Wednesday, November 30, 2016

Making Up The Bed

Lately every time I say I'm hurting, everyone around me says that they are hurting too.  I suppose it makes me feel like I'm not alone.  Weird, right...connected by pain.  For me, making the bed is a hard thing to do because it really hurts my arms.  I'm sitting here, just having made the bed, and my arms feel like i've been lifting weights.  My reality is that nobody truly understands this, so i've stopped asking for help all the time. For what?  If I depend on others, the bed won't get made.  So I do it in pain because I have to.  The same way I have to live this life in pain.   

Friday, November 4, 2016

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. 

Tuesday, November 1, 2016

Musculoskeletal pain please go away

My body hurts.  Pretty much all the time.  I'm dealing with it.  I'm currently not on any medications, and so there is no relief from narcotics.  I'm having to choose between my comfort and my organs; I choose pain.

Musculoskeletal pain (nociceptive pain) is caused by damage to muscles, tendons, ligaments or soft tissue. Musculoskeletal pain in MS feels like the pain from common injuries unrelated to MS, such as a sprain or pulled muscle. ... Muscle or joint pain due to changes in posture, spasms or muscle stiffness (spasticity)

Cannabis, hot showers, organic herbs, and any other pain relieving assistance I can get, I'm all for. As long as it's as organic as it can be, I'm with it.  I find that putting unhealthy things into my body has really damaged my well being to the extent that I'm nauseous, and extremely paranoid.  Big Pharma has done a job on me, and now it's time to regain some of my soul. I'm trying...one day at a time, I'm trying.  To cope.  To live.  

Musculoskeletal pain please go away

My body hurts.  Pretty much all the time.  I'm dealing with it.  I'm currently not on any medications, and so there is no relief from narcotics.  I'm having to choose between my comfort and my organs; I choose pain.

Musculoskeletal pain (nociceptive pain) is caused by damage to muscles, tendons, ligaments or soft tissue. Musculoskeletal pain in MS feels like the pain from common injuries unrelated to MS, such as a sprain or pulled muscle. ... Muscle or joint pain due to changes in posture, spasms or muscle stiffness (spasticity)

Cannabis, hot showers, organic herbs, and any other pain relieving assistance I can get, I'm all for. As long as it's as organic as it can be, I'm with it.  I find that putting unhealthy things into my body has really damaged my well being to the extent that I'm nauseous, and extremely paranoid.  Big Pharma has done a job on me, and now it's time to regain some of my soul. I'm trying...one day at a time, I'm trying.  To cope.  To live.  

Wednesday, October 5, 2016

Meibomian Gland Dysfunction and Dry Eye

Today I went to the eye doctor to check on my eyes. I've had so many headaches and loss of vision that I wanted to find out what was going on.  Denver has a wonderful health system, and I was taken very good care of.  My doctor found me to have Meibomian GLand Dysfunction and Dry Eye.  The optic nerve tests looked good, though there was some swelling in one of my eyes that was an initial concern.  I was given a glasses prescription, and instructions on how to treat Meibomian Gland Dysfunction and Dry Eye.

More about Meibomian GLand Dysfunction and Dry Eye:

The tear film has three basic layers; oil, water, and mucus.  Problems with any of these layers can cause dry eye symptoms. The oil layer for the tear film is produced by meibomian glands on the edge of your eyelids. They secrete oils that allow the tears to stick to the surface of the eye.  If the glands are deficient or clogged the watery layer of the tear film evaporates quickly, leaving the eyes dry.  Sometimes people with oil layer deficiencies will have frequent reflex tearing as a result.

One thing that helps is fish oil or flax seed. These are things on my MS diet.  I'm so glad to know that these are also helpful in what's going on with my eyes. I will still have to have a MRI to see if there is still an optic cyst, etc.  There's some pressure behind my left eye.  With Multiple Sclerosis, vision problems are common so I'm glad I got on top of this.

I'm also still gaming on PS4 GTA online.  It's challenging with my eyesight but at least I know what's going on.


Wednesday, September 14, 2016

Abilify

Today I started Abilify.  No, it's not the cannabis; it's the world that i'm trying to fit back into and this is part of the treatment.

I said before that I do not play about mental health.  In 2004 when I was diagnosed with MS, I was mostly upset because it affected my actual brain.  That's going all in.  I was devastated.  I began twitching long after the initial relapse was gone and I was in "MS Remission" because I'd have to relive the "bad news" over and over and over again constantly.  Learning to communicate with others was simple enough because I would hide the fact that I was reliving it over and over again.  And thais the PTSD aspect of it and I typically don't get treated via pharmaceuticals but because so much of my cognitive problems have gotten worst over the years, fast forwarding to 2016 as of today I am on four different psyche pills to keep me sane.  It was three initially but because I really wanted to punch the MS doctor in the eye, and the fact that I can't let it go, we felt it necessary to treat my psyche issues asap instead of letting them go, and they understand how I was treated in that MS appointment was wrong. Thank GOD I had a witness, ya know, and #kochecooper to see about.  It would have been a hot mess had I just gone off on him for not giving me adequate treatment because he wanted to push more pharmaceuticals.  This, coming from a man who clearly did not read my chart and know that I'm a full psyche patient.  smh  I don't know, I stay to myself when I have to however the pain of MS has been being treated by organic means because I refuse to put some MS stuff in my body if they do not have a cure for it because the risks are too great.  And I know they are too great because I have an entire team behind me helping me not put unnecessary meds in my system.  Apparently MR MS NEURO wasn't on board, smh.

Today I drank water and ate a salad.  I ate a lot over the last few days with a full time caregiver but alas I have a few days on my own.  I'm going to try to eat.  but MS does give huge head pain and I was denied massage therapy or acupuncture unless I pay for it on my own by the MS Neuro doctor, so that's where I a.  The pain is too unbearable and I have no idea if there is anything wrong in there but they want me to take meds not even having a MRI.  Clearly they saw that I was not walking straight and no, I hadn't taken ANY treatment that morning, went in just my un-medicated self.  My pain was at a 5 perhaps because I got a brief massage before the office visit.  So today my head is hurting out of my mind through my eyes, in my temple, in the back of my head, on the top of my head and when my sis called she said "go smoke" so I did and it finally went down a bit.  But then it came back and I tried to sleep it off but I wasn't at home so it was very uncomfortable. I don't want the pain meds, I want the massage and acupuncture.  It's just not fair. They know what I go through.  THere is no NEED to take those meds to slow down the progression if you see that yes ,I have MS, but I am managing everything with the help of being in a zen environment as much as I can and getting the proper support I need and being in agreement with me and my tea on my treatment.  This neuro ms doctor told me it was too expensive to give me a mri.

Anyway,I still have time to make a decision.  I have to research more, but I have readers block and writers block becuase ive been mad at the doctor.  smh.  mad at life.  sometimes i'm mad then sometimes i'm joyful so it's all weird.  But I'll save that for another post.  That's another story altogether. Peace, love, and light and please pray i get some organic therapy for my pain.  My entire body is cramping so i'm going to sleep.  Oh, and not to mention over active bladder, also something acupuncture could stop.


Sunday, September 11, 2016

Down Two

Well...I'm down to 114lbs.  Yes, that's a lot of weight loss in two months.  HOWEVER, I can eat with "meal prep", so my caregiver is with me full time in order for me to eat.  And I'm eating. I'm cute and all but 114lb is not the move, not when two months ago I was 130lbs.  I have no "desire" to eat but I'm hoping that with no stress and assistance in eating, the weight will pick back up.  I still have tingling in my legs and feet and hands and arms nearly everyday and that has not changed, my fatigue is great, but I'm not having as many MS symptoms as I've had in the past...symptoms that I believe came from being triggered from all of the medications that MS patients take. And I'm so upset because when I went to the MS clinic, they were not willing to talk to me about organic options to treat MS.  It was basically "You can take one of two medications to stop the progression of MS, but MS cannot be cured".  I'm so annoyed at this point.




So now I'm on an eating plan.  My caregiver is here and my case manager brought me some raw foods so i'm going to work on my book and try to force myself to eat.  LOL Funny story, which I may do a story time about ( I don't know ) is that the other night my caregiver gave me some food to eat while I was really sleepy (my fatigue and the meds that I am on make me sleepy a lot anyway) and I was eating it while sleeping.  Too funny. See, I'm still trying to smile through all of this.

What I do realize about MS is that as a neurological disease, and that controls every aspect of your life.  Including your appetite. I never really feel hungry.  Ever. Initially I thought it was an aspect of my depression which is common with depression, but this is more than that.  I can go days without eating and I know that If I'm not monitored, I won't be bothered with eating.  When I went to visit my children last Sunday, my son actually fixed my plate for me and that's what made me eat it.  It was delicious (my grandson's mom is a wonderful cook and I promised her I would eat the meal she was preparing).

For some reason, I feel like even moving around decreases calories, and so because I walk two to three times a day, and not eating well, it's not looking good.  I know that once I'm full, I'm pretty much full for a long time and my bowels are not really consistent and I'm constipated a lot...so I know my system is a bit slower than others.  I've been noticing that.  Like even when I was on the all liquid smoothie raw diet, I still wasn't only defecating out liquid like one would think.  I was still having constipation, probably from weeks ago.  It's so weird.  Oh yeah, sometimes my appetite will kick in and I'll be super hungry, but then it floats away again for weeks on end. It's not healthy.

There are MS patients who go through this who are on medications for MS and also there are MS patients who go through this who are NOT on medications for MS.  There is no cure for MS so taking the MS Medications won't solve this issue, we can only treat our symptoms.  And because anything organic is basically on my own dime.  smh I'm going to look into getting some Zinc, etc, and continue to live in my zen environment.  My psychiatrist is working on getting me a medication that may trigger my appetite, as well.

As always, I'm keeping GOD first in my life and i'm thankful for the food that I do have available and I pray I'll eat it, even if it depends on someone else making sure I'm being fed.  I'm eating to live.


Tuesday, September 6, 2016

Rapid weight loss

I hardly eat. I'm 116 lbs. Saw the MS doctor today and was informed I need to be on a MS treatment ---- even though there is no cure.

Friday, September 2, 2016

Caregiver Duties

Top 10 Duties of a Caregiver

Although a caregiver’s work varies with different sets of duties each day, there are some basic tasks that remain the same when caring for a parent or senior loved one.
Take a look at these top duties of a caregiver to learn more about caregiver responsibilities and the rewards that come from caring for a loved one:

1. Prepare a Care Plan

Preparing a care plan that addresses your patient’s strengths and weaknesses is necessary to create when beginning your caregiving journey, so that you can determine how many hours of care a day your loved one will require.

2. Assess Medical Needs

Does your patient have prescription medication or need help with pain management? Meet with a doctor who can assess your loved one and create a medical care plan so that you can provide medical assistance at home.

3. Monitor Medication

Monitor your patent's medication according to their medical care plan, which should specify your duties and what times of day you should provide medical assistance to them.

4. Assist with Basic Needs

Assist your loved one with their basic needs, which could include: bathing, grooming and toileting.

5. Prepare Meals

Food preparation becomes increasingly difficult as we age. You can help your parent by doing their grocery shopping or preparing their meals, and by monitoring their nutrition.

6. Housekeeping

Maintaining a home takes more time as we age and become less active. You can provide assistance to a loved one by doing dishes, vacuuming or taking out the garbage.

7. Transfer

Your patient may have difficulty transferring – from bed in the morning to chair in the afternoon, for instance. Be prepared to help them move and make them comfortable.

8. Transport

Transporting your loved one to doctor’s appointments and other activities will become a common caregiving duty.

9. Companionship

In the midst of all these duties, it’s easy to forget one of the most important parts of caregiving – companionship. Focus on how rewarding it is to care for your parent and know how thankful they are to have you too. When you are challenged, these inspirational caregiver tips can help you put things back into perspective.

10. Monitor Performance

Finally, look at your loved one’s care plans,monitor the performance of their care and speak with a medical professional if any adjustments need to be made.
These duties are essential caregiving tasks, but it’s also important to remember to adjust them as necessary for the patient or senior that you’re caring for.
What has your caregiving journey been like with your patient? Do you have any caregiving duties that you would like to add to this list? Share your suggestions with us in the comments below.



Thursday, September 1, 2016

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.

Saturday, August 6, 2016

A Beautiful Mind

I have no idea if I've said this before, but this entire experience with MS and what it did to me, on top of the PTSD and everything else reminds me so much of the movie "A Beautiful Mind" starring Russell Crowe http://abeautifulmind.com/ .  Even though the character suffered from Schizophrenia, the fact that someone so smart and on top of the world would take such a dive due to illness that effects the mind.  I feel slighted in so many ways even though I try not to.


I'm just thinking about how things could have been.  I'm striving hard to make turn things around.  That's why this latest stage of depression or whatever that has me not eating much and being just unable to feel and be "normal" without roadblocks in the way is ...well, depressing.  With PTSD, you really have a hard time gaining emotional control..it's a struggle.  

Thursday, August 4, 2016

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.

video


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.

Sunday, July 24, 2016

Identity issues

I'm so hurt right now. He checked the mail and a letter from someone had come informing me that my new direct deposit would be going through. I dont know how this could be true because in reality never was able to complete the request.. I'd meant to but got the wrong info so I was going tomorrow.  Today is Sunday, I'm going Monday so how can this request be in?

So I freaked out. They are closed today, so is my doctor,  so is my manager.  How did this happen?

People that I trust have my personal information but I handle my own business so I'm afraid someone has used my identity again.

It goes deeper than that. On a spiritual level I feel cursed and alone. Seems like I've had it bad since day one. I really have to question my existence because life cannot be this horrific.  I'm terrified and it's as if I have to depend on the enemy in order to get by. I don't feel safe. I don't know who to trust. I don't know why any of this os happening to me.

My skin itches, and my legs hurt and I am huddled up in my room...'Done cried my eyes out'. I'm sick.  But I won't harm myself...what, and rid myself of all this awesome torture and determination? No, apparently someone or something will surely kill me, because I just keep going and going and going on this hellish existence out if respect for my creator, the universe, and because my life is not my own to take. I'm stuck.

I thank God I have a bed to sleep in, shelter, the kitchen stuff tho meek just perfect because I have lost my desire and will to eat solid foods, but I just very healthy twice a day at least so I'm getting pure organic nutrients.

I can't stop the images now. Every bad thing and recent conversations and ...just all sorts of thoughts race through my mind right now. I do not want to talk to anyone. I want to sleep or game. I hate that I've seen movies like the terminator and like anything that brings me into more hell and violence. 

This is the life of me, raw freak out moment. I'm going to take a nap. I refuse to take a xanax.  I had some cannabis so I'm beginning to relax a bit.

Tuesday, July 19, 2016

clonazepam

So I'm now on Clonazepam instead of xanax.  The side effect i'm concerned about is that Some people have thoughts about suicide when taking seizure medication. UGH, I mean....I'm already depressed enough. I am not suicidal but lord knows i don't like living like this....so what is this pill gonna do exactly to make me wanna end it all?  Ugh, whatever.  I'm keeping myself in my prayers. 

She says it's for anxiety.  


And prazosin that I take at night should keep the nightmares away she said.


And the prozac in the mornings. This is too dayum much.


I'm taking cannabis for pain because i refuse to keep taking a gazillion pills. I just wanna come out of this.  But this is the only way to keep the thoughts from taking over.  


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.  

Wednesday, July 6, 2016

Trust

I see my Dr tomorow she will help me through this. I'm lost and can't trust a soul.

Tuesday, July 5, 2016

Losing my mind

The most horrible shit I ever could have imagined was screamed to me in a horrible outburst that I keep reliving over and over again, I'm past gone, and I'm trying to hold it together in front of my kids and the one person all this insanity is surrounded by is the one person who is helping me not seizure, through the terror, through everything. I'm on pills again (friggin' prozac, xanax, something for high blood pressure and baclofen and I keep forgetting to make a neuro appointment which i'm gonna do tomorrow. My legs tingle. I almost had a small tremor attack. I can't eat solid foods, only smoothies and water. Not even eating fruit.  I have crying spells throughout the day, I'm scared TO DEATH of everything, of people, of the unknown, of living. Death beckons me, I hear it.  All my life nightmare after nightmare. To hell with the judges, i'm trying to survive and trying not to snap. Death would be a gift right now, I really need life insurance asap. GOD bless us.

Life isn't always pretty, mine never has been. 

Saturday, July 2, 2016

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.

Friday, June 24, 2016

HURTING LIKE HELL

video


So I am finally out of the PTSD episode or series of episodes that I was going through last week and I feel a lot better however I'm having a lot of chronic pain right now that is not making me feel better at all.   I have been getting exercise I want at least 8 blocks a day, I say that because the park that I go to is 2 blocks to and then two blocks from and then I do that again later in the day another two blocks to and 2  blocks from so I'm getting exercise for sure.   I don't feel like I'm overdoing it but even walking feels like I'm overdoing it.   I did a few stretches but not anything serious because I'm in pain and I get that exercising will probably help the pain but from what I'm experiencing it is definitely not helping the pain.


I'm on a muscle relaxer called after baclofen and it's 10 milligrams tablets. But those are prescribed for twice a day and because of my paranoia against Pharmaceuticals of pharmaceuticals, I only take it once a day on the days i'm brave enough to take it which is probably why I'm hurting.   I really don't know how to get past the paranoia in order to get treatment.   I am going to get some food assistance since primarily how I treat my conditions are with diet and herbs.  Because I'm still considered low-income with all of the expenses I'm not eating as healthy as I need to.   Eating unhealthy is probably causing me to not have enough nutrition.   Not having enough nutrition means that my body isn't getting what it needs.   Hopefully my case manager will be able to assist me with this tomorrow.   I'm going to make a list of all of my concerns and divide that list out to different people that handle those particular situations and my health case.  


On June 29th I have two doctors appointments the first one  is my psychologist,   and the second one is my primary care physician's office.   Physician's office because I really don't even know who my doctor is. I've only seen them once or twice.   the purpose of a primary care physician visit is to get a referral that to neurology.   There is nobody monitoring my Ms or managing it except for me.


Another thing that's causing me pain is my depression.   my daughter's family is not returning my calls like I need them to and that was the agreement.   so now I'm worried all of the time.   speak with my daughter but I need to speak with an adult that's caring for her so that I can follow up,   and I just feel like they're lines are too busy to communicate with me.   that's not going to work with me.   I've had my children all of their lives for this is the first time I've ever been away and I really expect everyone to make this as comfortable as it is as it can be for everyone.  If I have to go through it as I rather just have my daughter with me.  There's just so much I don't understand.   I'm still so upset that she didn't even make it back to me on the day that she was supposed to because she didn't get to her proper tutoring during school year and had to take a summer course,  which meant that she couldn't come to see me on our agreed date. Now her family has decided to go on a cruise which I'm happy that she can go because I can't afford a cruise but I send money every month and I can't do anything and they are really doing a lot of stuff except for calling me.   We're definitely going to have to have a meeting but first I'm going to get my daughter because I can't take any more anxiety about this situation and I never would have agreed to it had I known that I would have uncomfortable moments like this so many miles away from the ones I love.


I made a video to basically document my pain because with my memory the way it is more than likely I will forget and not have an opportunity to get help from the doctor.
One of my good friends told me the other day that I was being Manic and then I realized that I was being manic and so I'm going to have to address that with the doctors as well.   Love and light peace and blessings and  Please support MS and PTSD awareness.  PS, that’s my husband in the background playing PS4.

Monday, June 20, 2016

A Brighter Day For The Summer

It's the first day of Summer! Today will be a brighter day. I'm so blessed to have a partner I can discuss my issues with who understands that what I go through with PTSD stemmed long before he met me and that my life has had tragedies, traumas, and horrors that I simply cannot shake without medication, which I do not want to take.

I began posting about it on facebook, then decided to delete it (not before the quick screen shot) because need to read about this.


I'm fatigued. My legs and feet are tingling.  I"m honestly tired of talking about it so I think I will just try to focus on other things.   My mind has been racing for days and I really want to turn the power button off on the remote lol.  Oh, there is no remote. Or is there?  I find that distractions help keep my focus off of the flashbacks, so I try to get engrossed in online activity, especially videos on youtube. My favorite videos are DIYS, Interviews, and even movies. As I stated on the now deleted post, I am not being medicated for this. My only concern is that my blood pressure will get too high with the sudden surge of high intense emotional anger that comes about when the flashbacks occur. 

The heat of the summer brings a lot of weakness and the need for more water intake.  I'm really going to continue to focus on getting healthier despite this hiccup with my psyche. I have a lot of triggers but my soft spots are my children, so that's what I'm focusing on.  
<3

Friday, June 17, 2016

Making MS Patients Feel Worthless is WRONG

"I have to be the one to take care of you". "Oh, you probably can't remember". "What am I going to do with you?". These are things so called loved ones say to disabled people with Multiple Sclerosis, making them feel worthless.

I know people. Home training and compassion should teach people how to handle disabled person's feelings, but it doesn't always. Some people feel the need to say this shyt to disabled people. Sadly,  this happened to me and i'm not even bedridden at the moment. "I have to do everything for you". I remember a time when I did everything for everyone else, but I didn't throw it up in their faces. I get venting, but sometimes you have to ask yourself if this is something you can handle hearing for the rest of your life, or if it's just too hard to live with. "Who else do i have to vent to?!" It's sickening to drag a disabled person through that, honestly, because they shouldn't have anyone venting to them about how difficult and burdening for them to be taken care of. That's low key abusive.

Disabled people,  senior citizens, and children have a right for honest heartfelt care. The senior and disabled come with checks, but still are treated worthless. Most times their entire check goes to their care, so they don't have much extra and are depending on others, but to what cost do they have to live through it with no dignity?

I'm saddened because it's happened to me before and it's happening to others and it needs to stop. Verbal and emotional abuse is real. Just like child protective services, there are protection services for elderly and disabled. The government will remove the person from the home and fine or jail the "abuser". Too many people get away with being mean and heartless and thoughtless to those in need of care. We much promote quality care and treatment to and for those who can't help but to rely on the assistance of others. It's okay for the disabled person to bring up their issues but it's not only mean but tacky to throw up a disabled persons downfalls to their faces; they can't help it, a**holes!

If you cannot properly care for your loved ones without being emotionally and verbally assaulting to them, seek help. Go to caretaker classes or family counseling or even volunteer training along with the standard cpr classes. Nobody should be subject to "cruelty from animals".

Just a little food for thought.

Sunday, June 12, 2016

June Gives Me Love Once Again

It's been a long time since I've been super happy, but I AM.  After so much that we've had to endure in this relocation to Colorado, we finally see the silver lining.  We have a new apartment as of June 10th; a new home.  June has always been a special month for us, for it's when we officially eloped to be wed. June 29th to be exact, so we're right on time, I think.

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 We are incredibly thankful to GOD, so very grateful.  Along the way there were those who prayed for us, and those who pitched in to assist.  Living in poverty is the reality for so many chronically ill patients, and in my situation where my spouse is also my caretaker, we've not been excluded from that group of patients.  Being on my own since the age of 16 has been a true journey in itself, but now that I Am someone living with multiple sclerosis and PTSD along with a host of mental and physical conditions  including chronic pain, it's become more difficult. 

There are a lot of other things we needed aside of housing.  Housing will allow us to spend time with our children, for sure, because we have a place for them to come "home" to.  I love "home".  Home is where you make it, for sure, but being in a comfortable and conducive situation is the recipe for a happy home.  I'm striving for that. We came out here with nothing, so once again I'm having to start over.  We need a bed, a sofa, kitchen utensils/accessories, etc.  My husband is working long hours to help provide our needs, but since he's my only caregiver he is limited on what he can do and how much he can do it because he pretty much takes me wherever he goes to ensure my safety.  Until we get "there" financially, it's a struggle. But the best part is not once did he give up on me.  If he did, i'd surely be devastated and I have no idea what that relapse would entail, so I keep prayer in my marriage and in my family life. 

Joy Boy Promotions, Sir Joel Cooper, Binns Al Ndee Al Apache Tribe, and Venita Gaines pitched in first.  Then came Anthony Stuart, Broadway Smoke Shop, Teldren Young, Shanda Howard, Bernice Gardenhire, Victorious Personal and Professional Empowerment Coalition, Wayne Hobbs, and Smoketown Knave.  Most recently Genevvive Toland and Eden Lorvil have pitched in as well. 

Pitching in means assisting me in being able to LIVE with Multiple Sclerosis.  I'm 100% disabled, and now I totally get that. As much as I try to thrive in life, the disability does indeed hinder me.  COmpleting projects has been really hard, but with the assistance of my team it can happen (however i'm rebuilding my team after taking a really bad setback from betrayal).  I feel better with massage therapy to relieve my chronic pain, but again it's too difficult due to cost.  Everything costs.  Everything I need costs.  Things that I don't need due to the dangerous aftermath is pretty much free due to insurance smh.  I wish those things came with life insurance policies smh. So I ask for assistance via donations and my team (those I do have in my corner) and I will help give them exposure/promotions/advertising if they need it. I'm not asking for handouts,just sincere donations with or without expectations. 

This new apartment is the start for a happier life for me. I hope that my husband continues to work hard for his family and I hope people will care enough to help me by donating.  I hope to see ALL my children next month and if not SOME. I hope that my pain will subside (thanks to hubby for picking me up some Aporthcanna relieving body cream from Life Flower Dispensary).  I hope I'll get better.  I hope this touches someone who doesn't have a home to know that prayer and hard work works and sometimes people do pitch in to help us succeed. I hope others will see the light in me and continue to donate so that my light will not dim.  I have faith in all of this.  Now faith is confidence in what we hope for and assurance about what we do not see. 








Tuesday, June 7, 2016

Talking With Strangers AKA Health Care System

I missed my appointment with Dr. Sheldon by 10 minutes yesterday and got turned away.  I went into severe anxiety and depression because she didn't even know anything about a letter for my service animal so that I can get into housing.  How can someone spill their entire guts to you and then you don't even remember that one of the main things holding them up in emotional turmoil is the fact that they miss their children and need housing asap?  How can you forget that you told them you could provide a letter? How can I trust her to medicate me for my conditions if she doesn't even know me, if i'm just another number on her file list.  I feel sickened. I hate confiding in strangers.  It's sad when you call your doctor a stranger, but actions speak louder than words.

Sent a letter to my temporary case manager, Geri.  :(

Of course the heat is totally making me weak.

So once I get the letter I should be okay to move.


Saturday, May 28, 2016

Lost Time

What gets me is that once I have been sent on a tangent, it takes me longer to come down from it than the ones who initially sent me into it.  It’s not worth it, you’d think, but what about if your mind and emotion won’t shut it down.  That’s me, living in hell again and being the only one to suffer from the lost time, time that I can’t get back.

My trouble seems to be communication and depression mainly, as well as anxiety.  Really tired of going through it.  What is Progressive multiple sclerosis?   Things just seem to keep getting worst for me.  I try my best to be “ in the game” but at the same time I'm fully aware but I'm not able to be the same participant but I used to be and it's so stressful not being able to be the person that I am.

It's not that I'm lazy.   I'm far from that.  If anything I'm an overachiever.   The problem is that I underachieve on so many things since MS has gotten worst for me. Using the example of what if I did not have legs ( I can honestly say that because at one time my legs did not work and there is no guarantee that they always will work so when I say what if my legs did not work, I’m speaking from a familiar place)  but I am still expected to walk up the street. With me sitting on the side of the road being an indication of my “laziness”, is there any way that I could go and walk up the street for someone else if I did not have legs to even do so for myself? This is the problem that I'm in; this situation that I am I have no ability to do anything with and yet nobody seems to understand that. I feel like my time here is Lost Time because I can’t get it back and I can’t ever have it again; a chance to be accepted and understood.  MS sucks.

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
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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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Friday, May 27, 2016

Gifts of the Universe

It's amazing all of the gifts of the universe
I knew today was going to be a really good day so far because I started off with a delicious fruit smoothie with protein.
I feel really good about taking advantage of this diet challenge because it gives me an opportunity to eat healthy with no judgement.
It gives me an opportunity to learn and to grow and to share and to independently take control over at least some aspects of my life
because my husband and I and opportunity to do something as a team
I mean truly we already live as a team we make this world happen for us together as a team
but it means a lot to me to be working on a project to be responsible for others and to be team leaders, and it’s awesome.  I couldn’t do this alone honestly and I’m nervous but The challenge  is to make food, to harvest food, and to eat food with someone it's nothing that I take lightly gifts of the universe.

Even with funding being low we were still able to meet our nutritional needs and pleasure our tastebuds, and that really means alot to me. And then today to top everything off to make it even better I walked into Broadway Smoke Shop and received this beautiful letter from my little sister Amanda accompanied by this beautiful help wallet waiting for me that goes perfectly with my big sized hemp dime bag purse.  Especially since I’m wearing my afro out. I feel amazing! I hope everyone else does, too!
DAY 8- #45DayRawFoodDietChallenge #gratitude #gifts
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