HURTING LIKE HELL

So I am finally out of the PTSD episode or series of episodes that I was going through last week and I feel a lot better however I'm having a lot of chronic pain right now that is not making me feel better at all.   I have been getting exercise I want at least 8 blocks a day, I say that because the park that I go to is 2 blocks to and then two blocks from and then I do that again later in the day another two blocks to and 2  blocks from so I'm getting exercise for sure.   I don't feel like I'm overdoing it but even walking feels like I'm overdoing it.   I did a few stretches but not anything serious because I'm in pain and I get that exercising will probably help the pain but from what I'm experiencing it is definitely not helping the pain.

I'm on a muscle relaxer called after baclofen and it's 10 milligrams tablets. But those are prescribed for twice a day and because of my paranoia against Pharmaceuticals of pharmaceuticals, I only take it once a day on the days i'm brave enough to take it which is probably why I'm hurting.   I really don't know how to get past the paranoia in order to get treatment.   I am going to get some food assistance since primarily how I treat my conditions are with diet and herbs.  Because I'm still considered low-income with all of the expenses I'm not eating as healthy as I need to.   Eating unhealthy is probably causing me to not have enough nutrition.   Not having enough nutrition means that my body isn't getting what it needs.   Hopefully my case manager will be able to assist me with this tomorrow.   I'm going to make a list of all of my concerns and divide that list out to different people that handle those particular situations and my health case.  

On June 29th I have two doctors appointments the first one  is my psychologist,   and the second one is my primary care physician's office.   Physician's office because I really don't even know who my doctor is. I've only seen them once or twice.   the purpose of a primary care physician visit is to get a referral that to neurology.   There is nobody monitoring my Ms or managing it except for me.

Another thing that's causing me pain is my depression.   my daughter's family is not returning my calls like I need them to and that was the agreement.   so now I'm worried all of the time.   speak with my daughter but I need to speak with an adult that's caring for her so that I can follow up,   and I just feel like they're lines are too busy to communicate with me.   that's not going to work with me.   I've had my children all of their lives for this is the first time I've ever been away and I really expect everyone to make this as comfortable as it is as it can be for everyone.  If I have to go through it as I rather just have my daughter with me.  There's just so much I don't understand.   I'm still so upset that she didn't even make it back to me on the day that she was supposed to because she didn't get to her proper tutoring during school year and had to take a summer course,  which meant that she couldn't come to see me on our agreed date. Now her family has decided to go on a cruise which I'm happy that she can go because I can't afford a cruise but I send money every month and I can't do anything and they are really doing a lot of stuff except for calling me.   We're definitely going to have to have a meeting but first I'm going to get my daughter because I can't take any more anxiety about this situation and I never would have agreed to it had I known that I would have uncomfortable moments like this so many miles away from the ones I love.

I made a video to basically document my pain because with my memory the way it is more than likely I will forget and not have an opportunity to get help from the doctor.

One of my good friends told me the other day that I was being Manic and then I realized that I was being manic and so I'm going to have to address that with the doctors as well.   Love and light peace and blessings and  Please support MS and PTSD awareness.  PS, that’s my husband in the background playing PS4.

Multiple Sclerosis Phoenix Healing Center Retreat Program

UPDATE:  THIS WAS A SCAM COME TO FIND OUT :(

After finding out the wonders of cannabis, I wanted to share generously with anyone suffering with MS whose still able-bodied.  I made a post today about the what we've been making plans and ideas about...a Multiple Sclerosis Healing House 'Phoenix" Center. 

"I'm looking for a single female MS patient 21 or older (no couples, no children) who is interested in living in a MS Healing house as a roommate. This retreat is peaceful and we don't want to be distracted by any relationship drama, which is why I say single. Sometimes you are in a position where you can take a break from everyday life, just pay the bare minimum, and live among the pure. That's where we are.

Your retreat includes a Private room and shared bath. All residents are MS patients on disability and are each others emotional support (currently there are two MS patient residents). Its a real Zen enviornment. We are on the way to heal ourselves naturally with organic diets and natural plants and herbs that we can grow ourselves including cannabis as well as exercise, therapy, and more. With new reported discoveries being revealed all the time, we know that cannabis is reversing health issues and making gelreat strides in possible cures.

Arts & Crafts, cooking lessons, long scenic drives, sewing, pottery, dance, fitness, yoga...the relaxation of being in your own environment is second to none. This is a time to make your dreams come true when it comes to your health regimine.  We invite others to our home away from home in search of a cure. As we treat ourselves to edibles that relax our anxiety, pain, and more and group therapy to end the madness, delightful walks, outdoor photography, massage therapy, movie night and more the experience of getting better will keep you coming back for ... even more.

It's for the patient that wants better for themselves. It's for the patient that feels like no matter what they say, there has to be a better way (a natural way). This roommate obviously would need to be in or be willing to relocate to Colorado for this to be a reality.

The room is available on a month to month basis based off of each patients individual needs, and each patient has individual goals that they are supported in meeting. Its a place where the MS patient doesn't feel alone.

This is not a nursing home, just a healing home. It's a home where we can support one another and slowly change our MS around by eating right, living stress free, exploring the healing miracles of cannabis, and grow our own nourishment.

I have been now 18 days on our program and I'm already experiencing benefits, AND I'm not taking meds (but I have them on standby). Though not everyone is able to completely eliminate pills, the "treatment" does help you slowly eliminate them and replace with natural remidies. It's for people that want to get better, not those who have given up and unfortunately not for people that can't do anything for themselves. For those that don't qualify, we offer off site options.

The scenery is beautiful and fantastic. If you look afar, you'll see gorgeous mountains. There are beautiful fields and plains. The air is crisp and clear. The weather is nice summer warmth. I've seen the most beautiful sunsets here. Tranquil. It's quiet here, and very therapeutic. We will be gardening, growing fresh fruits and vegetables. We also foster kittens, dogs, and birds. Pet therapy is great for MS patients, and so is giving back.

NOW TAKING APPLICATIONS for an immediate move in date. 

We have a space with ONE 12' x 13' furnished bedroom, (with a queen sized bed), available for someone needing to come to or who is already in Colorado for access to our Medical Marijuana program. ONLY a legitimate patient will be considered. I need someone who is NOT totally disabled, has a vehicle, an adequate source of income to cover all their expenses and who wants to participate in the functioning of this house.

We have a very unique situation for the right person. We have established a healing household and are seeking someone who will fit into our small community. You must be at a point where you WANT to heal yourself. Staying stuck for sympathy will not work here.

If you know what it means to be awake, are on your own spiritual journey, want to be part of a group of people who are taking care of most of our medical needs in this alternative way, you might be the perfect one to join us. We are three patients with serious medical conditions who are working together for the benefit of the entire household. Our goal is to be as self sufficient and sustaining as possible. We have an organic, non-GMO, non-addictive behaviors including alcohol, mindset with everything we are doing.

The house is 30 minutes from the Denver airport in Bennett, Colorado, 20 minutes from the eastern most edge of Aurora, Colorado.

Passing a background check is required, ($40 fee mandatory), and an in person interview so we both may meet the new prospect. When approved, one month's security deposit and one month's rent are required before moving in. This rental will be on a month-to-month basis for a while to determine compatibility after joining the household. You will need a vehicle, be capable and willing to participate in the activities of running the house with the rest of us.

Share kitchen, living room, family room, bath, wi-fi, satellite, on street parking, other facilities...
Sorry, no pets as I have a service dog and several other therapy critters.

Rent is $500 PLUS split utilities FIRM.
To apply click here"  and I posted a link to the property Craigslist ad.

MS is such a stressful disease, and I just wanted a place of "our" own because sometimes the outside world just doesn't get it. Because we are disabled, the roommate patient would need to be able to hold their own financially. Patients receiving disability checks are better for this house because they don't have to worry about not being able to pay rent because they have guaranteed funds. This is independent assisted living, which I find works best for us MS patients.

But before moving forward, I realized and I have learned to live in peace and I know stress causes relapses so we do our best to keep stress down here. Since arriving in Bennett, where this house is located, I've sensed certain stress. Ring worm is in the house from the animals, and neighbors are not neighborly towards each other. And gospel music is hated. Smh.  And non alchohol seemed weird seeing as there was beer in the fridge all the time. So I'm not sure now. Its too early. 

Wherever I decide to do the MS House, here it somewhere else, For those who can't go outdoors, there will be indoor activities. Rest is accepted and encouraged. For those who can go outdoors, we do take trips to the wonders of Colorado such as restaurants, tours, mountains, and more.

I'm gonna do this. Phoenix reminds me of rising and the meds I take is called Phoenix Tears, so we shall see....dream still in the making.

Awareness- I have to talk about it more

I'm speaking more for my needs. These MS suicides are so horrible, and I feel horrible that I "get it". I'm speaking out more so it doesn't get that bad to me. If I ask for help it's because so much has to be done and I can't be a one-woman team anymore. Not with cramping fingers, cramping and stabbing pains throughout my body, a back that feels broken most times, "fog" / "confusion"...and extreme paranoia about the side effects of the meds I still have to take. It's a lot. People say "don't think like that" but that is our reality, mainly so we won't be a burden on anyone. I'm just being honest. So many times we are frantic because we feel alone because people don't know how to take our honesty, they somehow get offended leaving us to feel even more alone. Nobody wants to help us and we can't really understand that, we just feel like crap all the time and worthless.

Social Security did not give a cost of living increase for 2016. I Started working in 1987. Got diagnosed with Multiple Sclerosis 2004. Had to retire in October 31, 2006. Tried to go back to work because my savings and 401k was running out, landed a job with the government april 2007 AND was awarded social security that same month. I had to make decision so I worked til December 2007 and the government began layoffs, not renewing my contract and my decision was made when I once again began to relapse. After or king all my life, this was a HUGE adjustment.

I still try to work when I can because its too hard living off disability and am building a team we can continue being successful despite MS. MS has progressed in me mainly with mental/emotional, energy/fatigue, chronic pain,and cognitive issues. Financially it's been Devastating to my entire family. My prayers to my MS Warriors that fight this fight of survival along side me every day GOD blesses us to be "awake". I smile behind tears because I AM trying and I WANT TO LIVE. Even though the pain and the woes are telling me its not worth and even when my mind and emotions tell me I'm not worth it to anyone, either. Under 10 people actually care, in my mind and perhaps in reality (I truly don't know anymore), and so i'm here, still fighting for...US.

It's so hard to talk to people. I ask one question and it turns into a whole heated conversation and ends up with me being at fault where honestly there wasn't a "fault" involved. Okay...whatever. Then I'm asked a question and I try to follow up like okay, what are we doing..and it turns into yet another issue. How can people live like this of they can't communicate? People can try to blame me but I know it's not me. I take meds because of them. Because people don't know how to be non aggressive with others. I'm gonna have to remember I'm 43 and that I do have good sense. People Catch attitudes when you ignore them because they cant have conversations the right way. Yep that's right, talk to me crazy and you can just talk to yourself. Meds put me in lala land, take my whole day away, but that's okay...I will have another day, God will make sure of it.

I always accept help as it comes, I have no pride issues, I prefer to work for it. If anyone needs online promo or even an article written about them and their brand please share this link because my team and I are raising money and awareness about Cancer, Multiple Sclerosis, Lupus, Kidney Disease, Fibromyalga, Diabetes, HIV/AIDS, Sickle Cell Anemia, Heart Disease, and overall health and we do work for donations https://www.gofundme.com/write-4msawareness . Help us out heart emoticon

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.

Water Bill.

I received a notice from social security telling me that basically I can work no more than 80 hours per month and can  only earn under a thousand dollars a month.  Trial Work Period is what it's called.

 The problem with Trial Work Period is that Multiple Sclerosis is unpredictable at best. I cannot rely on my brain and body to do what it's supposed to do when it's supposed to do it or even begin to assume how any given day will be.  I encountered many problems when I worked outside of the home with my health being unstable.  Employers do not take kindly to a lot of call outs or having to leave early.  Even if it's for doctors appointments, the attendance policy that jobs have will not allow me to keep substantial or gainful employment. Even when thinking about working 20 hours, you have to take into account that I'll need frequent breaks, and my brain and body may not be up to par.  I've found that my social issues make it nearly impossible to keep a steady job.  Even in self employment, since my fatigue and cognitive issues are present, it'll be a definite losing situation to be at a job outside of home.  The symptoms I experience with MS make it hard to even work at home.  I can't concentrate enough to get tasks completed, which is why I have assistants to lend me assistance.

  Meanwhile, bills are still due.  If I can't work then I can't eat, right?  Thankfully, I'm married and I've learned how to work with my disease. We have to budget really well to stay afloat.  I know it takes more hands than just mine to get things done.  My husband stays home with me to ensure I'm well, physically and mentally.  I've come to trust him with my life, which was always hard for me to do.  I pray for him and continuously hope that he doesn't give up on me.  There are so many MS patients that don't have the support that I have.  Even when social security is confusing me (so many notices and in reading them, I can't fully understand what they mean), he's there to keep me calm and tell me not to worry.  And that helps.

  I can't help but to worry sometimes.  I'm a disabled American who doesn't have anything any more.  I've had to start over, and that has not been easy at all.  With so much of my memory gone, I'm so thankful for those who remember and know me so that they can fill in missing pieces of my life.  I'm  honored when people think highly of me.  I've always tried to be fair.  I'm all over the place with my thoughts right now are everywhere because that's how my brain works.  And again, with my brain being all over the place, I can't work outside of the home or even in the home on something as steady as a job.  I can do projects, and I can manage them to an extent.  I thank GOD for my imagination because it's gotten me far in life.  It gets me as far as I'm willing to let it take me.  

  My message to anyone living with MS is to fight and learn and share the information. Bills are there and they are due, so  I advise anyone with MS to find deep in themselves creative skills that they may be able to be hired for, and to never give up on their dreams.  

#randomthought And honestly, we all need to pray for water; that we will stop being charged for things that GOD provided for free.  

Support MS Awareness today. 

TRAPPED

It's funny, I've always been such free spirit. Being human and having Multiple Sclerosis, however, has grounded me. I'm humble. I've fought for this. I fight for this. LIFE. ALIVE. AWARE.  AWAKE. INVOLVED.

Sometimes I think of how lucky I am. My middle son just graduated from high school and though he's a bit upset with me, he know's how much I love him and I know that I'm doing the right thing. My oldest son is 23 today, and though he has to spend this day in a time where the struggle is real, he knows we do our best with what we have and that we will be here for him in the end.  My daughter is still sleeping, and I want her to get some rest because the day may be long and worn.  My other daughter is having breakfast, and getting in gear for the day.  My girlfriend is here beside me working diligently on her phone.  My husband is off to the market to help us get restocked on food.  This is calming me...the fact that I know where everyone is and I know that everyone is safe.  When I don't know their status, I feel ill.  Isn't that crazy, that my body would attack me for not knowing that my family is alright?

Even with all my loved ones near my side, I cannot get rid of this headache.  My prescription headache medicine costs too much.  My insurance company won't cover the full cost of my medication,  Fioricet. which costs $145.79 with my insurance. We've taken cut-backs and done what we can, but affordable health care is still an issue.  I'm still trying to come up with utility bill money because where we live there's a leak that the landlord has not fixed yet.  With so much going on it's a wonder I'm not in more of a relapse, but I'm thankful and I appreciate GOD's grace.  This is hard.  And it hurts.  I'm not talking about a regular headache/head pain, either.  These are pains that go through my head like an electric lightening rod.  Surges of pain (like brain zaps) go through my head and I can't afford treatment to stop it.  Vascular or migraine type headaches have even been reported as the first symptom of MS.

When you have multiple sclerosis, also known as MS, the signals between your brain and spinal cord go awry, which can result in pain, fatigue, and reduced mobility as the disease progresses. Some people with MS have only a few symptoms of the disorder, while others have many. You also may find that your MS symptoms come and go while others find them long-lasting. "What's surprising about MS symptoms is that they can affect so many different functions that people rely on every day in their lives," says Rosalind Kalb, PhD, a clinical psychologist and vice president of the Professional Resource Center at the National Multiple Sclerosis Society in New York. "Some are physical, some emotional, and some intellectual. We tend to focus on the ones we can all see, but many people may be living with a variety of symptoms that just aren't apparent." Here are some less obvious signs of MS.

People don't realize how hard having Multiple Sclerosis is. Alongside it, I have chronic pain that keeps my pain level at at least an 8 at any given time.  And fatigue.  And emotional ups and downs.  My entire body hurts, so i'm on all kinds of pills for pain but none of the pain pills stop my head pain.  For three years straight, I had headaches and took BC powder three times a day or more to ease the pain.  I went on a 45 day organic raw diet and poof: headaches were gone.   Money got tight and I had to eat a lot of non-organic foods, and now the headaches are back.  I'm on six different medications and not one will ease my head pain. I don't have money to buy BC Powder.  This is not a good day for me.  This is not how I wanted to spend my son's birthday, but this is where I am.

I feel trapped inside of my mind.  I used to be able to afford having Multiple Sclerosis, but now it's hard to earn any money while being disabled. I'm praying someone will help me pay for the headache medicine.  I'm trusting that my doctor is recommending the best treatment for me.  I just need a little help getting it.  

I love you

One thing I've always had was the opportunity to have companionship.....With that being said....  

I saw this picture two days ago and immediately thought of that horrible day in 2004 when my cousin Sandy and I received my diagnosis with my then boyfriend "D" [I won't say his name out of respect for him and whatever his current situation is today.  He's a good man. ] in the hospital .  As soon as Dr. Richard Stappenbeck [ who is currently still my MS Doctor/Neurologist/Healer/Shrink/Friend (I can say friend because he really is one of the few people I love and trust).  ] introduced himself and gave me the horrible findings of the MRI scan that displayed at least seven brain lesions that were the result of Multiple Sclerosis.  As much as my memory is faded nowadays, I remember at some point looking at "D" and in tears slurring that I know he didn't sign up for this.  He reassured me that his love was with me and that he wasn't going to leave me because of this.  He kept his word, too.  We lived together as partners until I left in 2006 when I felt our relationship could go no further.  I  honestly didn't want to die unhappy, and that's what I was even throughout the love.  GOD had another plan.

Nine years later I'm where I belong, with whom I belong.  This love, unlike that one, is a premeditated commitment because I came into it already living with MS.  I came in knowing already what kind of life I needed to live, knowing what kind of environment would be best for me, and knowing GOD's plan for us.  Anyone who wants to be in a relationship with someone living with MS should already know the physical complications that arise not only from MS, but also with the psychological sub-diseases that come about or are amplified and the emotional roller coaster that is MS.  

Those who are in my life know that I love them.  One of the most sincere things I can say to someone is "I love You".  Love holds weight.  Love is why sometimes I'm able to come up out of my hard angry shell and allow light to come in even if it's coming from the darkest corners of my mind. I may not be able to do things that people would want me to do, but I am able to love them.  I love you.  I'm able to live a complete and satisfying life because I'm secure in knowing the people whom I give my heart to return my love with theirs because they have chosen to love me despite my illnesses.  And that's BIG.  It's HUGE.  It truly means a lot. 

I suffer from PTSD.  I had a mental breakdown just this morning, so as casual as it may seem, I'm really struggling with things.  I have these breakdowns a lot lately, unfortunately.   I hate this, but my loved ones love me through it, which helps me love myself more. I mean...I could have acquired PTSD from any number of occurrences in my lifetime that would be considered traumatic.  As far as Multiple Sclerosis, yes...receiving a diagnosis of having a life threatening illness and the promise of having more severe medical conditions arising from it is pretty traumatic to say the least.  My inner-environment is so sensitive that any little thing could throw me into a post traumatic stress disorder attack, or worst.   

Sometimes I push loved ones away.  I need a certain level of personal space and honestly anyone who wants a relationship with me has to understand that the primary person in my life is my husband, Rafael, whom we call Jesus.  Jesus and I are best friends, and he is the only person I can feel safe with laying my head down to sleep.  He made the commitment to me that nobody else could make, and for that I love him always.  As I become more and more disabled (for the rest of my life), he's promised to be there (for the rest of my life).  I dedicate my life, and this blog, to him, my wonderful husband.  

http://supportmsawareness.blogspot.com/p/donate.html

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

Hand Eye Coordination And The GTAV

I've been working on my hand/eye coordination.
Its been a long year and I'm so frustrated now because I am trying to teach my husband HOW to work with me when I am learning something. He didn't go to school for working with patients with disabilities so sometimes he forgets to listen to me and not be defensive. 

Anyway...I chose PS3 GTA5. I know that's a tall order, but I'm used to tall orders and I have always been a winner. My motor skills and hand/eye coordination are terrible now, and I'm frustrated because he is not a patient teacher right now. He used to be, though. He is going through a lot.
I wish I had a another friend who knew how to play that has experience working with MS patients or patients with motor skill problems. As much as I try to keep my care and training private, its not worth the consequential tension that comes along with it.

I will overcome all of the obstacles I face. Alone or with help. Having never been a video game person, its frustrating anyway. It would be for anybody. For me the stress of  not knowing how to navigate in the game causes me panic attacks, but it reminds ne of real streets, places,etc that I get lost in anyway..but the only way to get through it is to get through it.

My husband loves me so much. Its difficult to be caregiver AND spouse. I should know because I take care of him too, and that's not easy. We care for each other. Nurturing is a part of our relationship. As most MS patients know, therapy is important so I will be scheduling another marriage counseling session. We missed our last one due to miscommunication (that would have been our first session). I am a firm believer in preventative therapy. I want us to have therapy so that we can learn healthy ways to approach things at times when things get challenging and also because therapists keep things confidential and.our marriage is private.


Today I made new strides in GTA5. My caregiver is working with me, teaching me the game. I hope to accomplish learning how to read a map better.  I think the hand-eye coordination is not improving yet. I found a shooting range on the game and tried to do target practice but again...hand eye, short term memory, and more frustration. I ended the game early because by then it began to cause an issue with he and I. He doesn't understand that I am playing fir a cause...too overcome my obstacles that hold me back from playing harder in LIFE. Yes, I am going for rank but more-so going for learning how to do the life skills which include memory, technique, skill, hand-eye coordination etc.
Work hard. Play hard.
MsAwareness
http://www.gofundme.com/write-4msawareness

I will whisper louder

In autoimmune disease, the body’s immune cells mistakenly attack and destroy healthy tissue. In MS, it’s the fatty protective sheath around the nerves; in type-1 or juvenile diabetes it’s cells in the pancreas that make insulin; in rheumatoid arthritis it’s tissue in the joint.

Currently, the main treatment is to suppress the immune system, an approach that can leave patients vulnerable to infections and cancer. There are shots that are intended to redirect the attack on cells by tricking them into attacking injected protein.  Still, these are "ATTACKS" and most everything that is out there to take has horrible side effects.

I'm still off the shots.  I removed myself from that treatment therapy in 2009 after a MS relapse almost made me lose my kidneys, and the shots did not stop it from getting as bad as it did.

I hope there is other treatment.  I ignore my MS a lot because my caretaker is also my husband, and no matter that I trust him the most, it's sad to see him have to live with my reality, too. I hope to find another caretaker in the future to give him some time to just enjoy having a wife (not a patient).

The pain is on my right side (the same side that went paralyzed in 2004) .  I can't really get a full body massage because my husband has now began to be in a lot of pain, too.  I sometimes wonder if he has MS, too, or if he is just experiencing some of my symptoms (we are incredibly close and have a really tight bond), or if he has something altogether different going on.  We are each other's caregivers and really always have been.  But this pain is too much for me to bare too much longer without repeated relief, which is what my prescribed treatment was since I'm no longer on all of the meds.  I'm supposed to have intense massage therapy to keep me out of most of the pain, but now I feel helpless.  I often cry when I'm alone, just to get it out of my system (the frustration).

I feel like my condition is getting a little worst right now, so I want to make sure I blog while I can still type.  Nobody knows what the future holds.  I hope mine is one that's still happy and loving, just not so much pain. http://www.gofundme.com/write-4msawareness