baby Oreo Baby RIP 2001-2014

in the grass
she plays and lays and smiles

Gone but not forgotten, my dear friend furry-baby, ‪#‎oreobaby‬ passed away peacefully Monday morning, November 24, 2014. She had labored breathing the previous evening and was given her last rites by a few family members including myself)...we wished her well, sweet thing. Precious soul. Too many times she stayed by my side. I'm gonna miss her. Her life spanned 2001-2014. I know I will see my precious Oreo Baby again  Rest In Peace, my darling.. Until we meet again.
She leaves behind ‪#‎spanky‬ and ‪#‎kochecooper‬ and a host of family members and friends. Burial scheduled today.

It was so hard, Monday Novermber24, 2014. My husband was about to leave the house and Oreo Baby was on at the bottom of the stairs, resting from what we thought.  The way she was laying, I kind of knew she was gone but didn't want to believe it.  I asked hubby (Jesus) was she gone, and he was speechless.  His eyes began to water, but he could not more.  I sort of poked at her lightly with my cane.  My baby had passed on.

She would have been 13 years old in December.She used to lay in the grass for hours.  
Missing her is hard, but I wouldn't have expected not to miss her.  A few days prior to this, I'd been experiencing vertigo.  Just a bit of dizziness and it was nerve wrecking.  On Friday Hubby and I walked about two miles and the next day, Vertigo.  The whole time, Oreo Baby was by my side, ensuring that I was okay and letting me know she was there for me.  But on Sunday night, she was looking strange.  She looked a bit worried, and so we kind of knew she was trying to hold on.  Frantically my 17 year old son was trying to call around to 24/hr vet advice lines..but I knew what they'd say; that she was old and it was probably her time and if we wanted they could put her down, etc.  Nothing that meant anything to me because we knew that when it was her time, she would be with family.  Who doesn't want that?  And so that's how it was.

Oreo Baby had diligently taken care of me since 2007.  My sister Shawn Lynn gave her to my son Christopher and I, and she's been my number one caretaker ever since then.  Not having her here feels so strange.  She gave the very best hugs in the whole world, and nobody can compare to her at all.  I told one of my MS support groups ( I have MS and I'm fabulous" ) and I received over 90 comments with condolences for her.  I appreciate the support more than anyone will ever know.  

I still have to take care of Spanky and Koche Cooper.  With limited funding, it's been hard but they are my therapy.  Please help me out if you can :) 

Monday, November 3, 2014

They MUST know about MS and Me

I'm still shocked when people dont know what MS is or anything about it. It was quite a shocking day when I got diagnosed in 2004 with RRMS...blew my mind. As people learn my story, they learn how important it is to be aware. Aware about MS. 

Aware that There are others out there that have it. 
Aware that my diagnosis doesn't mean I don't matter anymore. 
Aware that I'm strong, but I DO have a diagnosis so when I don't show up, chances are that's why. And so much more :)

Having survived the initial car ride on that day, which was a miracle in itself, I must now thank GOD for being there with me always. I'm so appreciative to have been able to be a good mother to my children. I'm thankful to have had assistance when I've needed it and to be able to serve GOD with clear understanding.

MS takes my strength and energy away more often than not. But, again, I'm thankful to have less worry and wear and tare do myself because I'm finding solutions that are working for us as a family.

Thursday, August 21, 2014

No sorry

A good read from a fellow ms'er
Never Apologize
By Nicole Lemelle—May 12, 2014
I’m Dying!
Or at least that’s what I feel like.
MS tends to put me in a fragile wavering psychotic state.
Between the optic neuritisnumbnessfatigue, dropping things, tripping and falling I think I may be losing my mind.
My dream for normal used to be so strong but now it is slowly withering away. Each passing day brings me less confidence that I can get my former life back. I always keep a little hope alive but that may be because I can’t face the reality that I will never get back to normal again.
CLick here to read the rest......

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Thursday, July 10, 2014

Medical Alert

Yesterday had to be one of the most frustrating days I've had in a long while.  I went to a NEW shrink...and once again I got upset. Asking me dates and details that I clearly can't remember is frustrating. Then trying to change my meds that work and not giving me what I was a bust trip.


Support me and my quest to do better

Monday, June 23, 2014

The Pressing Seas

Depression is very common in people withmultiple sclerosis (MS). In fact, symptoms of depression severe enough to require medical intervention affect up to half of all people with MS at some point during their illness.
 Honestly I've been suffering from depression all of my life but it did intensify after I was diagnosed with multiple sclerosis in 2004 and here to recently in the last year or so.
Why Do People With Multiple Sclerosis Also Have Depression?
Depression may be the result of a difficult situation or stress. It is easy to understand how having MS, with its potential for progressing to permanent disability, can bring on depression.
Depression may be caused by MS. MS may destroy the insulating myelin that surrounds nerves that transmit signals affecting mood.
Depression is also a side effect of some drugs used to treat MS, such as steroids or interferon.
once I began to recognize sentence in my life everything seems to start collapsing right before my eyes. I think it affects my relationships and they suffer because at some point I just don't have the will to even deal with anyone or anything I get so sad I don't even want to go on....thankfully not about life it's just about the situations I'm in I know that they're depressing me I'm not at the harmony I know that man making my health fail and I don't even know if its worth it anymore. the main thing that the presses me lately is things concerning the children and the stressful Situation with my girlfriend's family and ex friends. 
What Are the Symptoms of Depression?
Everyone at one time or another has felt depressed, sad, or blue. Sometimes the feeling of sadness becomes intense, lasting for long periods of time and preventing a person from leading a normal life. This is depression, a mental illness that, if left untreated, can worsen, lasting for years and causing untold suffering, and possibly even resulting in suicide. It is important to recognize the signs of depression, which include:
Loss of energy
Feelings of hopelessness or worthlessness
Loss of enjoyment from things that were once pleasurable
Difficulty concentrating
Uncontrollable crying
Difficulty making decisions
Increased need for sleep
Inability to fall or stay asleep at night (insomnia)
Unexplained aches and pains
Stomachache and digestive problems
Decreased sex drive
Sexual problems
A change in appetite causing weight loss or gain
Thoughts of death or suicide
Attempting suicide
When to Seek Help for Depression With Multiple Sclerosis
If you have depression along with multiple sclerosis, you should seek help if:
Depression is negatively affecting your life -- causing difficulties with relationships, work issues, or family disputes -- and there isn't a clear solution to these problems.
If you or someone you know is having suicidal thoughts or feelings.

Where Should I Go to Get Help for Depression?
Once you decide to seek medical help, start with your primary doctor. He or she can evaluate you to make sure that medicines or another illness are not causing your symptoms.
Your doctor may prescribe treatment or refer you to a mental health care professional who can perform a thorough assessment so that an effective course of treatment can be recommended.
How Is Depression Treated With Multiple Sclerosis?
If you have multiple sclerosis, the first step in treating depression is recognizing that you are depressed. The second step is seeking help. These two steps may in fact be the hardest part of the entire treatment process. Once you seek help from a qualified health care provider, you will find that there are numerous treatment options to help you get back on track.
Several antidepressant drugs are available, but they must be used only under the supervision of a medical professional. Antidepressant drugs are most effective in treating depression in people with MS when used in conjunction with psychotherapy. Called "therapy" for short, the word psychotherapy actually involves a variety of treatment techniques. During psychotherapy, a person with depression talks to a licensed and trained mental health care professional who helps him or her identify and work through the factors that may be triggering the depression.

Warning Signs of Suicide
If you or someone you know is demonstrating any of the following warning signs, contact a mental health professional right away or go to the emergency room for immediate treatment.
Talking about suicide (killing one's self)
Always talking or thinking about death
Making comments about being hopeless, helpless, or worthless
Saying things like "It would be better if I weren't here" or "I want out"
Depression (deep sadness, loss of interest, trouble sleeping and eating) that gets worse
A sudden switch from being very sad to being very calm or appearing to be happy
Having a "death wish," tempting fate by taking risks that could lead to death, like driving through red lights
Losing interest in things one used to care about
Visiting or calling people one cares about
Putting affairs in order, tying up lose ends, changing a will.


Wednesday, March 5, 2014

Pain, Pain, Go Away

I'm hopeful about the new recently passed law in Georgia as it relates to our fight to legalize medical marijuana for MS patients worldwide, really. With my cognitive issues, I can't fully grasp what is going on, but I do know that the struggle is not over, yet.

It's enough to give you a headache.  Speaking of headaches, I'm so tired of having at least one every single day of my life.

The headaches hurt the most.  They make my eyes go blurry, even...and sometimes blind.  My husband gave me his laptop, which has a touch screen with zoom capability (yay), so it's at least easier to see if my vision is present.  My body pain is beyond imaginable, and I can't seem to NOT be snappy with people; but I'm trying to soften my demeanor.  With the amount of pain I'm in, my ability to deal with mediocrity, insufficient action, or anything else annoying is not very good.  But I thank GOD for my walk with Jesus Christ, and so I pray my way through this.


Sometimes I have to just make light of the pain that MS has caused me, but honestly it's not funny.  To wake up day to day in agony has been a hard pill to swallow.  At this very moment, my pointer finger on my left hand has a very sharp shooting pain in it, while my lower back is having spasms in it that hurt.  Also my elbow and shoulder blades hurt.  There's more, but I really don't want to continue to expand on all that's going on with me in the pain department, because there can be nothing done about it short of an one hour full body massage, which doesn't come easy nowadays.  Today, for instance, I've only been able to sit up no more than ten minutes without having to lay back down.  I'm working from the comfort of my bed today.  Everyone is around me, but nobody really COMPLETELY understands the extent of my pain.  My Chronic Pain. How could they understand that?  The MS Hugs alone are enough to drive anyone madd.

I have a supportive family, though.  Despite his own pain, my longtime caregiver/husband gave me a deep tissue massage tonight.  I feel so much relief.  If I could get that once a day for an hour, I'd be so thankful.  We're putting that on my list of must-haves.

I pray for all MS patients, and hopefully our pain will one day go away, especially if a cure is ever found.  Until then, peace, love, and light!

Sunday, January 26, 2014

My MS Fatigue ft Laura Kolaczkowski 's story

I was reading a blog post "Fatigue or Ordinary Exhaustion?" Posted by Laura Kolaczkowski—January 18th, 2014  And I found myself completely relating to the blogger.  Fortunately, I get enough rest because MS FATIGUE is quite exhausting.  As my life has turned to a new twist (realizing my dream), I must admit that I have slowed down.  This time last year, I was a burst of energy.  
  I wonder what I can do to "snap out of it".  My medication doesn't really help, as it is designed to slow me down anyway.  Staying calm seems to keep away serious relapses and most of the symptoms, and having a great support team allows me to fully function ( I do not have to drive, I do not have to do most things on my own, #marriedlife gives me full time help with the children, etc); however...MS Fatigue really is a drag.  My clients can appreciate the fact that they will not only be working with me, but with a team of professionals from my network that pitch in and assist for very low rates and sometimes even pro-bono!  I have MS, but MS does not have me.  

  When I have MS Fatigue, my family allows me to take a break and just rest/sleep.  Laura Kolaczkowski explained it best when she wrote     "Imagine you are in a deep sleep on your couch and you hear the smoke detector ringing in your house.  You stir a bit and then recognize what the offensive, blaring sound is coming from – oh no, you think, your house may be on fire and you should probably move, but you debate with yourself if you can muster the energy and you slip back off to sleep. That is fatigue – when you want to go, you know you need to go, and yet you can’t."  That's how I feel;I try to move during those MS FATIGUE moments, but just can't. It's a crazy feeling, best experienced during an impromptu nap, in my opinion.  And all other times, I go full speed, because that's mainly what I'm known to do.  Of course, if a smoke detector did go off, I would be up and out of the place...i'll crawl if I have to.  

 Read Laura's blog here