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Sunday, June 28, 2015

Who's hurting for me?

1:26 am. This is my quiet time supposedly. But it's not. I'm an insomniac with chronic pain. Who's hurting for me tonight? He's tired and worn out from everything. She's stressed and fearful of the next moves. And I'm in the middle knowing there nothing I do to make anyone's situation better as I struggle with pain in my legs, paranoia from sleeping in a different room, fear because I did not have my familiar things around me, and so much more.
Yet I want to be everyone's answer to their prayers of needs and wants, desires and requires, and all the in between. We all hurt for me.

9:45am All is well with the universe and I have to know that. If not the panic of it all will fail my health. This...ugh...can't even have normal emotions because of this MS. But all is well in the universe, and I have to know that.

Meditation begins...

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.

Saturday, June 20, 2015

I'm Considering going postal

Please don't be alarmed, but I'm considering going postal. Let me tell you why.

It all started (this time) on last Tuesday. Mika the driver picked us up to take us to my neuro. I didn't have an appointment only needed to pick up my prescriptions. Most of my prescriptions can be called but Norco and the new headache medicine are considered to be "controlled substances".

Mika The Driver then took us to Walgreens to fill the scripts. After a few moments the pharmacist said that they were not in stock of my prescriptions and to try CVS. I've been through this before at this location, so I went to a different Walgreens, only to be told the same thing.

I went back home because Mika had another fare, prescriptions in hand unfillable. I was sad and frustrated but I had a few pills left from the previous month.

On Friday I went to the Kroger near my husband's old job. They were able to fill the Norco, so I filled it there. I was frustrated that the others couldn't be filled, but 1 out of 4 was better than nothing. Then we went to a Publix and they said they couldn't fill the prescriptions and the pharmacist suggested that I ask my doctor to order me a lesser prescription of Zanex (1 mg instead of 2) with more pills per dose. Or to try CVS. That's stupid. Whatever, I leave.

Today is Saturday. We went grocery shopping at Kroger. The pharmacist there filled my Restoril and gave me a weeks worth of my Zanex and said I could pick up the remainder on Tuesday, which is fine by me. The suggested CVS for my new headache medicine Bupap Tussi Caps (Dexpac) . I thanked them and will go back Tuesday.

When I first got diagnosed with MS, I used CVS. I only switched to Walgreens because they are open 24/7. But what good is that if I can't even fill my meds there. For this doctors visit alone I've been to pharmacy's in Walgreens, Publix, and Kroger with plans of going to CVS whenever I can get another ride. Mika charges at least $15 or more per trip to take me on my errands. Being on a fixed income, extra running around costs me a lot. This is one of the unfortunate issues that I face as a disabled American. I pray for safe access so I don't have to run around so much for "controlled substances".

I feel paranoid about how they act when I bring in what they consider "controlled substances". I am considering my insurance's mail order program. I'm Considering going postal and just having them mail me my prescriptions because I'm tired of rejection or prejudice. I'm tired of the pharmacist tech asking me for my identification prior to telling me my meds aren't available. It's like a set-up. That makes me more paranoid; the unknown on what could possibly be on the computer screen in front of them. Sometimes it seems like they don't tell me my prescriptions aren't available until after they look at my ID. I feel like I'm on a " controlled substance" list. I have chronic pain, mood swings, insomnia, and massive head pain. And I have an incurable disease. I would like nothing more than to control the substances that I medicate with, but I can't unless I choose not to medicate with pharmsudicals and just suffer through my symptoms instead, which I mostly do. Georgia is where I was born and raised, but Georgia needs to be compassionate and allow patients to have safe access and to support homegrown. No patient should have to go to that many pharmacy's and still not have everything prescribed. Just venting. With a headache.

Friday, June 19, 2015

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.

Thursday, June 18, 2015

Video Blog June 18, 2015

So on my last video blog, it was apparent that I had some serious neck problems.  Granted, I'm a computer and cell phone head, but I had problems long before technology became what it is today.  I mean, just look here  https://youtu.be/3QzCKReW0Iw



and you'll see me whipping my head back and forth like Willow.  I feel tons better, and I just hope that things can continue with the good Dr. Sherra Conde.

Going to the doctor at a Spine Align Center of Atlanta under the care of Dr. Sherra Conde has been a blessing.  Her mission is in alignment with what I want, as shown here on the center's Instagram https://instagram.com/p/4COQJ1vJu3/?taken-by=spinealigncenter .  There are countless other testimonials from other patients like this one here https://instagram.com/p/3tofx1PJvz/?taken-by=spinealigncenter .  This is a state of the art facility and I'm just glad to be a patient there.  I'm raising funds so that I can continue treatment at the

 

SpineAlignCenter™  

Atlanta's premier state of the art health facility that specializes in specific scientific chiropractic care that is gentle, safe and highly effective www.spinealigncenter.com. I honestly feel that with continued treatment, I can have a lot of the damage my body has gone through reverse, which means healing can begin.

I've had my digital x-ray already taken.  From what the doctor say, my spinal cord had about 60 years of damage done...and I'm only 42!   She took her time to explain how my x-ray told her about my body and some of it's ailments.  She assessed the problem and she immediately began adjustments and manipulation on my body.    That was the next thing. 

Torque Release Technique or (TRT) is a highly developed system of neurological analysis that allows our practice members to receive the most specific form of chiropractic care possible.  This advance technique has a proven system to get you quicker results than most conventional method of chiropractic care.  This pinnacle chiropractic technique requires the doctor is skillfully trained with special certifications.  The instrument associated with the TRT technique is called the integrator.  This instrument was engineered to deliver the least amount of force possible, allowing the practice member to finally receive a chiropractic adjustment without the fear of twisting and turning their necks, or hearing the normal clicking sounds associated with a conventional adjustment.  If Dr. Conde finds that a practice member would benefit from a different type of adjustment, then a specific, scientific adjustment is often a light pressure from the chiropractor utilizing the hands  to move a vertebrae back into place. This happens with a quick movement and is often without discomfort. Dr. Conde's adjustments are safe and gentle enough for the spine of a newborn baby to the spine of 100 year.  

Finally she sent me to the exercise room to begin my therapeutic exercise. By immediately spending time on her special exercise machines, my spine is able to continue to adjustment process.  And though the adjustments do make me sore afterwards, I can already see a difference, as shown in my video.   

Hopefully soon i'll be able to show my x-rays here and discuss exactly what's going on.  Be sure to Support MS Awareness and help me out a little bit, that would be appreciated if you can.  The link is here http://supportmsawareness.blogspot.com/p/donate.html 

Name your poison and Sneak Peek of Video 2

Risperdal, Zanex, Norco, Temazepam, Mirtazapine, and Amitripyline. Name your poison, those are mine. Throw in a possibility of Gabapentin and Tudorza Pressair (fancy, right???) and we've pretty much darn near got the contents of my bag down to a T.

I take these poisoned prescribed pharmsudicals that are prescribed to me every day in order to feel some level of normal and to treat my symptoms that are caused by having my disabilities, not by preference. I still do not understand how something toxic is supposed to help, but I pray.



While cleaning out my medicine bag, I saw some meds that were expired.  At first thought, I was going to flush them but then I thought about the toxins in the pills going into the tap (tainted and polluted) water and making people and animals sickER.  So then I thought to crush them into powder and set them on fire, but then I thought a out air pollution with toxic gas.  I couldn't bury it because then I'd put toxins in the soil. I was about to go on a whirlwind in my mind but finally my husband looked up how to discard expired prescription meds and it said there is a service that comes by to pick them up    http://www.disposemymeds.org/  .  How do I know that they are not just recycling old pills back to patients and that's why they don't always work.  I don't know.  I'm paranoid about what goes into pills and such as opposed to what is naturally grown or provided by mother nature. Anything that's not natural is un-natural.   That's common sense even to someone like me with cognitive issues. 

As of right now I'm down to 5-7 pill prescriptions in my everyday carry bag, (1 of which I take daily if I have to be around other people) and 4 of which I take most days and nights ( 1 of which is to allow my mind to stop raving long enough to go to sleep).  With the physical part of the disability so eratic, the emotional and mental can take its toll on anyone, especially the MS patient like me.  There's no wonder why I'm seeing a chiropractor with all the medications I have in my bag...that bag is heavy and my spine is  curved all kind of ways.  I have scoliosis and also bone spurs.  Getting these things spine adjustments can help in making my MS better and give me almost 14 more years of life..and those visits will cost me upwards of  $2500 with insurance .  But they work!  https://youtu.be/3QzCKReW0Iw  I'm hoping to be able to get the treatments I need that are not involving pills.  I've got to raise some money so that the little treatments I can do without pharmaceuticals.  That's all I want; to live a life without pharmaceuticals and pain and everything else 

I long for a place where there is safe access to what GOD intended for us, natural herbs and plants galore.  And though I'm not there yet, I also give thanks that I'm able to homeschool my princess
Please donate to my Write 4 MS Awareness Fundraiser in the donate tab :) 

Tuesday, June 16, 2015

Video blog June 16, 2015

You'd never believe just how fast MS symptoms come about. They sneak up on you and POW...they attack.

Today is Tuesday. Yesterday was my 2nd born's 18th birthday. My golden boy..he was a premie and I never let him forget about it. He is also the biggest one in our tribe's children. So far.
  I've got a lot of stress going on at the moment. Looks like we are for sure making moves for a better life, and I'm thankful for that. I'm at a level 8 in pain at the moment but I'm happy to be home with my family. GOD will see me through this torment.
  The pain is actually excruciating. I hate taking Norco, but I went ahead and took one. Well..half of one because it makes me nauseated.
  One cool thing going on is that I'm seeing a chiropractor. It's important that I begin to take control over what I can change. I don't know about a cure for MS, but I do know that my back pain is horrible and I'd like a non surgical remedy. I'm hoping to barter her services with those of Attica Lundy presents On The RISE Magazine and Radio. If she can correct my spinal damage, I'd give her the world, or at least tell the world about her. Dr. Conde...she's A1.
  Well, I'm laying down praying this pain goes away. Please don't forget to donate if you will (click on the donate tab)

https://youtu.be/i6Bteilg3CI

Tuesday, June 9, 2015

Re-homing Furbabies

I need to place my dogs somewhere and since they are not puppies, it's a bit harder, I think. Is there an organization that could maybe help me? Or will anyone here adopt them possibly? It's a Boston terrier and a chihuahua . They are some sweethearts but being disabled isn't making me the best pet owner...I'd like them to have a new loving home in a pet-friendly enviornment if possible.

Crisis


I got a repost by Dr. Sherra Conde, a celebrity doctor in Atlanta, Ga. that did a spine adjustment on me yesterday in Atlanta.  My ex-rays were pretty bad and I wasn't too happy about the diagnosis.  She explained a lot, took extra time to teach...and I am certain GOD sent her to me  by way of my husband who signed me up for a free adjustment.  I'm thankful and blessed and will tell the world how she helped me.  


Here's the repost

#Repost @dr.sherra.conde
・・・
So many people share the same story and same struggle and frustration sweet@deartrapmary Here's her testimony "Makes no sense. I wasn't born this way and I don't know how I got here, nobody can tell me how it happened, nobody knows too much about it, there were/are very little preventative measures, I cant afford the treatments that work to keep me healthy and comfortable, the pain alternative is illegal so I am prescribed prescription pills and there is no cure. Support MS Awareness. Please write letters to your government officials to#legalize medical #cannabis and and allow qualified patients access to grow their own because thats mire affordable and please support my @AtticaLundyCooper 's #Write4MSAwareness@OnTheRiseMag Fundraiser by #repost, by word of mouth and doing your own research, by donating anything (even change) via paypal to DearTrapMary@gmail.com or on the http://supportmsawareness.blogspot.com, and by praying for a cure for me. Ugh...I hate pills. : ( " #naturalhealing#healthiswealth #healthgodsway#knowledgeispower #spinealigncenter
#chiropractic
Thanks, 
DearTrapMary aka The Boss Lady@AtticaLundy Cooper
(#RepostWhiz app)




I've got to make a move out of here.  Keep me in your prayers.  

Tuesday, June 2, 2015

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.