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Everyone knows that anytime I go into a relapse, my caretaker is right by my side when I'm going through anything rough with Multiple Sclerosis. Rafael (my husband)  is the best caretaker I've ever had and is always dependable.  It came to me recently that when going for places for assistance, it looks bad that he's not working.  I have to remind people that his wife is disabled and therefore sometimes he can't work.  Stereotypes are bad and it's sad that people may look at him like he's lazy when in fact he works overtime as my support system.  People say to me, you don't know how lucky you are that your husband is with you all the time by choice.  I have to remind them that choice or not, when you have a disabled person you must care for, it's not about choices.  It's for survival. I appreciate it.  I just wish people wouldn't assume he's lazy when he's not "employed".  Sometimes Caretakers are paid, and i'm looking into that because in all honesty, he has a job taking care of me.

Caretakers are some of the most looked over people in the world, but here is the job duties of a MS caretaker.

A caretaker should help the care recipient:

• Make and keep all doctors’ appointments for check-ups and injections. Finding and sticking to a treatment plan helps the patient reduce the frequency and severity of MS relapse.
• Research treatment options and the risks of each treatment. Each medicine comes with its own side effects and concerns. Other health issues may complicate these potential problems. Discuss all concerns with the patient’s doctors.
• Handle health insurance forms and financial concerns. Financial planning for both your health expenses and your personal expenses is an important part of disease care. Patients and caregivers may see an impact in wages as a result of the time needed for disease care. You may wish to meet with a financial counselor who has experience in healthcare expenses.
• Refill and pick up prescription medicines.
• Make the home MS-friendly. It may be necessary to renovate your home (or the care recipient’s home if you do not live together) in order to make it more accessible and comfortable for the person with MS.

If anyone thinks these are easy tasks, think again.  Not only do they do those duties, but they also assist as needed with bathing, feeding, and more. I'm thankful to have him taking care of me. He needs help sometimes but we have found it hard to get the help we need, aside of God's grace. We are quite thankful for that, indeed.

Independence Day

I saw the fireworks.  I haven't seen fireworks in so long, never really getting out and definitely not feeling Independent.  I was amazed.  While most American's celebrate the 4th of July as being the United States of America, and no longer part of the British Empire, I spent my 4th of July becoming Independent of unsafe access.  I am now safe access accessible.


Where I'm from (Atlanta, Georgia), there are very strict laws against cannabis and everything else.  It's sad.  Hemp, which was once mandatory for people to grow had become illegal and most of the states in the USA and is highly illegal where I come from.  For having one ounce of marijuana in Georgia, you risk being charged and convicted of a Felony Crime.  For a patient who has Multiple Sclerosis among other diagnosis, safe access is a must because cannabis works.

The reason why everyone doesn't know how effective cannabis is medicinally is because there are not enough people willing to disclose information about a crime that they are committing.  If it weren't criminal, then people would feel more apt to tell their amazing healing stories. It's sad, really, to make not decriminalize something that works and claim that the reason is not enough evidence when you know that evidence leads to prosecution.   But for those of us who have  safe access to the variety of strands that work for them, the effectiveness is amazing and astonishing.

The fact remains that it's not harmful to your health.  In fact, it's helpful for your health.  One of the things I've noticed is that cannabis helps with psychological issues and personality disorders, which is a great issue in society at large.  It also helps patients that experience chronic nausea, lack of appetite, seizures, tremors, chronic pain, have cancer, and more.  So why is it so tabboo?  I think it's because people can actually be calm and able to heal themselves, and the government wants nothing to do with that.  Growing industrialized hemp could even change the air we breath into healthier air.  It helps with air quality like other plants and herbs do.  It's not "dope" in the sense that it's drugs.  Cannabis is a natural plant that grows from GOD's creation.  In Denver, where I am right now, even recreational cannabis is legal and people seem to be a lot happier. This is pretty neat, and non risky.

I feel as though I have finally experienced my independence just by being in a place that has more freedom.  I'm taking Multiple Sclerosis by the bullhorns and dragging it the way I want it to be, which is going in the direction of healing. We've touched base with a new friends along the way and are going to learn as much as we can about this old phenomena of the healing benefits of all organic diets, absolutely no gmo's, absolute peace, gardening and farming, non evasive or pill/syrup based medications, use of herbs and plants such as rosmary, sage, lemon balm, cannabis, ie organic healing treatments, and more of what GOD intended.  I honestly believe and know without a shadow of a doubt that if you just let go and let GOD, he will do it for you. I'm now in an area where I can do that and not be charged for it and treated badly. At least one level of my anxiety has begun to let up.

I met a miracle woman.  She's a kindred spirit and a familiar one.  Anyway...Spirit is moving rapidly and I'm putting my faith in my community to help me out with my #Write4MSAwareness Funding project.  My husband and I have been accepted into her organic living and healing house where MS patients are welcomed and cared for as well as cancer patients.  It costs to be in this house, and I need assistance, but not one person has donated to it.  That is depressing in itself, but yet I'm out here sharing my experience so that someone else, if not me, can be helped.  I will find a cure.  I may need help from time to time because I am a disabled WORLD citizen and this world isn't easy to go up against all alone.

I knew Atlanta, GA wasn't going to be a place of healing for me.  I knew that the only job prospects for my husband would be in Colorado, and right now I'm not getting any financial assistance for my daughter from her biological father who is also out of work. In Atlanta there is too much stress like the fact that my landlord, Bless Her, made me go in half on pest control instead of just paying for it and also wouldn't fix plumbing issues I reported in January 2015, making me have to walk further to wash dishes and risk (which I did) breaking dishes and getting cut or dropping items because it's too heavy or having to take extra trips to and from the kitchen to the nearest sink.  My house was killing me because the stress of it is too much.  It takes a whole team of people not to make me freak out at life, and they do so it's a very enviornment wherever we are as long as we are not under attack.  And that house was attacking us and eating us alive.  I've never been able to use the blow dryer or hot curls in my bathroom or....any bathroom, as the outlets don't even work but yet in still...we don't complain.  We have never been able to use the tub in the downstairs restroom and yet we don't complain.  And I had to leave stuff in the house because I'm on a fixed budget and moving takes time and money and it has to be done slowly but she wouldn't give us one day.  Everyone said this and that but we just left like she asked us to.  I have it in writing.  She goes weeks not calling us back to follow up on things and yet she can't wait a few weeks to hear from my family because i'm too stressed to deal with things and these are my things.  42 years in Atlanta and this lady won't let me get my things.  I've only been late on my rent three times in three years but hey, business is business and at the end of the day a disabled world citizen isn't worth a hill of beans to most.

So I left.
I didn't leave for good,
My teenagers are away for the summer with their fathers and my oldest stayed behind with his fiance who's expecting my first granddaughter.  We've got a girlfriend and her little princess who are in Atlanta, too.  Life is so fresh and crisp right now, and this is the time to have the right to have a healthier and happier way of life.  I pray this summer proves to be a new beginning.  I'm here in Colorado to establish ourselves and to begin healing from everything. Everyone comes to Colorado for different reasons but I'm here to work with this woman and to learn what she has to teach us, and to grow into something even more beautiful than before. I hope other's share this journey with us....and that they have their own true Independence Day ...some day.
#write4msawareness

Imaginary Preggers

First of all let me say that I'm  not pregnant nor am I imagining that I am. But sometimes I appear as if I am. I am one of the people who suffer from constipation and irritable bowel syndrome. I also retain a lot of gas, and that is painful. I know it has something to do with diet, but its also a side effect of the medications I take. It's a coincidence that my back pain makes me hold my stance like a pregnant woman would. Now, some days my belly is regular size and I look "Beyonce Fine" (I've got these amazing birthing hips) and you'd never know that I'd been any way else. It's a struggle.

" Because multiple sclerosis interrupts or slows the transmission of signals to and from the brain, the electrical impulses to the muscles that are involved in emptying your bowel can become disrupted." Says Web MD ( http://www.m.webmd.com/multiple-sclerosis/guide/bowel-problem-linked )

The painful reality is that sometimes the constipation is so severe that my stomach cramps, twists, and turns #CharlieHorseStyle. But lately, I've also had bouts of diarrhea. I've also been suffering from loose bowels. Pretty much all if these ailments happen I'm addition to each other. Currently I'm hoping to not get hemorrhoids from too much wiping with toilet tissue (I'm out if wipes...I know, tmi).

I don't like looking pregnant and the back pain is something I could really do without. I understand how necessary it is to have a proper diet. I've come to know a woman named Frankie who will be instrumental in teaching me about proper nutrition for my Tribe. She even knows about healthy foods for dogs. I love her spirit and I feel like she's really on to something huge. It's gonna cost to eat right, I know... But I really want to be healthy and happy. Health is wealth.

I also know my spine alignment has something to do with it. My Chiopractor, Dr. Sherra Conde, treats these symptoms via alignments and though the treatments are costly, they have great results. Im going to raise enough money to get her treatments. My insurance does not cover it. Diet, exercise, and holistic treatments are the direction I want to go in with my health. I want to decrease medications and go a more holistic route. It's my right.

So though I'm not preggers, I'm imaginary preggers. If you see my with a swollen belly, its because I have Multiple Sclerosis and somethings not quite right on my insides. It's okay. Yes, its painful but also yes, I'm making it. I won't give up on myself. Today will be the day I take a stand against MS The Monster and begin to take my life back minus all the MS crap. That's my pledge.

I write for Multiple Sclerosis awareness, a cause that's so close to home its scary.

#write4msawareness
 

Emotional Support

I'm fragile at best. Not being able to bare children anymore, my dogs are my babies. For now. Seems lately i've been struggling so much with being able to care for them since I don't have a vehicle anymore. My emotional support dogs Koche (my 6yr old chihuahua) and Spanky (my 8yr old Boston Terrier) are my road dogs. They love me and I love them.

I support my family and my dogs are family. The cost of pets can be costly, but at least pets appreciate what you do for them. They don't complain much. They show true loyalty. They invest a lot of time being true friends to their families. They are sensitive to harshness, but respond well to kindness. A dog is said to be man's best friend...so I more than feel thankful for having two.

Today has been stressful. Packing and unpacking and repacking. Spanky and Koche are trying not to be too anxious. They have brand new matching crates and are active again with leashes. Fresh grooming,too. It's hard sometimes, but they are my emotional support.

Making new moves. Can't understand why government won't allow more testing on alternative means of MS treatments other than pills and elixirs prescriptions. Id wven be willing to try acupunture, hydro therapy, any anything else that isn't made in a lab of some sort.  The main reason they don't have enough data on medications is because laws prevent people from opening up and sharing info or people can't afford them due to insurance not covering fees. I hope to change that. I hope to keep shouting from the rooftops about MS. This is my body and I should have the right to do to it what I wish as long as its not hurting others. My GOD given rights are being denied and so I suffer more. My quality of life has been compromised for too long.

I pray MS gets more treatments that work and that nobody will have to suffer like me. I pray for the best and hope to continue to write 4 Multiple Sclerosis aka MS.

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.

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.