Insurance covers Big Pharma trails

Ever heard of a paper trail? Well Big Pharma trails are sort of like that. The medicine we are prescribed not only is listed at the pharmacy we go to but also leaves a trail in our bodies along with the possible side effects. I appreciate Big Pharma for how it's helped me, I just wish I could get the same results via natural herbs and holistic health care (alternative health care).

Alternative health care is not covered by my insurance as far as I know which is unfortunate because I chose that to be my primary form of treatment. A lot of my  medical health care is covered by Medicare and Medicaid and I appreciate that but the only solutions that I mostly get are pharmacudical ones which is no longer working for me since I'm really tired of the pills.

Holistic health care helps speed up the body's ability to recover quickly without the negative side effects. There us a vast difference in treatment and healing. Herbal and holistic alternatives promote a healthier lifestyle.

Some of my approaches have been to drink plenty of water, I walk more, and I get more rest/sleep. I place myself in a stress reduced environment. I eat healthier.  I take physical therapy and mental health therapy.  I take cannabis and physical therapy for pain treatment. I drink herbal tea for cold/flu. 

Beyond that there are other therapies that I'm not yet able to afford. For instance, massage therapy or Reiki would be helpful. Assistance from an herbalist and/or a naturopath would be helpful. Salt therapy is helpful. Essential oils assist greatly. I would greatly benefit from chiropractic and colon hydrotherapy as well as acupuncture and sound/vibration therapy, too.

I've come a long way from before when I was given opiates for pain treatment. My decision to refuse certain pain treatment options has greatly improved my life. However I still hurt, just not as much. Now I want to tackle the mental health pharmacudical options prescribed to me by replacing them with more natural and holistic methods. I understand that mental health is very important. I understand that the pills prescribed to me are meant to treat my ailments to the extent that I can exist in humanity as "normal" as possible. At the same time, I know that the pills are hurting me with their side effects and I'm not okay with that. I am learning tools in mental health therapy that are changing the way I approach my mental health issues and in time I hope to be off all pharmacy meds.

 

Where I've Been

 I go to a trauma group on Thursdays <rolls eyes> so that's where I am, I have 28 weeks of it.  I'm a therapist that strongly believes in therapy and a lot of stuff has my mental off center so I'm getting the assistance that I need.  This assists with <sigh> panic anxiety disorder, social anxiety disorder, ptsd, depression, bipolar disorder, paranoia, and disassociation disorder. I have multiple sclerosis and sometimes because things are not in balance, it's gets like that.  And I live in America where PTSD is very common.  So my breakdowns are not just my breakdowns, but also the breakdowns of our environment.  We are the world. Anyway, I'm sorry I have not been vocal with most of you...but I will begin to contribute more to the mag and the radio soon---i'm just not supposed to while in therapy, is all.  I roll my eyes and sigh because GOD knows I love On The Rise and I hate not working.  I hate when things are stagnant because of what we stand for.  And yet between MS, PTSD, and this other crap I'm fighting to put the pieces back together.  Mental illness is nothing to be ashamed of, and it's nothing to be embarrassed to say I had a nervous breakdown and am working hard to get back to a more functioning Boss Lady Attica Lundy Cooper.  I've got a lot on my plate, honestly, and still manic as ever. And on top of that my feet are tingling and so are my hands. My legs tingle and so do my arms. My headache has started coming back. Anyway, I have to get on a plane this weekend twice so keep me in your prayers and my destination is a secret because of my paranoia BUT I am okay and hubby's looking after me and so is my medical team.

Finding myself

The whole thing about my account was a false alarm, but it showed me just how panicky I am. Not to be able to trust anyone is very hard; to be in the world in a sensitive mental state is scary.  Depression, anxiety, ptsd, trauma from it all, just everything is quite overwhelming, and I want to be "normal" again.

I remember years ago when I checked myself into an anger management program. I had to learn how to deal with my anger issues without resulting to violence.  It was hard not to just knock the heck out of someone if they rubbed me wrong, or to stop imagining doing something harmful to them; so I took the program and to this day it still works for me.  Because I know therapy works, I don't feel so helpless; so I went to a new program for victims of trauma.

I appreciate my medical team for assisting me in getting set up with this new program.  I am a complete advocate for therapy if it's to help someone.  As I stated in the video, it's a commitment but I committed to getting better for myself and for my family.  I was surprised at how many of us (in the group) were struggling financially because where we live it's expensive (but we are here primarily because our health care is very good).  It was scary being around other's as afraid as I was, but the life coach in me was able to come and give some of the women the feeling that they were not alone.  I was quite surprised, but being around a circle of women (it's female only with the exception of my dog #kochecooper ) did not freak me out.  The best part is that I felt safe and hubby was there to meet me when I got out.  That's still my one steady stability as far as my world goes at the moment.  I was afraid that hearing other women's stories would trigger something in me, but we didn't get deep into issues and so it was a really safe zone.  Day 1 of getting better, and of finding myself. 

And I didn't even cry today.

While I'm Away

So pretty much my life is in full panic mode.  I can bare a smile for my children but for the rest of the world, I stay unseen.  PTSD is horrible horrible horrible. I'm going to have to go to a trauma group (20 sessions) and hopefully I can escape this nightmare I'm in.  And now I'm on new meds AGAIN and still can't see the specialist i need to see.  And to think...I was doing so well.

I really trust nobody.  I can't help it.  The world lies to me, corners me, and is never there for me.  I want my kids in therapy but nobody listens to me.  I'm barely writing this because I want everyone to know that PTSD on top of MS pretty much has me in the worst depression ever in life.  As if that could ever happen, right? They're worried about me.  I am too.

Friggin' Nervous Breakdown.

I find moments when I can completely calm down with the help of medication to have a very simple but important conversation, then i'm back off into my world because I can't be in everyone else's world.  I only pull myself together for the important stuff then I crumble again, sometimes during. It's really hard. I'm trying to stay to myself so I won't have triggers. And I often fear someone will put me in a hospital but my doctor told me today that I'm just traumatised and nobody would do that to me for that; it's not my fault. I'm always feeling set-up, though.  Weird to explain.  I'm stuck in this place in this time with my mind and so hopefully these meds and therapy will help me out of this hell.

I love my new room.  I haven't decorated yet but I love it.  The person I wanted to help me decorate ...well, i'll have to do it by myself and i'm fine with white walls for now.  I'm too short to climb up on things and my equilibrium is a bit off so I can't stand of anything anyway.  People don't understand that.

Doc is proud of me for gaming again  I can't stay awake that long to play but I try to get in at least three days a week. I really don't want to do it but it's a part of the therapy.  I really don't want to do anything other than sleep.  And I did 8 pushups which was amazing.  Now i'm hurting but that's normal.

It's a severe weather alert going on which means I get to sleep incredibly.  I pray these new meds are not going to harm me.  I plan on using my dehydrator tomorrow to see what it can do since I have some left over veggies from my smoothies.  I've lost all kind of weight so today I forced myself to eat something other than drinking a smoothie.  I hate eating.  I hope I get out of all of this nonsense, really.  

Letting Go Of Triggers Begins On The Inside

Just took a blood pressure pill; first one i've ever had in my entire life. PTSD is a horrible thing. I'm glad it's getting treated properly. Today was stressful trying to communicate with family in Atlanta, so I decided to go get the meds from the pharmacy that i've been avoiding because nothing is worth a stroke. I have to be treated apparently for my temperament because I have the inability to "turn down" on a situation and it could end up stroking me out. Anywhoo.... Anyone that knows me knows I hate pills so of course I poured half of it out before i took it. I admit it. Anyway Pills can be the cause all kinda DEATH of organs and of life and definitely quality of life (sometimes), so i'm really cautious. And yes lots of people take meds but I'm one that does not want to take meds; I just wanna live in peace and continue to heal, ya know. I thank GOD for my husband, my children, my grandchild, my dog, my granddog and his new family (hey P & E).

On a more personal note, my 4 year wedding anniversary allowed me to let bygones be bygones when it comes to past relationships and situations. As I said, I have serious issues and I am admitting that PTSD is no joke, and I will surely get to a point where I raise more awareness about it, too, for sure because think about it...soldiers come back with this so you can imagine the type of wars civilians like myself have gone through to get to this point. And yet I rise up every day the lord gives me a notion to and I live; maybe not on the standards most of society but in a way where I see my husband everyday, I have a loving and friendly (when not under fire) relationship with my children who are close and my inner circle and the world via On The Rise Magazine and On The Rise Radio. I have a voice. So with anything in my rear view, I'm wishing them well from the other side and I'm keeping it moving. Never fight and push for anything that compromises your health and your sanity, welcome deliverance, and live and love only in the light. That goes for everyone.

Distress Under Fire

I get overwhelmed very easily.   Once I'm in a frantic state of thinking, it's best for me just to walk away from whatever situation if it all I can when I feel like I can't get out of the situation. I understand that I just drift off into my mind into my mood space, into solitude I can prevent the worst from happening.  

This is typical, but I hate that it affects me so much. I’m trying to spread awareness, but when it happens to me it’s really hard for those around me to relate to the information provided:

Recognition and testing

Early recognition, assessment and treatment are important because cognitive changes — along with fatigue — can significantly affect a person’s quality of life and are the primary cause of early departure from the workforce. The first signs of cognitive dysfunction may be subtle — noticed first by the person with MS or by a family member or colleague.

• Difficulty finding the right words
• Trouble remembering what to do on the job or during daily routines at home
• Difficulty making decisions or showing poor judgment
• Difficulty keeping up with tasks or conversations

Talk to your physician if you are concerned about cognitive dysfunction. A specially trained health professional (neuropsychologist, speech/ language pathologist or occupational therapist) will administer a battery of tests and careful evaluation in order to determine the cause(s) of changes (since cognitive function can also be affected by aging or medications, as well as depression, anxiety, stress and fatigue). (info from http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Cognitive-Changes

)

On this 9th day of my #45DayRawFoodDietChallenge, part of the difficulty for me has been remembering how to get the meals together. It’s easy, right?  No cooking involved?  WRONG.  IT’S VERY DIFFICULT AND CONFUSING FOR ANYONE, but for a MS patient it feels like the worst thing in the world. This “fog” makes me just not be able to do things, like even providing meals. I can just stick something in my mouth but for other people to depend on me, this is really difficult.  I can’t decide on things which means planning which means I can’t do it.  I can do it, but it’s taking me forever in between just having to zone out.  I want to succeed in this challenge and in life, it’s just that having people to depend on me is hard.  I’m not always reliable and that hurts.  It hurts to not possibly complete a task due to the stress of having to interact with others in order to do something. What have I signed up for?

"Not as sharp as you used to be? You’re not alone. An estimated 60% of people with MS experience some sort of cognitive dysfunction in their lifetime. It might become harder to remember things, to concentrate or to plan and organize. And just like physical symptoms in MS, no two people experience these cognitive dysfunctions the same way" http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Documents/Momentum_Memory-Loss.pdf

Well, see the issue is not being alone isn't helping my situation. How can I live in this world as an active member of society and in my family not being able to remember things, concentrate or plan and organize? OH, THE DISABILITY INCOME. Ha! That's a joke in itself. I don't want to hear "You're not trying hard enough" or "Oh, it's always something". If I had no legs and couldn't cross the street would it be "Oh, it's always something" or "You're not trying hard enough"? NO! It's because i have an invisible disability and because people can't see it, they assume I shouldn't be frustrated about it or not be frustrated at them for not acknowledging that's what's going on and to cut me slack and not make me feel like crap for not being able to do stuff out of whatever reason my mind won't focus on it. Day 10 should have come with all the answers, that's for sure, and it would have made my life so much easier.
Signed,
I'm hungry, tired, and scared but keeping on this challenge if I can.
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Stupid Mindracing

Since I quit Gabapentin, I'm feeling still uneasy.  I'm more snappy with people...I really can't help it AND I'm having issues remembering people.  Initially I will pretend to know them so that it's not so awkward but I continuously look for little hints that will reveal who they are to me.  It can be embarrassing.  This is why I prefer for my team to handle it.

Once again we have a stalker.  No...not me and my husband, but one of my team mates.  This is so bothersome, that we have to get restraining orders. The entertainment industry is so filled with people who are violent and it really makes no sense.  We are filled up with words that we are offended by.  I'm doing my best to continue to keep up this blog, but it's really hard sometimes to read my own posts down the road because of all that I go through.

Mind racing is understandable.  Depression is understandable because I miss my family and money is tight at the moment with work slowing down.  I really want to get some natural stuff instead of the pills she gave me if I can't have the regular anxiety meds but I don't have the funds for that either.

I've been taking low dosage of it for a couple of months off and on over the years, here only 100mg , but now I'm kinda stuck in a depression because i'm not medicated.  Not medicated as in this month I took care of all my bills up front so the rest is earn as we go, and things are slow.  I can handle being not medicated, but I can't handle me being snappy on everyone, impatient, aggravated, etc.  I try to hide but people need me, and I understand that. Really I just want to rest but I can't get money if I don't rest.  Any little thing can set me off, so i'm trying hard to hold onto sane.  My baby is going to her 8th grade prom and miscommunication with her other parent has gotten me in a mind race. I asked everyone to be patient with me while I get myself together and I'll handle things towards the end of the month and already one of them has sent me into a panic attack and one has my mind racing and one blatantly does what I ask them not to do and one is definitely insistent that I worry about their issues and not my own and this is not peace for me.  My saving grace has been my faith.  My faith and my hope that people will stop taking for grated that without peace, I get ill.  Ain't that something, smh.

I'm happy to concentrate on my ministry again.  I have my online prayer alter room open if anyone wants to pop in and feel the love.  Sometimes I do, and it reminds me who to pray for since my mind isn't the same as it once was anyway.  I do the best I can do, ya know...and I don't forget my faith.  

Meeting Dr. Sheldon

Today I met with Dr. Sheldon. She's a really nice lady. It was easy to talk to her even with the transcriber there and Mallory in the room and of course Koche Cooper, who went with me. So dr. Sheldon and I just really talked and she asked me what some of my symptoms are and what are some of the things that I go through, and again it was really easy to talk to her. But as I began to talk to her she began to tell me what instances my diagnosis’  came into play and that helped out a lot because I know doctors have told me in the past, but I forget why they told me those things.  I just kind of take it into my personality or into my identity and speaking with Dr. Sheldon I felt safe and I could really be myself and it felt good to be in that position.

It's hard for me to deal with different doctors. There's a none trust issue that really makes it hard for them to treat me the way that they would like to treat me. Above all else I believe that’s practicing medicine and I know that everything is pretty much experimental because people are all different. We're not all the same. Multiple Sclerosis to me is not the same Multiple Sclerosis as theirs but the thing is we have a lot of similarities. There's some things that the doctor told me that I'm just going to take my time to explore and I'll see her next month

I like Mallory a lot because I don't have another female in my life to take on the feminine things that I need the feminine energy that I need. Mallory can provide a little of that female energy. The doctor talked about my abandonment issues. I didn't tell her that. I didn't tell her a lot. I spoke with her honestly and in a pretty safe mood and I was happy. It's beautiful out here in Denver .I had a really rough night last night with communication and frustration but I woke up this morning happy to be alive and thankful and in a positive space, so I didn't go to dr. Sheldon in a frantic state of mind. I mean I was my normal nervous self but I had Koche Cooper with me and it was alright.

Everyone here respects the fact that I want to go a holistic natural organic route for my treatment,  but they are appreciative that I am willing to at least try their practice and to see if it'll work for me. I'm thankful that today I'm only suffering body pain maybe at a 5 or 6 (especially my arms down to the elbows but I'm alright I am very very much all right and I know that I'm worried about my children always, but I know that I'm trying to stay here with them a little bit longer a lot bit longer and to do that I need to have someone to talk to that can help me out of the emotional entrapments that I found myself into.

I am not the same Attica Lundy That I Used to be. I'm not even the same Attica Lundy Cooper that I was in the beginning. But I am the Attica Lundy Cooper that I am today and that's alright. I am going to try my best to get On The Rise Radio and On The Rise Magazine where they need to be because it's a company that's for our future of the world honestly and especially for my children because this from me and of  me  to them and to their kids and their kids. We have 5 beautiful children that we are very very much proud of and we want to do for them and we have a beautiful grandson that we simply adore and we can't wait until we're at a stable place with my health and our finances that we can all be back together again.

Keeping The Heat Down

I live in a complex world.  I deal with a lot of people who simply refuse to do the things they are supposed to do and it sends me into panic.  Whether it's my children, my spouse, my clients, my family...the world drives me into panic.  Sometimes I hate it here---in this world.

I envision a world where people collectively as a team get the job done.  I envision a world where people around me would be just as or more organic than I am.  I envision a world of peace.  But people get upset with me when I simply ask them to do their part or what they are supposed to do so that I can do what I'm supposed.

The Struggle

It frustrates me to no end how hard I struggle with life. The Struggle. Ugh. I'm strong, though, and finally free to explore my disease in a non toxic way to see what works and what doesn't work. Freedom is very important to me considering I'm trapped in this defected body with this horrid "invisible" disease.

First and foremost the gas I'm experiencing is like no other. To some it might seem minor, but its not. Nobody should suffer like this on a daily basis. It's not necessarily from gassy foods all the time, either. The most common causes include long-lasting constipation, severe diarrhea, stress, and ultimately a digestive system that is not working properly, nerve, and muscle damage. Yes...DAMAGE. This is typical for MS patients, which is annoying and...scary. I suffer from gas every single day of my life. I don't want to "take" anything for it, either. I want to know what's wrong with me so that I can treat it naturally, but all I know is that this is common with MS. This is so irritating.

Something else that's irritating is this restless leg syndrome. After treating with Thin Mint Cookies, Pre '98 Bubba Kush, and a Caviar mix AND tincture AND oil, not only am I experiencing that but I still have the headache I'd had for about five hours before I decided to lay down for the evening. This worries me. And I don't like stress.

I've been doing well up until now but my head is my main concern now. It feels tingly and out of sorts. My stress level has been through the roof. Plus not only did I misplace/lose our food stypen, but I also am nearly out of funds. Insurance doesn't cover cannibus treatments or organic foods, so that's an out of pocket expense that is now necessary.

People say "take Rebif again"or to get another injection med from my neurologist.  I found no improvement when I took injections for the three years I did take it. I read the side effects and I know it gave me irritated injection sites, severe nausea, shakes, chills, flu like symptoms... It's poison, what else would I expect?

I've been over-pill'd and injected by "medicines" that cause further damage. My community is, too, with Restoril (insomnia), Zanex (anxiety), and Norco (pain) and so many other meds for memory loss, fatigue, racing thoughts, heartburn, acid reflux, depression, tremors, seizures, incontinence, sexual dysfunction, blindness, etc. and now that I'm off meds, I see why: you have to be really bad off up at some point in a patients progression to the point where all those meds are necessary in order to have somewhat of a normal life. I don't think the government cares that these pills and injections are toxic. I suppose they say, " Let it kill them".  Pain is unbearable which is why so many of us give up the fight. I've been kicking my legs for about an hour at least every night and they are still restless even after that. This could drive someone madd.

I'm praying for all of my fellow MS'ers out there. Some are even homeless and some are all alone. I can help them if I can receive more funding.  They need to be in a peaceful environment like mine. Throughout everything, I have a caretaker that is dedicated, people in my life that support our caretaker/patient relationship, a MS Awareness household, and children that love me. Being in Colorado while my young remain in Georgia is hard, but I know that being a healthier me is better for them. Prayers for all of us is certain.

As long as I have MS, I will continue to spread awareness. There are too many unknown statistics, and too many unheard cries for help. The Phoenix Healing House is not doing the necessary research to find ways of treatment that are not harmful and more effective. Research takes time, but I am finding improvements with this MS patients health and will continue until a cure is found. Thanks for the prayers. Please donate at the donate tabs.

After Desiree

D's suicide post (  "Say No More: A MS Tale Of Suicide  http://supportmsawareness.blogspot.com/2015/07/say-no-more-ms-tale-of-suicide.html?m=1 ) got a huge response of condolences on facebook. When she was alive, she really didn't understand that no matter how little she had in terms of money or mobility or even mental stability or even moments without pain she had wealth in people that cared about her. Insecurity, padded with paranoia is hell on the spirit and torments the soul. In my faith, I believe that we all have contracts to fulfil here on earth, and I'd like to think that D, the MS patient, had fulfilled hers. I salute her for so many things on a spiritual level. I do.

It was at some point that she couldn't be convinced anymore that she was worth it, when pain got too severe, and when she was too aggressive and snappy to everyone for any little thing for anyone to sooth her. It wasn't nice.  But when moments were good and pain and fears took a side seat, we did have laughter when we she was in better moods. But the last time she got rude and pissed and depressed over her life and this bullshit disease called Multiple Sclerosis, she began to isolate herself as she always did (like most MS patients at some point). This was her end. And her beginning.

Not everyone is awakened to the spiritual aspects of life, but we are. Her transition from here opened up doors for others in ways one cannot imagine. I only knew her for the month of July truly, but I had been introduced to her on the phone prior on my interview for the healing house application. I came here for her so she wouldn't be the only MS patient and to get the house in order for future patients. It seems like Spirit and universe are working together because as a friend and writer, I'm here to tell her story.  I honor her and promise to give my all to the MS cause.

Now,  there is nothing cool suicide even though I understand transition. We used to watch TV and talk about MS stuff. We talked about suicide and i always told her it wasnt cool. She knew. She said our landlord had driven her nuts with being passive aggressive towards her and we would soon see that for ourselves. I dont really understand that but seemingly they have something not too good going on. Is it a scorned love affair? "D" said "hell no" when i asked about it. So did our landlord. Who knows? In the house, we are supposed to have a family theme, so nobody is Alone. Supposedly. But "D" was alone. I never saw our landlord really talk to her. Our landlord did indicate she was tired of Dealing with "D" and was going to send her a notice to vacate at the end of the month. That's scary for someone on limited income. But our landlord never thought her MS was that serious and I had to tell her it was.  Depression can be deadly, however, and sometimes no matter how many people surround you, feelings of loneliness and despair could kick in. I aim to push harder so people know suicide isn't worth it.

So here I am...living...here.  I've got so many reasons to just give up. I have no money. I feel like my ex gf/co-caretaker abandoned me without the curtacy of her/us getting therapy. My abandonment issues alone would cause me to sink lower into a pit of sadness. There is no cure for the diseases I have. I need assistance caring for myself and my children. My tax situation is messed up and the IRS is holding my funds. I don't have people who are willing to help me. My old best friend still isnt speaking to me due to my memory loss as far as I can tell. My pain level is always high. My energy is low. Nobody understands. There are many other things that depress me but regardless, I'm not giving up.

Life is a gift.  I'm a light, and I'm here on Earth to live, to grow, and to complete my work here. I am researching for a cure for MS and hopefully other illnesses. I'm excited because my elder (and spiritual mother from a previous lifetime) "V" is finally coming to stay with here so I can know for sure our bond if any. She and our landlord say I'm reunited with them from another lifetime and though I dont know how true that is, I do of course know I married my twin Flame and no matter how many "lives are involved", he's got me protected in this one and I am protecting him too. We are so far away from home and family. This is bigger that most people know. Everything is happening for a bigger purpose. The "Phoenix" is rising, true enough. I wish "D" were here to experience this, but she chose to leave and so that's that and I've got a feeling that was just the start. Life goes on one day to the next. It's a choice, after all. Life. Love. Choice. Life isnt all that bad. I will certainly be staying awhile.

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.

Typing with one hand and being super mommy

My left side is getting worst with my motor skills.  At this point it hurts to type with it.  I definitely need speech software but i'm afraid that if my speech slurs I won't be recognizable. These are today's stressors....well, some of them.

  I need people to know how to work with me.  From what I gather, it's best to let me talk and then for the person to do.  <sigh>...easier said than done. Its the "doing" that is becoming more and more challenging. The "doing" takes strength and eill power that I dont always have.

Having an invisible disease means you get invisible assistance, lol.  Meaning nobody is going to do for you what they believe you can do for yourself. It's hard to hear "You're just making it up in your head".  It would be different if I had a hired assistant that would just do these things for me because they were paid to do it. But sadly i'm one of the low income individuals that cannot affored hired help. And that's why I get sad.

I have had no sleep, really.  My body feels drained.  Nobody monitors my rest so I am trying to do so.  If I had a paid assistant they could monitor how much ( or how little ) I rest, especially sonce I have insomnia. My son takes meds every 4 hours and I'm the one to administer it to him.  He had surgery (a tonsillectomy) The other day, and so you can imagine his pain.  And because it's pain meds, I'm careful to be the only one giving it to him.  I'm his mother.  This is what mother's do.  My husband and girlfriend open the top of the child-proof bottles for me, but I do the rest.  That's a lot for me. And my son reminds me when I forget, especially when he's hurting again, so we are working together. I didn't realize how much pressure this is for me. My son helps me take care of him because thats how my children have always been since MS came into our lives, but with a little funding I could get someone to help me take care of me, too. http://www.gofundme.com/write-4msawareness

Despite the motor skills challenges, I carry on. I'm typing this with my right hand only when typing with the left hurts too much. I think once my stress goes, my motor skills will return.

Meds

I'm thinking about all the meds I've been on.  though i've been living with MS nearly prescription free, there are still some pills I could do without.  The Zanex and the Loratab for one.  I know I complain a lot, but I'm just trying to be more voiceful while I can.

These are loretabs and zanex. I'm prescribed each of them three times per day. Just with those two alone, what kind of quality of life us this?

I'm raising funding so I can have my life back.  I talk about this so you can see my pain.  I find that with the right diet, with massage therapy, with the right environment, and with natural and organic alternatives I CAN TAKE LESS MEDS AND GET BETTER.

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

What Does It Look Like

I hear a lot of MS patients saying that they are tired of hearing such phrases as “but you don’t look sick” or “just take a nap and you will feel better”?  I'm tired of it, too.  I am sick and taking a nap may or not make me feel better, but I will still have MS either way.  Even if I do take a nap, I'm going to wake up and be tired all over again.  It can be hard to find people to talk to that truly know how I am feeling and when they say “I get it”, to know that really do. 

But I am not alone. There are thousands of others who are feeling, struggling, warring with all the same things I am going through.  I'm just weirded out by this "invisible" disease.

I say "invisible" because for the life of me, I can't find an accurate picture of what MS looks like (aside from the MRI readings).  What does "I'm tired and do not feel like moving and have no motivation to even go downstairs" look like?  If it looks like lazy, then you're looking at it wrong because in my mind, I'm accomplishing all kinds of things. 

I've seen on a MS blog "Having an invisible chronic illness  can leave you feeling adrift in a turbulent sea of confusing emotions. Anger, sadness, fear, anxiety and hopelessness can all vie for a front row seat in your daily struggle to live a happy, productive life.".  I agree.  But at least writing about it begins to shed some light into my world.

I honestly think stress is what is causing me to not be able to fully snap back into "life" as I normally would. I have spurts of energy when I will walk from room to room in the house and be a part of things (I cooked grits and fist today), but hours later I will just want to relax.  It's good that my family is always nearby.  

In researching, I've found that exercise is helpful.  I used to walk a lot and have not been doing so.  It's good to have a walking buddy to ensure that you are safe and do not fall, if you are having symptoms.  Also, diet can make you feel better; vegetables, fruits, water, fish, nuts, etc.  

I'll need massage therapy.  With exercise, there is more pain.  But I know GOD willing, help will come soon. 

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

Brief Relief

I haven't posted lately.
 
It seems that with recent changes in my life came a bit of unforeseen drama to the twelfth hour. Its almost water under the bridge now, but the impact of stress in my life does a whopper on my system. I've been in a lot of pain, mainly from tension.

Also, my lack of reflexes on acknowledgement of "HOT" items such as the stove (ouch) and an iron ( yikes ) has lifted me from cooking and ironing. The wounds from the iron are healing, however my brain seems to think its more than a simple wound and has my entire left arm from fingertip to neck locking up, having spasms, sharp pains, knots, and more.

Thankfully the family has been helping me by giving me massages, but honestly my caretaker (hubby) is getting worn down. Its not easy keeping me comfortable. With him working full time now and having to see about me in his off hours and throughout the day (phone and text)...

We've been trying something new; there's a new family member that also acts as caretaker here things are working out well (extended family). We all take care of each other. that's the best thing about family. it took me awhile to trust her because my husband is all I knew in terms of someone that actually cares about me enough to put my health first, but she is wonderful. she helps prepare my meals is she really helps with the kids and we help with her child as well...it really is a really good family situation and I'm happy. 

I'm hoping to begin writing again I'm using a voice app that helps me relay my thoughts into text so that's good. https://dictation.io/ I've been writing this one since May 12th, 2014 so I guess is about time to go ahead and publish and then I'll try to be more forthcoming with my posts since I do have this voice app. I love all of you very much for tuning into my blog and for following my progress and hopefully we'll find a cure for MS one day soon. 

Peace

Please donate to my fundraiser.  Thanks!

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

Temper Surrender

I've become aware of the "temper" problem that I have.  Something comes over me...like a rage...and it's hard to "turn down".  It's sad, truly...when  I surrender to my temper.  GOD help those who are the subject of my wrath, especially if they are the direct cause.  I'm working on this because it's really a problem.

I'd love to blame this, too, on one of my ex's, but I can't, lol.  MS patients, unfortunately, suffer from emotional liability or mood swings.

Emotional lability

Emotional lability or “moodiness” may affect persons with MS and is manifest as rapid and generally unpredictable changes in emotions. Family members may complain about frequent bouts of anger or irritability. It is unclear if the emotional lability observed in MS stems from the distress related to the disease or if it is caused by some changes in the brain. Whatever the cause, emotional lability can be one of the most challenging aspects of MS from the standpoint of family life. Family counseling may be very important in dealing with emotional lability since mood swings are likely to affect everyone in the family. Severe mood swings respond well to low doses of the anticonvulsant medication valproic acid (Depakote®).

So what's the solution?  My doctors have prescribed me meds a series of what I fondly call my "don't go off" meds. I'm not happy about this at all.  I'm not happy about getting so outraged and enraged. GOD teaches us to be kind to each other and to be cheerful. All of that busts out into one big FAIL when it comes to my annoyance with others. Sometimes I even cringe with some people talk...the voice annoys me. Or how about the friend that THINKS they know what you are going to say, but in fact what they DO say has NOTHING to do with what was actually going to be said? These things and so much more just set me off.

I'm praying about this. Being so angry does not help. I'd love for this aspect in my life to change for the better.

MS has not only changed me physically, but emotionally as well.  Please donate and allow me to spread more MS awareness. http://www.gofundme.com/write-4msawareness

Motherhood

I dont know why this MS Monster has taken control over so much in my life. One of the biggest joys of my life is constantly being challenged... Motherhood.

  I'm a great mother. I've raised three children since diagnosed in 2004. Back then they were 2, 7, and 12 years of age. Fast forward the 22 year old is gone and "angry" because I can "do for him" like other parents can in terms of giving him free room and board and bitter because he had to help take care of the little ones because I got sick. The now 17 year old frankly is my biggest sympathizer but is also super ready to go to college and be on his own. He says he has always been under "us", and now he needs to "fly away and leave the nest".  That's making me sooooo sad, seriously.  My now 12 year old struggles with ADHD and her birth father constantly makes it known to me and to her that she should go live with him. He's unsympathetic to MS and to ADHD, and he makes me struggle to take care of her on my fixed income.  He won't pay his child support the way he should, so that makes it harder on me.  He wants me to get a job, but I am 100% disabled and each time I've tried my hand at the "work force", I've been sent to my bed in relapse. Seemingly I can only "work" for myself because at least I know my limitations.   So I struggle with what I have.   Because he has more money than I do, sometimes she wishes to go to him. Because I enforce rules that he does not, she wants to go live with him.  

This is nothing different than any other parent who is dealing with co-parenting issues.  Whenever parents are not together, there is a chance that children will try to turn one parent against the other.  

 

Being a mother living with MS isn't easy.  Please donate to my cause http://www.gofundme.com/write-4msawareness 

Type-ooooooooooooooooooooo

I'm tired of making typos.  In 1997 I tested at 98wpm .  A year later I was at 124wpm.  The following year I scored at 136wpm.  Now...2015...my left hand is bothering me and i'm in typo hell trying to get by on the keyboard.  It's sad, limitations.  It takes forever to type and i'm like..... "this is not me"/.

But it is me.  It's ME, limitations and all.  It's me that has to type with two fingers or a pen if I can.  It's annoying.  It makes me sad.  It takes me all day to write one paper.  I can barely read my own handwriting.  This sucks.

I first noticed my left hand acting up while testing.  Then it was confirmed when I tried to type on my laptop.  I cried as I had to grammar/spell check the hundreds of red lines on my paper.  I'm looking for a talk to text app to assist me.  But this is hard and it saddens me.

Please donate and help me fund some of the things being on disability won't allow me to do. I really feel like massage therapy can help loosen up these tight muscles and damaged nerves.  Please help http://www.gofundme.com/write-4msawareness

Pain On Fleek 2

I'm having a rough time at 2:44am. I'm completely in pain. My fingers and palms hurt the most, then my arms up past my wrists. Then my neck. And my back. My feet hurt. My butt  cheeks are sore. My thighs burn a bit. My nose is sore. So is my elbow and hip. This is "normal". 

I'm so pissed because I had to take a pill to sleep and for pain. Tezapham.   My pain is on  fleek"  x 2! http://www.urbandictionary.com/define.php?term=fleek


I've not been on pills for some weeks because I'm trying to detox my body...lbut tonight I have no choice. I'm hurting beyond simply ignoring it. I think my stress has caught up to me so now I lay in bed suffering thinking of dying perhaps. 

 That's why I took the pill, so I won't want to die. Honestly I want to live,Lol....it's just the pain is severe. My mind is racing.

There was this Danish study of suicide among the MS community. 
" Results: In all, 115 persons (63 men, 52 women) had taken their own lives, whereas the expected number of suicides was 54.2 (29.1 men, 25.1 women). Thus the suicide risk among persons with multiple sclerosis was more than twice that of the general population (SMR = 2.12). The increased risk was particularly high during the first year after diagnosis (SMR = 3.15)."

 I can see that. Though I of all people will Never commit suicide (my favorite cousin broke my heart when he did), it seems a reasonable escape... to be void of this pain. 

This pain sucks. People are too sore themselves to give me the quality of life I need with massage and money is too scarce to give me the proper diet I need completely.  I'm not going to do myself in but something has to change soon. 

  Insurance won't cover massage therapy, only pills/narcotics. I am doing a fundraiser but I know that takes time because Ms is one of those invisible diseases.  I'm going to have to spread more awareness,  door to door if I have to. We need assistance but nobody wants to help. 

Prayer for me getting a cure for this MS monster. It's literally killing me.

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

Works cited
http://m.jnnp.bmj.com/content/76/10/1457.full