Day 15

Sometimes I go through the worst relationship issues with women, but I thank God for my husband Rafael "Jesus" Cooper who sticks by me no matter what and never abandons me. I've got real abandonment issues because of the relationship I had with my mother. Because she left me, tons of horrific things happened to me. I was no longer safe. I've forgiven her, but im damaged for life and it affects me horribly when a woman (or man) abandons me. Because of her leaving me, i got mollested, raped, acquired a drinking problem at age 14, and left home at 16. Growing up knowing that she was around but just not with me killed me slowly for so long.  I have flashbacks and it is a nightmare. Time heals but it's between now and "time" that's the difficult part. 

The break-up rate for spouses/friends where one has MS is over 90+%. There are several reasons as to why this happens but it is an ugly statistic that goes with this disease. In most cases, the healthy person just can't cope with the disease and thus the split. 

I get that. The statistics scare me and I'm always feeling bad about my special needs because it can be a lot and I'm afraid it will overwhelm people and they will leave me.  Most people cannot handle that my caregiver (Rafael, my husband) has to assist me with my daily living (assisted living). Because we are twin flames, our connection can be intimidating or cause insecurities. But its very necessary because those statistics scare the hell out of me and I've had countless "loved ones" leave me high and dry due to my disease and the extra assistance I require.

I'm thankful for my husband. He takes the mommy nightmares away. I try to minimize my needs so that it's not too much for him. I'm seldom without him, as he is the only safety I have (proven). He protects me, and I protect him. We protect everyone else in our family and tribe. He's giving up everything to ensure that I'm healthy. Anyone that truly loves us loves the fact that we do have this bond. It doesn't prevent us from loving others because we spread love and light, we just love together. Sometimes darkness from others shades our way but we are loyal and faithful to our family and our marriage.

I don't like what MS has done to me or Rafael. I don't like that we are looked at sideways because we are inseparable. Codependency isn't fun like it seems to those on the outside looking in. Even "insiders" dont get it and definitly don't always support it. I know that can be intimidating and make others feel neglected because we require so much solitude with each other, but it has to be like this because its safe and has shown that I have decreased tremors and seizures... And it's worth it.

Having security that I have someone by my side means everything to me. Having someone to look after me and my kids is essential. Just knowing I have Rafael makes me feel safe, and anytime that is comprised I have fears, anxiety, and symptoms begin to appear. I can't apologize for the way I have to live. I just want to be loved and cared for. I'm safe with him.

Safe from the statistics now, I'm focusing on my health, my husband, and my family. I'm pulling myself together and I'm 15 days off meds despite my personal issues with our former girlfriend. I'm glad we have our friendship but I have to keep a little distance to keep my health stable. I'm so disheartened by so called loved ones leaving me because they cant handle my special needs. So many "chuck deuces" at me and disappeared out of my life due to complications with my MS and the way I have to live (and love) in relationships. Everyone says they won't leave but they do. It's a lie they keep convincing me to believe, too. I wear my heart on my sleeve. I have accepted it all, but it pisses me off because I didn't ask to be this way but I AM. It's too bad if I dont want to live this way because I'm choiceless. I dont get to just walk away from it. If we love each other we should stand by each other and if its hard then we just have to pray together and work it out but leaving is like death to me and it is scary.

Life is filled with ups and downs and this too (heartache and disappointment) shall pass. Everyone in the healing house is rooting for us to find a cure, and I'm thankful. 15 days free in this crazy world is amazing. I am blessed.

Say no to stress.

Change is inevitable

Change is inevitable. I've been doing my Write 4 MS Awareness and spreading the word about multiple sclerosis but let's face it; not many of the people I've been coming into contact with know about this horrid disease. It makes me really thankful to those who have taken the time out to learn more about what I and the other 2.3 million people worldwide go through. More than 2.3 million people are affected by MS worldwide. Because the Centers for Disease Control and Prevention (CDC) does not require U.S. physicians to report new cases, and because symptoms can be completely invisible, the prevalence of MS in the U.S. can only be estimated. I have MS, my friend Nicki J has MS, and this one guy at a wedding I attended last year has MS. Oh, and I have an older cousin with MS. And my husband's new Facebook friend has been newly diagnosed with MS. It's not as uncommon as it seems, but because its an "invisible" disease, its not as well known as cancer, heart disease, and diabetes.

 "There are now FDA-approved medications that have been shown to "modify" the course of MS by reducing the number of relapses and delaying progression of disability to some degree. In addition, many therapeutic and technological advances are helping people manage symptoms. Advances in treating and understanding MS are made every year, and progress in research to find a cure is very encouraging" is what the national ms society says, but from what I've experienced, its all just about doping us up with medications that cause worst long term effects than the disease itself. From fitigue, to chronic pain, to insomnia and paralysis and tremors and muscle spasms,etc. Enough is enough. Change is inevitable and I'm looking for it with a magnifying glass and microscope. Please look with me.

Freaky Friday

My Friday morning started off really freaky. On top of my pain, the fact that two different pharmacists can't or won't fill my prescriptions, and I'd lost my Zanex (the few I have left), I ended up losing my glasses. I'm in a car with 5 other members of my family having a panic attack and trying to maintain a cool composure. I'm screaming inside of my mind hoping I don't throw up. I immediatly went into one of my MS support groups and said "Sorry...gotta vent or I will burst out in tears. I don't want to talk to anyone but I have to because I have to get my 18yr old enrolled into college. I feel lightheaded. Ugh".

Immediately support came and my online friends helped me calm down. My husband also told me to just relax. I have a really great support system most times. I'm blessed that way. And my glasses were in the car near my foot. Ain't GOD GOOD?!

Misplacing things are a common occurrence in the MS Community. "White matter is the brain region underlying the gray matter cortex, composed of neuronal fibers coated with electrical insulation called myelin. Previously of interest in demyelinating diseases such as multiple sclerosis, myelin is attracting new interest as an unexpected contributor to a wide range of psychiatric disorders, including depression and schizophrenia.
This is stimulating into myelin involvement in normal cognitive function, learning and IQ. Myelination continues for decades in the human brain; it is modifiable by experience, and it affects information processing by regulating the velocity and synchrony of impulse conduction between distant cortical regions. Cell-culture molecular mechanisms regulating myelination by electrical activity, and myelin also limits the critical period for learning through inhibitory proteins that suppress axon sprouting and synaptogenesis." Is what I read in a wonderful article called White matter in learning, cognition and psychiatric disorders
By R. Douglas Fields. Great article , and you can read the rest here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2486416/ .
It only goes to show that by MS being a demyelinating disease I'm pretty much like this until we find a cure. I mean, how in the world do you get to the point where you are demyelinating? Who does that? Us Ms'ers I suppose.

My husband's  brother and cousin are in town. I'm socially awkward and I freak out in crowds, but I sure hope I can hang out with them. After everything was said and done, I got home and looked for my meds and found them! I tried anither pharmacy and they filled my pain prescription. I still dont have my new anxiety meds or my headache meds. Something is better than nothing unless the something is bad, but right now i'm so happy.

But still, I'm fully aware of my age and my limitations. I'm 42 so I'm still young. But I'm disabled with MS and in a slight relapse. As my husband pointed out today, "We're disabled". I'm going to be realistic, though. If I can't go out, I won't. But if I do, I have my my missing meds.

Stuck Like Chuck

I've experienced more cognitive issues in the last past years since 2013.  Different patients have different issues when it comes to cognitive issues. For me, I'm currently having difficulty with planning and problem-solving and tending to become overwhelmed and inflexible when a task is too complex. I don't have it in me to have flexibility to generate alternative solutions. I'm in a horrible and confusing "MS FOG". 

I'm glad that at an early age of five, I was tested with a high IQ of 142. Yes....me.  I suppose that’s why going through this isn't as hard because I understand fully what’s going on, even in my hazed mind. Some MS'ers are unaware of their difficulties and have problems monitoring their own behavior. Not me: as soon as I notice it I put my support system on full alert to know what’s going on and to stand in for me. Comprehension of the impact of their behavior on others may also be overlooked by some; by me I know it is hard on my tribe and my business family, but we are in this together.

I am a bit tired of having brilliant ideas that I can't execute. I need more assistants and interns to train in these life skills and wisdom/knowledge I want to pass down. It's hard because I do need a team to get things done for me. I want to do so much but can only do so much. I thank God that I'm able to be a mother to my children and be able to raise them in a multi parent household as opposed to a single parent one. In my family,  we are here together for life....life partners... a tribe dedicated to raising our young in the best environment ever. We are homeschooling, and despite my cognitive issues, I'm still able to contribute greatly to my children's education.  I've created a team that helps with academics. And I concentrated on their enrichment and cultural studies. With home figured out, I still need help with other things...living assistance. Like for instance I'm in a fog when planning meals, and that sucks because I have to waiting first others to prepare my meals.  I get ready time send off an email and it might take me all day or days even to get that done because I get "stuck".  As powerful as I am I feel helpless in my mind at times.  Even with this post, it's day three in the drafts.

 

I won't complain. I'm quite intelligent so when I'm in a fog relapse, I just take it as a vacation.  Playing gtaonline  ps3 is a great help and being a minister and volunteer life coach is easy for me to do...second nature even in the fog.    I can't let this MS beat me and fog or not, that high IQ is still there somewhere in the damaged myelin covering of my mind; just being utilized in a different way.  

http://www.gofundme.com/write-4msawareness

Getting over it

Lately my tolerance level is bad. Little things trigger me into feeling sad or hostile or despair,etc. It's one thing to have racing thoughts, and another to have utter annoyances that darn near drive me  nuts. I'm trying to practice "getting over it" but in all honesty I'm getting fed up.

Like, one day I was playing a game. Someone wanted to play my hand so i said "sure". They scored lower for me then higher for someone else and I got sad and hurt I now get sad super quick or mad or scared or nervous.  I also have PTSD.  Anyway, because I could have played my own hand and got a better score, it actually hurt . I felt like I was wronged,  not on purpose but definitely directed in the wrong way. . Like normal and I noticed the scoring system.  It went all bad when my scores weren't what I wanted them to be, we played as a team. I feel "spoiled" because I get ready to throw a temper tantrum....not outloud but inside of my head. I have no patience for my friends. I really want time alone away from everyone because people can't help but to piss me off. Every little thing requires me practice "getting over it". My thing is, lets deal with it. Everyone says MS patients over-react but i think we react as we should and if anything we have to turn down and tell people what's really going on. Oh, and there is Xanax to save the day.....and I hate meds. But That's what people push us towards. "DID YOU TAKE YOUR MEDS", they ask. I want to reply "Yes, thank-you. Did you take Your meds?" But sadly most are not on meds, just overly judgmental.

MS has me super sensitive.  And people get mad when I'm sensitive so I'm learning to keep quiet and just let it drive me crazy inside of my head. 

Such is life of a MS-er

http://www.gofundme.com/write-4msawareness

TO BLESSED TO BE STRESSED

TODAY IS A GOOD DAY SO FAR.  I'VE HAD THIS RESTLESS REST THING GOING ON.  HUBBY WENT TO WORK AND BEFORE HE LEFT, HE SAID "IT'S SATURDAY, SO YOU SHOULD BE ABLE TO GET SOME REST TODAY'.  INITIALLY, THAT THREW ME FOR A LOOP; BECAUSE I WAS THINKING, "WHEN DON'T I GET A DAY FOR REST".  THEN I REMEMBERED....

My day to day is often quite hectic, even though it's not meant to be.  Stress is the one thing that I do on a day to day, oftentimes not even meaning to.  Thoughts about children, bills, what's for dinner, when do I get another writing gig, who's gonna walk the dogs, etc.  LIFE seems to create these little stresses, but I thank GOD for those who love me running interference so that stress won't overwhelm me too much.

This question was posed to a group of MS patients to complete:  When I get stressed out, it affects my multiple sclerosis by ____.

The answers are what I'd expect, living with MS myself.  

Terri says Irritable, weepy, shaky, weak, numb and upset that no one gets it!

Sally says Dizzy and fatigue!!!

Gail says Giving me a really bad headache and neck pain and blurry vision.

Catherine says Making all my symptoms come out at once: can't talk, tremors, balance, confusion, depression, tears, you name it...

Paula says Causing a trigeminal neuralgia attack (stabbing electric shocks).

CarrieAnne says Cog fog badly, weak, fatigue and muscle spasms right between my shoulder 

blades all the way down backs of my legs. Happens very quickly.

Judy says Making me exhausted and making my pain level go off the charts.

Mark says Overall fatigue and anxiety

Danny says Muscle cramping and vibration threw body

Mary says  I start talking slurred

Storm says  Headaches and MS hugs (intense tightening around your chest, along with pain and a burning sensation.).

Stacy says  Right eye pain back to my ear, brain fog, memory loss 

Darrin says Makes my legs weak and throws my balance off, and adds to the constant pain i already have!!" 

Paula says Makes my esophagus spasm, do swallowing is difficult,.and i also get too much saliva

And there were a host of other answers.  For me, when I get stressed out, it affects my multiple sclerosis by giving me additional pain, headaches, seizures, slurred speech, and everything everyone else said.  Now that my husband works outside of the home, I tend to stay even more to myself because, as you can see, stress is not something to play with. What this means to me is that my circle of friends and family that can come around is quite limited.  I just don't trust people enough to allow ME to be compromised by THEIR issues.  I'm learning to overcome my fear of people because, if it's mainly in my mind, I can overcome it.  Who knows?  If not, I've lived with MS and over the years it has slowly taken a lot of the "extra" out of my life...so that can't be all bad.     

http://www.gofundme.com/write-4msawareness