Thankful

I got my act together. I took an one hour shower, and treated myself to a shampoo and conditioner treatment for my hair. I can't believe how long my hair is. I truly love my natural hair.

I spent Thanksgiving with a new friend.  She's a nice woman and I feel comfortable with her.  She knows a lot about Colorado and I think it will be nice possibly exploring things with her. I've asked her to join me in May for the #45DayRawFoodDietChallenge , so we'll see if she does. 

For dinner, she made my mom's broccoli casserole for me. I really appreciated that, and it was delicious. I MIGHT try to cook next year if I'm able to concentrate long enough to do so. 

My knees are hurting, as are my shoulders, back, fingers, and feet. I've only had seldom headaches, and I'm thankful for that. I ran out of a few meds, so I'm wondering if that has anything to do with that. I'll see my neurologist soon and i'll discuss it with him. Other than that, I've been doing better in my opinion. Even after a recent panic attack (which I will blog about on a different post), I've been relatively good. Pain won't kill me.

More nerve pain - Trigeminal Neuralgia

My gums made me want to physically pull every tooth I have in my mouth to avoid anymore pain, especially the bottom row. But...this is not a dental issue. It's a nerve issue stemming from my right temple to my lower right jaw throughout my gums. I feel like it's killing me. I've had Bursts of tears so forceful that I feared my head would explode. Loud sobbing and even near screaming. It's horrible. For hours my gums hurt, it hurts and I keep putting ambesol in my mouth, I brush my teeth with a soft brush with organic toothpaste, I take Tylenol, and a heating pad. I even more weed. I'm feel like I'm about to pull my hair out...but I won't because All of this is very temporary.

Trigeminal neuralgia is a kind of nerve pain which can give stabbing or burning sensations down the side of the face, usually on one side only. The pain may only last a few seconds or minutes but may repeat many times during an attack. For some people the face pain is present all the time. Trigeminal neuralgia can be excruciatingly painful.

Trigeminal neuralgia is more common in multiple sclerosis than in the general population and can be confused with dental pain. If you are experiencing these symptoms, you should be assessed to see if it is a symptom of your MS especially before you consider any major dental work. The dentist says it may be MS related.

The pain can be triggered by every day activities such as eating, shaving, talking or by being out in even a light breeze. Noticing any triggers can help you manage the pain by avoiding them where possible. Treatment is usually with a drug called carbamazepine to begin with. If drug treatments are not working, surgery may be an option.

I'm going to call my Dr and/or nurse this morning to see what can be done about this. I'm going to specifically ask about carbamazepine because this is no way to live and I've got to be here. I want to be here. I'm fighting to live. Please support MS awareness.

The story behind my left knee

There's a spot on my skin right above my right knee that itches and burns so bad that I want to dig into my skin. No matter how much I scratch it, or put cool rags on it or whatever I can think to sooth it,  it still continues to itch. But there's nothing there. Doctors cannot find anything wring with it. Well... technically there are nerves there. I have a disease of the central nervous system so anything goes, right?
  It's common for people with MS to experience strange sensations (also known as dysesthesias). Itching is one potential sensory disturbance of MS. It's different from allergic itching because it's not accompanied by a rash or skin irritation. If itching is mild, no treatment is necessary. It also hurts,
  Mine is more than mild, but I choose not to medicate with pharmacy meds for this. I just try not to scratch as much (i rub instead). And I make sure the area is clean, and I pray alot. I have a plan.
  Medical marijuana has been shown to ease the symptoms for those who suffer with neuropathic pain.  Neuropathic pain is a specific type of pain that has usually resulted from irritation or damage to a nerve. Some of these strains are Chem Dawg, Super Silver Haze, Super Silver Sour Diesel Haze,  and AK47 (there are others as well).
  See, things can be treated naturally if you have the money to be able to either grow it or purchase it. It's one's choice on how they choose to medicate. We don't always have to go with what a doctor prescribes if something natural and organic can do the same justice. I live in a state where I can grow six plants or more so I'd like to grow one of these strains if possible. I've tried some of these strains and they do help.

https://mymsaa.org/ms-information/symptoms/pain/

Back against the wall

Honestly, my back feels all sorts of broken. I'm in pain and I hate it. I can't sit straight because my back hurts. I can't sit crooked either without pain. I really can't get comfortable.

I'm smoking Tangerine Kush. I got it from Lotus Medical and was told it's very strong. See, it's known to relieve pain and allow for relaxation.

I'm in the process of renewing my "red card". It's actually purple, which makes the color a returning favorite of mine. I used to love the color purple which is why in 1983 I discovered Alice Walker's THE COLOR PURPLE.   I was in the 5th grade. That book shocked me, much like this back pain is now. Everything is like this pain because I don't know what it feels like not to have it.

I'm laying on my side now. I tried laying on my back, but it's too sore.  I feel like this is skeletal pain. I don't want to take pain meds for it so that cannabis is helping. I also got bath bombs (I hope they work). I think without cannabis, I'd lose it. I'd surely have to take opiates which I do not want to do again. I'm going from lots of medications to none and I want to keep it that way. Cannabis allows me to relax so that the pain is tolerable at least.

I hope nobody else gets MS.

I feel trapped inside this pain. I'm panicked like my back is against the wall and if I don't improve I will deteriorate. I need to take yoga, at least, but I'm so sore. Regular exercise like sit ups and push-ups are unbearable. I'm stuck.

I'm not the only one. I've got a friend whose back pain is so severe that she is in tears. I wish I could cry about my pain but crying would probably hurt. My body hurts like I've been struck by a moving vehicle. My mind is all over the place. Guess I'll smoke. 

Completely Tired

I spent the greater part of the day trying to get some things accomplished. One of the things that I wanted to do was to put some shows together, and though I was able to schedule the shows on the proper dates and even book talent for three segments,  I was not able to go any further. This is actually quite common and that's one of the obstacles that I face on a daily basis. Just trying to get activities completed is a struggle.  I found that because I'm having such a difficult time completing things, if I start them advance time even if I only get some of it done, I will have enough time to ask for help some.

Im exhausted.  I dont really get good enough rest, not because I don't have the opportunity,  but it's mostly because my mind races all of the time with new ideas or new worries all at the same time. It's so exhausting. I Don't Want To Miss A Moment Of Life and taking a nap to me WILL take me out of the game; at least for that time too.

It's funny, but before I even began the Cannabis treatment I had a fog about me. It's quite frustrating to get stuck in a thought process and just not be able to get the idea or even the right words out. I might not be able to figure out what I was just thinking about or even what I'm  supposed to be thinking about or where I was going with an idea.  Being confused a lot is very frustrating throughout the day because it allows others to have control over me, and depending on how confused i am, paranoia makes me have to second-guess a lot of stuff because it just doesn't seem make sense. The cognitive issues has really put a damper on a lot of things I find myself not wanting to take a lot of the challenges just to not become overwhelmed. 

As we continue to work on the On The Rise projects , I do have more hope. I want to continue to get the word out about people with MS and I want people to continue to understand that multiple sclerosis affects so many people in so many different ways, but we still matter whether we are fully competent or whether we are fully handicapped.   These are my thoughts for the day. I'm tired and hoping I can bring some money in. I want to go to massage therapy at least six times next month.

Please support MS Awareness.

Pain From Too Much Stress

It's 4:15am/mtn. Two baclofen 's and an elavil later, I'm still awake. Pain is letting up, though; slightly. The artist Bankroll Fresh got killed and there is a lot going on with my kids and stress is there.

Despite that, my team is really supporting MS Awareness. They tell me to take it easy and I'm learning to let them do more as I direct. I'm really stoked about Too Smoov signing on and it feels good to be able to get more exposure for more people and multiple sclerosis. 

Gigi is back. I can't believe how much I can't do anymore so I'm always thankful to and for her. This once brilliant mind is full of "I don't know how"'s now but that's fine too. I think God prepared me because he gave me a huge network and is restoring my team and so there is no such thing as "I don't know" or "I can't do". The Boss Lady in me is in control of everything. My dear Ifeelya told me to pace myself and get rest. So I am.

Hubby's still doesn't have all of his paperwork needed to file taxes. That is stressing me out more than anyone can imagine. It's not fair, but then again we all know life isn't fair bit that patience is a virtue. We are virtue qualified times a billion, I think.

It's 4:26 am/mtn now. Off to sleep I go. Can't wait to get Too Smoov's bio completed.

Bumps along the way

I hit my head on the edge of a glass shelf and instead of me being able to calm down about that like I would have hoped, there's this elevated discussion on why I'm not sitting down in the first place, why I felt the need to get up in the first place, why I'm getting anxiety about this, that, and the other....meanwhile my frustration is coming in because I'm dizzy from the head bump and i'm trying to diagnose myself.  All this going on at once, within minutes.

Who wouldn't have anxiety, right?  But I'm not having anxiety.  I'm having frustration.  

I'm always grasping for moments.  

Welcome to my life, and my bumps along the way.  

I feel like a 3 year old who can't decide if she wants to get up or not and do things.  I specifically will tell anyone, I do things when I feel like doing them.  This time I felt the need to do something but for whatever reason instead of being able to heal from my bump, I have to deal with other stuff on top of my bump.  #icant #whocould #sooththebump 

When little kids hurt themselves, some adults begin to scream at them, making the situation worst.  Yes, they are supposed to stay out of harms way, but my thing is things happen.... Heal, don't add on to the pain.  I"m not a little kid, but the same applies to me, the MS patient who gets off balance and tumbles over or falls down or gets bruises and bumps.  And I get it.  I soooo get it.  I'm sitting here dizzy and thankful that I'm having a MRI in three days.  

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.

 

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
 

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.

What hurts the soul

I'm on edge. I've taken and witnessed too many losses this month alone all on top of each other...I'm trying to feel safe from unexpected stuff, because Lord knows my shock meter is on high. 

People promise they will always be there, but death cannot be avoided. But then, neither can life once activated. And in life we make choices.

Forgiveness is essential,  and even in my most anxious moments I have grasped wisdom. God's eternal love endures, as always .. To some, I don't even know what to say, having become speechless....to the English language at least.

I'm trying to get through so many things all at once. And my thoughts won't escape me because I'm in too much physical pain to even begin to clear my mind. Or my heart. I want to get this out, what hurts the soul.

"Dear mom,
  I may not  have always liked you but I loved you, and I never would have left you. You may not have not  always liked me, but even though you loved me, you left. One time voluntarily and once when God called you home. I probably won't get over my abandonment issues until we meet again.
Attica"

 

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

HOPE WHISPERS

When the World says give up

HOPE WHISPERS

try it one more time.

I put up with a lot of stuff.  Sometimes life can seem so hard.  I remember telling myself sometimes, "It'll be okay once I lay down in my grave; it won't hurt so bad then".  Then I have to remind myself that I've gone through my savings and I need to rebuild my wealth so that my family, at least, can put me to rest properly.  And so I remain.

There are a lot of times when I just want to walk away from it all. My life before MS was free and full and fun.  It was filled with endless opportunities and endless thrills.  But there has to be a reason behind this madness called MS.  I know that there is some way of getting rid of it, and I hope I do before I die because I do want a better quality of life again.  I want to feel whole again. I want to do things and not be afraid. I want my life back.

Hope whispers to me.  It makes me have faith in there here and now, and the future.  Hope makes me feel like things will get better.  So many families out there are suffering, but they pull through and stick together.  I do thank GOD for the fact that my family is still in tact.  Whenever I feel like just giving up, I think about all I gave up in the first place just to be here with them, and then I get over whatever feelings I was going through that would ever make me think an "exit" will make things right.  I'm not perfect, but I do have heart.  and as long as it's beating, I'll do my all in everything.  HOPE whispers "one more time", and so I pull up a chair and stay awhile.

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

Quit Picking At ME!

It's funny.  My husband and children say I'm cranky.

Who wouldn't be if something was constantly eating away at your brain and your body was on a level ten pain?  But I try to grin and beat it.  It's not always easy, either.

I've been practicing YOGA.  I know I'm not doing all I can do for my MS, but I'm so paranoid about the medications they have out there, the most I can do is take Zanex when it gets too bad, partake in my "peace sessions", and take Lortab for the extreme pain...and that's not even working anymore.

I've been bruising badly.  Auntie Jackie (who I call Momma Jackie) says it's because I take asprin and also because I might be anemic.  I'll go see next week.  And I GUESS i'll go to my PCP, thought I'm not too fond of her yet.  It takes time to get to know a doctor and to feel comfortable with.

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

In complete pain and feeling sorry for myself

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

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

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

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

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

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

Motivation

I need to blog.  I need to tell my story.  I'm trying hard not to dwell on my condition and just merge it into who I AM.  I'll do better but for now I've taken my nightly meds : Zanex, Lortab, and a sleeping aid.  My body is feeling like pins and needles all over and I need to rest.  Most days are good but lately I've been in a relapse that is very painful.



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