Pages

Monday, July 27, 2015

Say No More, a MS tale of suicide

The coroner ruled it a overdose; "all her oxys were gone and a bunch of her morphines. They're going to try to find her son tonight. They have to seal her room." It had been a stressful life for her and she never felt like she was worth anything to anyone. She was angry and volatile, sad and lonely, and all negative energy was being pushed aside like she was. Her depression was spinning downward and she was feeling destructive towards herself and MS did a number on her and suicide was the end result. I wonder how many other times she'd comtiplated ending it all. She said she had an ex wife that she hated and a son who didn't care about her and that nobody felt she was worth anything. Those are things she said often.

"Just wanted to say goodbye to everyone I love and I don't have the time to call you all but you know who you are I'm sorry but I just can't do this shit no more love you" is what she posted on Facebook four days ago, and she was alive yesterday. Barely. No more. Finding her lifeless body was surreal. I tried my best to remain calm...stress is not good, nor did it make sense. She was gone. I will never forget her, though. When they took her away, there was question on how to notify anyone... Her son didn't even know because nobody knows her family. We only know she had a son and a father.  The lonely and painful life of a MS patient without anyone is tragic. All those pills prescribed to the average MS patient are a suicide waiting to happen because with that many pills for a patient, its not safe. Half the time a MS patient feels better off dead due to alllllll the complications. I wish she could have been stronger until help got here.  "V" indicated that her passing shows us that MS patients in the healing house will need to check in with someone at least twice a day just to make sure and must have emergency contact just in case . "V" says a lot of stuff and I've yet to see her in action face to face, but honestly not many people check on MS patients, so I doubt that'll happen.

"Most studies have documented a higher suicide rate in MSers compared to the general population, and suicide was associated with several risk factors: Depression severity, social isolation, younger age, progressive disease subtype, lower income, earlier disease course, higher levels of physical disability, and not driving.

CONCLUSIONS: Clinicians should be aware of the fact that suicidality may occur with higher frequency in MSers, the available data suggest that the risk of self-harm is higher than expected in MS patients."

I hope she's free. Its so hard to be in the world alone, and this So much has happened since I got here, and I know I'm here for all the MSers, so I need funding. We need funding so that we can have the resources to save lives. I don't want to know  that another MS patient committed suicide. Awareness saves lives.

http://consultqd.clevelandclinic.org/2015/04/suicidal-thoughts-not-uncommon-in-ms-epilepsy-patients/

"Patients with epilepsy and multiple sclerosis (MS) show high rates of depression and an increased risk for suicide. They also are more likely to think about death and self-harm than are individuals with other chronic illnesses, such as arthritis or cancer, according to a study of suicidal ideation conducted by Cleveland Clinic.

" An individual’s coping capacity is influenced by constitutional variables and resources.  The subjective thoughts, feelings, and beliefs of demoralized individuals are that they have failed to meet expectations; their own and/or other’s expectations.  They feel overmastered.  There is a feeling of being unable to cope with some pressing problem.  There are simultaneous feelings of being powerless to change a situation or to extricate themselves from a predicament.  There is a sense of isolation; a feeling of being unique and, therefore, not understood.  A common subjective experience may be characterized as follows: “I feel awful.  No one else understands it.  I’m not going to burden anybody else with how I feel.  Therefore, I’m the only one who feels like this.”  We all have coping strategies that we use to deal with what life throws our way.  And, we all have a point beyond which we no longer can cope on our own and become demoralized. " That's depressing.

http://myelitis.org/newsletters/v8n1/newsletter8-1-02.htm#.VbaRxiPnbqC

Major depressive disorder (MDD) affects 20 to 50 percent of patients with epilepsy, MS, Parkinson disease or dementia. Depression adds to their disease burden, and suicide contributes substantially to excess mortality in this population."

With statistics like that, I'm glad I am using alternative methods for my medical needs. Despair is not an option. I'm 23 days off pills and I'm still fighting for a cure. Maybe even more so now.

May she rest in peace.

Tuesday, July 21, 2015

Eat Me

17 days and no meds. Im stoked! And now i'm going for more! New diet!!!!

In August i'm going to go to mostly raw fruits and vegetables. Last time I did that, I had cravings for junk food really bad when I stopped. I think training my body on not eating wrecklessly can improve my health, too. More raw, less mess. No gluton. No saturated fats. No dairy. No salt. No transfat. No sugar. These are definite no-no's when it comes to eating healthy with Multiple Sclerosis.

I know im "sick" but not too sick to try something new. I know as a woman with MS I am at higher risk of heart attack, stroke, heart failure, and atrial fibrillation (or flutter) than those without MS. I've had heart fluttering for some years now but never knew it was MS Related. Also saturated fats come primarily from animal-based food, which I never knew. Fatty red meat is now off the menu. I pray for good. No more foods with palm and coconut oils, either. Saturated fats are known to raise your LDL, or bad, cholesterol. High cholesterol can lead to heart disease.

I'm adding Avacado to my #1 food to keep. On The Rise Magazine's Xtra Angel just did a piece about it explains all of its nutritional benefits here http://ontherisemagazine.com/why-you-should-add-an-avocado-to-your-diet/ .

I've been getting away from dairy. Some specific proteins in cow’s milk could be detrimental to people with MS. There are better ways to get nutrients.
Too much sugar leads to excessive weight gain. Excess weight also increases fatigue, which common among people with MS.

Off the list are  commercially baked cookies, crackers, pies, and any other packaged products whose ingredients list includes trans fats. Keywords to look for on nutrition labels are partially hydrogenated oils or shortening. We know that trans fats increase inflammation inside blood vessels and thus could lead to cardiovascular problems.

The more salt in MS patients have in their diet, the more likely they are to relapse and have a greater risk of developing new lesions.  Excess salt can increase your blood pressure, another path to heart disease.

White rice, white bread, and white pasta are in the off list, too. These processed carbohydrates, which elevate blood sugar, also appear to hurt the heart, especially in women.  “When you’re trying to deal with MS, you don’t want to have to deal with other diseases like heart disease and diabetes as well,” Jamieson-Petonic says."

Gluten intolerance in MS patients are prevalent. Gluten is a protein found in wheat, barley, and rye. Only the 1 to 2 percent of the population that has celiac disease, an intolerance to gluten, must go gluten-free. Many people without actual celiac disease, however, find they feel better overall when they eliminate gluten from their diet, so I'm removing it from mine.

Sacrifice is key, and I'm willing to stop the madness if it gives me more life. Day 17...goals.

Sweet Sixteen

Sweet sixteen. In the mist of insanity of the day, I made peace. Today has been so stressful but I know everything is alright. That's the energy. I'm still toxin free.

I had to explain love and light today. The ministry continues and we continue to preach love and light. It's really simple... I can't have a lot of escalated conversation or I risk relapse. That's how we live. So when the day got hectic and emotional and things were frantic, we were able to help someone by telling them how we live (peaceful) and how we won't live (in chaos or fret). Initially we got push back, but then love shined through.

Still, my headache worstened...but the treatments help and I feel like there is hope for more releaf soon. Due to the escalations earlier, I feel slight tremors in my mouth and more fatigue. I'm ignoring it, though. I know that emotional situations occur and its my gift to get through them peacefully.

Oftentimes in emergency situations or frantic ones, people end up fighting each other instead of listening to each other. People misintrepret what others say to them and oftentimes misunderstandings occur. For whatever reason, people are sensitive and will think someone is attacking them when they are not, causing the situation to esculate. This is chaos.  When people have the kind of personality that folds under pressure, its hard to get through urgent situations peacefully. Those people are dangerous for me during those times, and I try my best not to be around them or I teach them how to be around me.

And yet I rise.

Being the target of anyone's frustration is dangerous for me, but I find that the combination of Phoenix Tears and Tincture from teacher keeps my body at an even relaxed internal enviornment for the most part. That is amazing, and I'm so thankful because I still have not been able to fill my meds. This is the longest time I've gone without it in a while. I'm "aware" and consciousness is amazing. I really can't wait to get more into yoga and meditation because I feel better. I'm not frantic or panicky (as much).

My social anxiety is better. Yes, I'm still anxious to talk to other people but not to a point where I'm extremely sick. I'm scared that I will still have a fluke episode and have a seizure or bad relapse but fear is the enemy and I'm dismissing those ideas. I'm trying to shut down many things that will overwhelm me, and believe me that is hard. But I'm making it one step at a time.

Monday, July 20, 2015

Look Me Up

I used to have the motto "I will sleep when I'm dead" and was a member of the #nosleepcrew. I was approaching Fourty and for the life of me, I couldn't slow down. And then I relapsed, and while in relapse had my identity stolen, a partner desert me, had hardly anyone check on me and my kids, and it was bad. It was crazy and I had no help.

When I came close out of the relapse, my place was a shambles and there was a pest infestation in the building I was in and I just wanted out because management wouldn't move me or resolve the problem. Because I wouldn't pay the rent,  I had to go to eviction court and because I could not speak for myself due to nervous feelings, I got evicted. I didn't have it in me to fight, so  I began to find my way back into the world. I had a lot of Fatigue, but I pushed through. I was on about twenty active meds at the time, and was scaling them down slowly but surely. Pills kill. That was in 2011. My, how time flies.

"My best advice for anyone that doesn't understand MS is to load them up with books, watch "When I Walk" available on Netflix, or have them attend an MS dinner with a good program.... Youtube has some very good videos as well.  If they are unwilling to learn more, ask why"  posted someone in one of the MS support groups I'm in. People truly don't get it yet, and I hope they will soon. I go through so much and yet I'm still here, just fighting for a chance. I'm blogging while laying on my back and before I laid to the side then before that I propped myself on my elbows. I can't sit up very long without hurting and I have to move around and pretty much lay in all kinds of positions to find comfort. It's exhausting..really everything hurts but I'm treating for the pain. I'm learning to grow my own medications and this means I will live longer. I don't want what happened to me before to happen again ever. I'm safe now, but I don't want to be sick any longer. I'm fighting for a cure.

Please take the time out to research Multiple Sclerosis. I say look me up, but what I want you to do is research this disease that I have. I share my story so that it's told, and also to help others. I am writing 4 MS awareness. There's no cure but I'm fighting to live and hopefully by spreading awareness I can help save others from what I've experienced. My advice to anyone with MS is to build their support team so that they can take care of their family and take care of their health. I'm fighting so hard and I'm tired...and I choose to sleep now because Fatigue is kicking my but, but I'm not dead.

Being in the plains near the mountains, I'm  in fresh air and sun. The sun is hot for me since Colorado sits high and is closer to the sun. I can't perform in the heat but when it cools down I go outdoors. I do yard work and climb stairs and walk dogs everyday, so I'm getting plenty of exercise (and soreness). By nightfall I'm tired already and with my treatment I'm able to fall asleep with no problem. Day 15 with no Temazepam... And for an insomniac like me its amazing.

Our teacher had me watch Super Soul Sundays and it really hit me back on my path. Rafael is ensuring that I get better and this is the first time I've been supportive of a MS treatment...most times non of the pills actually work and do more harm than good.

In July 2015 I'm still dealing with identify theft issues, but I'm also pill free. Now I have to find the treatments for some of the other symptoms. I'm trying to document more so that we have records. So much of my life has disappeared from my memory so I want to capture the rest of it by writing so a cure can be found. If I can help other MS patients live a drug Free existence, I will.

Cannabis is not a drug. It's a plant. And GOD gave it to us. It's our right and our hope for today.

 

Sunday, July 19, 2015

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.

Saturday, July 18, 2015

Day 14

I walked in mountains. It was my first mountain in Colorado, in the same week that my life took a hit personally. It was like being pushed from a mountain, honestly, and I fight very hard everyday to maintain my composure. But I cry myself to sleep and pray a seizure doesn't decide to pop up on me. Relationships are scary for a patient who has Multiple Sclerosis. Relationships are scary for me.

This is the 14th day I've been without meds. I found out today that my doctor mailed me my prescriptions, and now I can  call my insurance company and get on the ball for a vacation override so that I can fill my prescriptions here. It's not safe to be completely out of meditation regardless of how organic you are going and to be a person with a chronic illness in another state without emergency meds is not a good thing.

I'm super sensitive now. Could be 14 days off of meds gives withdrawal symptoms? I know Xanex is a real buttkicker and so that buffer is gone. All buffers from meds are gone. How does that affect the central nervous system? Does that make me super sensitive or is that my nature? I'm putting an analysis on it all.

I'm thankful even so...14 days is an accomplishment. Reminds me of once upon a time before MS. Those were the days!

Me vs the sun

It's 9:22am. It's too hot to go out. I'm disappointed. I knew I would be. The sun makes it impossible to get anything done until its cooler. Heat or high humidity can make many people with multiple sclerosis (MS) experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently. Most people with MS avoid hot baths, hot showers, and heated swimming pools.

Some of the things I do require assistance. Most things, actually. Motivation is needed. This is depressing because in my heart I want to do so much. I suppose it's fair that I have to wait on others since so often they have to wait for me, but this is truly handicapping. The Aviary is really too heavy for me to complete alone, so when its too hot we can't do anything.

Last year I never got things done. Housework was impossible because nobody wanted to help me and I have issues lifting,pulling, bending,pushing,etc. This year I have to do better about making better choices for myself, and to get the help I need. It worries me when I can't get help. Oftentimes money is the obstacle. Or willingness.

Fighting depression is a task for anyone. I'd feel so much better if my daughter was near me. Today will be a better day...just gotta be patient.

The bigger picture

I'm pushing myself so hard out here in Colorado. It's amazing to see myself do things I never thought I'd be able to do. I'm exhausted, though. With every little feat, I'm perspiring and light headed. But I've got my eye on the prize.

I suffer from MS Fatigue, and that's why I'm exhausted. "Web MD" does a decent job in describing MS Fatigue, something that so many of the MS patients I know suffer from, including our roommate Des, another MS Patient.

"Multiple Sclerosis and Fatigue

Medically speaking, fatigue is not the same thing as tiredness. Tiredness happens to everyone -- it is an expected feeling after certain activities or at the end of the day. Usually you know why you are tired and a good night's sleep solves the problem.

Fatigue is a daily lack of energy; unusual or excessive whole-body tiredness not relieved bysleep. It can be acute (lasting a month or less) or chronic (lasting from one to six months or longer). Fatigue can prevent a person from functioning normally and affects a person's quality of life.

According to the National Multiple SclerosisSociety, 80% of people with MS have fatigue. MS-related fatigue tends to get worse as the day goes on, is often aggravated by heat and humidity, and comes on more easily and suddenly than normal fatigue."

7:33 am and I'm waiting on Rafael so I can start my day. Honestly all I want to do is lay down, but if I did it would mean admitted defeat, and I can't lose. Putting up this Aviary means that when something crosses out path, we are up for the challenge. It symbolizes getting better and stronger. I need this just as much as the birds do.

Being a part of a cause bigger than yourself inspires you to do more. It's imperative that my team helps me win, because I'm going to help them win. These birds deserve a better life and our teacher deserves happiness (she does so much to help others).

As I rise, my hope is that my day goes well and that I'm able to do my part without obstacles getting in my way. After this task is complete I hope to complete the new MS program I'm working on. This Colorado air will do MS patients good. I see the bigger picture.

Friday, July 17, 2015

Day 13

Today we put in hours in building the Aviary for the birds. This is the first time Rafael and I have ever put up one of these, let alone built one from scratch, but we have a great teacher.

This is day 13.
What's going on is:
I had crying outbursts PRIVATELY ( i'm super sensitive).
My body aches everywhere.
I have a headache that keeps hurting.
I'm fatigued.
I'm experiencing bladder and bowel issues.
My arms hurt (oh yeah, that's a part of my body)
Slight random slurring of speech

What's not going on is:
I'm not "startled"
No spasicity
No tremors
No seizures
No paranoia
No potty accidents

Day 13 has been a long day. Aside of building the Aviary, the emotional issues I'm having are a distraction to say the least. I'm thankful that I'm getting so much support, though. Still no word from Dr. Stappenbeck's office. I can't imagine why since I've reported I'm out of my meds ( just in case I relapse). On the up side, Keisha and Angel have been on the forefront of my Write 4 MS Awareness project and our teacher is molding us in ways we never imagined. I'm missing my daughter and all my children.

I hope to start doing videos and interviews on M S soon. There are so many aspects of MS that I want to share with the world. I'm hoping to make this invisible disease visable.

Another day blessed to be here.

Thursday, July 16, 2015

Day 12

Still no meds. I called Dr. Stappenbeck to ask for a prescriptions, but I'm not getting word back on if I'm getting the prescriptions or not. Meanwhile, I'm still trying to get through the loss of a close relationship and running out of meds is not wise. I took a leap of faith in coming out here to try alternative treatments, but never expected to not have access to prescriptions if needed.

The problem with America is that it's all about the money. For me to even have to leave Georgia for safe alternatives was and is ridiculous. I will be going back soon but still, I should be able to be free to have access treatment anywhere I go. It's up to me and people like me to continue to vote for our GOD given rights.

Today Rafael and I put up a bird Aviary outside. Barbed wire, steel poles...its going to be beautiful. Healing House teacher says its good for us to finish projects together so that I can learn with support. I find that it works both ways, the support. I'm learning some things and am seeing how I could do things better. Being out here allows me a lot of time for reflection. It's good for the soul.

I miss my daughter terribly. I'm doing this for her so I can have energy to do things with her.

Wednesday, July 15, 2015

Day 11

Incredible. I lost a great love yesterday. It was taken away, actually. I think it was love. Whatever it was, it hurts. I'm so thankful that everything wasn't taken away. It's day eleven, and I thought surely I would not make it today. But I did. I'm stronger even in my weakest moments.

So stress escalates MS relapse occurrences. Today I've tried to zone out as much as possible. I watched TV. I played with the animals. I had to get refills of my treatment and I'm cutting back on doses so that I will be able to afford this. 4cc of Phoenix Tears and 12oz of tincture hopefully will last me for two weeks. The amount of pills I normally take to control my symptoms. I'm now more active than ever before. Mind over matter, this gives me life.

There is one other MS patient here. Rafael has been helping her as well. Being an experienced caretaker came in handy. I'm thankful to be helping other MS patients.

I'm tired. I'm happy but sad. I hope my sadness doesn't make me have a relapse. I'm trying to remain strong.

Tuesday, July 14, 2015

Day 10

My head hurts and I've had a long day. A piece of me left today, but I know that I will have new beginnings. It's hard dealing with disabled patients. I'm doing that already, having survived day 10 with still no xanex, hydrocodone, Temazepam, Mirtazapine, Amitriptyline, BC Powder, or Risperdal. Nice little cocktail, huh? That's not including the other headache meds my insurance won't cover. This, however, is the beginning of the struggle. My supply is nearly gone.

With treatments being costly, I am thankful for the opportunity to do something greater. I've worked hard to get to this point. I want to make sure I can continue getting stronger and better (and wiser).

Last night I got terribly upset from stress and I suffered a night time fright (night terror). I had to end up sleeping with the light on. I know I'm safe, but sometimes night frights can't be helped. As a patient with not only MS but also PTSD and a few other disorders, I'm thankful that my husband/caretaker is standing by me and not giving up on the dream. I find comfort in that. I took some phonix tears and tincture and soon found myself asleep in a safe zone.

My treatments are now at three times a day. Smoothies have been introduced into our diet, and we are loving the fruit we're drinking. Organic is the way to go.

I hope to be cured of MS one day. I hope to live a "normal" life. Spirit has shown me the path in which to go and faith will see us there. Falling asleep now, I dream of those better days and am ever so thankful for this chance at life.

Monday, July 13, 2015

Day 9







Day 9 and no pharmacy meds. I'm staying focused and trying to have no distractions.
Yesterday for the first time in my life, I went mountain climbing at the Mountains Of The GODs. Just eleven years ago I couldn't even walk! I've got so much to be grateful and thankful for. Choosing to get and remain healthy is the best thing I can do for my family; my Tribe. My health is our wealth. All of ours, really.
Day 9 didn't come easy. Every single day is a challenge. Every day I have an instant of panic but instead of going for the pills I just relax and let the new treatment have time to work. And it's working. The hardest part is being strong enough to say no to stress from loved ones. But I'm focused and committed to life.
I still experience slight MS issues; not being able to walk straight, nausea, intense head pain, attention/concentration issues, motor skills issues, giving out of breath easily, problems going up and down stairs, spasticity, and cognitive issues. My pain has decreased, and my mental issues have lessened (panic, depression,etc is getting better as well as PTSD). I'm still in a controlled environment (stress causes the majority of the problems MS patients have ), but one that is precisely for MS patients and fostor animals...no room for distractions. Unfortunately we can't care for everyone but we are doing the best we can. From the Holy House to The Healing House. Spirit is with us.
The treatment I'm taking is not acceptable everywhere. We are still in an era where there is doubt and opposition. There is still so little known about it due to strict laws making it hard for people to open up about it and share information. However there is a plethoria of information surfacing on the internet, even in this blog. So many stereotypes crush down the hope for true healthy living, but truths like mine and the many patients with safe access can crush those steriotypes. My healing is coming from GOD, and I will continue to tell my story so that others are helped.
This is not free. Next month it will cost a little over $1250 to be here and that does not cover diet or treatments. In my heart I know I can't go back to my old treatments. I wasnt living a quality life at all. My treatments, my enviornment, and other things were slowly killing me. Most doctors will agree that pharmsudicals don't care about healing; they care about money. There is no money in cures but there is in disease. I hope people do care to help me fund finding a cure for my disease. I'm 9 days on no meds but if I have to leave here I won't have access to it. I just want a chance.
So 9 days...this will be the 9th of cannabis. Tincture, lots of water, rest and relaxation, excercize, mostly organic non gmo diet, beautiful nature, and Phoenix tears have helped me drastically.  You dont have to only smoke to get the benefits from cannabis, and I'm proving that. There are other options. I'm not "high" all day and my body benefits to the point I can be off pills. This is amazing. For this, I'm filled with hope and gratitude.
The symptoms i'm experiencing at this moment are that I have a neck cramp in the base of my skull, a headache, and bowel/bladder/digestive issues. Last night I had muscle spasms. We are determining how the treatments help and which treatments help what symptoms.  Charting/blogging everything helps us to know if we are on the right track. If im cured, everyone will. Everyones MS is different but i'm looking for the cure for us all. Cancer patients are even being helped with this treatment as well as traumatic brain injury, diabetes, and more.
I thank everyone for their prayers and ask that everyone supports my efforts in my Write 4 MS Awareness funding project. As I write my story I will also write yours :). Any financial assistance would be be beneficial. Please spread the word.

Saturday, July 11, 2015

Setting New Boundaries

  I wasn't going to post this but it's important that I tell my MS story completely so that I can continue to help others..

God help me but too many times, I've been down. What I can't do is needy relationships; i'm disabled and I qualify as  "needy", if anything. Needy relationships; They are exhausting and cause me to be on medications; most times because of the anxiety it causes. I'm not doing that again.

Needy relationships cause me anxiety and panic. Headaches also occur. See, stress is a huge factor in a MS patient's health. Stress can lead to seizures, organ failure, symptoms, or more. So the stress of stress freaks me out. The stress of a needy relationship can effect other relationships around me,too. And it simply isn't good for "we".

  I get that we all long to be loved, supported, understood and accepted. But honestly you can do these things without a lot of physical attention. If your relationship does not allow for a lot of physical ( disabled people, military, prisoners, etc), then you'll have to deal
with someone who can handle being without you. Also I'm afraid of germs, or anything remotely contagious, so.the first sign of cooties has me running away fast.  I'm a MS Patient among other things so I require a lot of solitude, which only includes the company of my caretaker husband. " We" have MS.  I shouldnt have to keep explaining it so I say it once and thats that. I hate that some people dont value the other aspects of friendship outside of the "me me me" viewpoint. For other relationships, Talking means a lot. Eating meals together is great. Having fun together or sharing in an activity together screams attention and affection. It's when those things are overlooked or underappreciated and they are just not good enough that " needy" comes to mind.

I found this to be true: There are three basic relationship type people—secure, anxious and avoidant. Secure people are warm and loving and most likely were raised by a consistently caring and responsive caregiver. Avoidant people , whom psychologists also call "dismissive," try to minimize closeness and often were raised in an atmosphere where neediness and insecurity weren't tolerated (my environment).

Anxious people are the ones who typically are seen as needy. They worry about whether their partner loves them, and they most likely had parents who were inconsistently nurturing. They often are emotionally overwhelmed Or they might ignore, deny or minimize their needs, and then look to others to fill their emotional void in manipulative or indirect ways. The bible speaks of not being anxious. Wow. Look at GOD.

Eventually, as I knew it would, I've become emotionally overdrawn with the neediness of relationships. As a MS Patient, I'm super scared that they will once again send me to meds. I'm not sure of what to do other than avoid them at all costs. But when you love someone enough, you can try to help them know how to love you. MS doesn't mean we can't be loved, it just means love can't be the stressor.

I found this online: Needy people often accomplish the thing they fear most—they push their friend or partner away. "The anxious person can wear out their partner," says Farmington Hills, Mich., psychologist Carolyn Daitch, author of "Anxious in Love."

People can learn to calm their anxious, needy responses. And their loved ones can learn to understand and set boundaries.

And really that is all you can do. If people can't respect my boundaries then I have to.

In the new healing house, there is no room for needy relationships. I'm gonna send out memo's too. Needy need not apply.

Friday, July 10, 2015

Views

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.

Thursday, July 9, 2015

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

Friday, July 3, 2015

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
 

Wednesday, July 1, 2015

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.