Awareness- I have to talk about it more

I'm speaking more for my needs. These MS suicides are so horrible, and I feel horrible that I "get it". I'm speaking out more so it doesn't get that bad to me. If I ask for help it's because so much has to be done and I can't be a one-woman team anymore. Not with cramping fingers, cramping and stabbing pains throughout my body, a back that feels broken most times, "fog" / "confusion"...and extreme paranoia about the side effects of the meds I still have to take. It's a lot. People say "don't think like that" but that is our reality, mainly so we won't be a burden on anyone. I'm just being honest. So many times we are frantic because we feel alone because people don't know how to take our honesty, they somehow get offended leaving us to feel even more alone. Nobody wants to help us and we can't really understand that, we just feel like crap all the time and worthless.

Social Security did not give a cost of living increase for 2016. I Started working in 1987. Got diagnosed with Multiple Sclerosis 2004. Had to retire in October 31, 2006. Tried to go back to work because my savings and 401k was running out, landed a job with the government april 2007 AND was awarded social security that same month. I had to make decision so I worked til December 2007 and the government began layoffs, not renewing my contract and my decision was made when I once again began to relapse. After or king all my life, this was a HUGE adjustment.

I still try to work when I can because its too hard living off disability and am building a team we can continue being successful despite MS. MS has progressed in me mainly with mental/emotional, energy/fatigue, chronic pain,and cognitive issues. Financially it's been Devastating to my entire family. My prayers to my MS Warriors that fight this fight of survival along side me every day GOD blesses us to be "awake". I smile behind tears because I AM trying and I WANT TO LIVE. Even though the pain and the woes are telling me its not worth and even when my mind and emotions tell me I'm not worth it to anyone, either. Under 10 people actually care, in my mind and perhaps in reality (I truly don't know anymore), and so i'm here, still fighting for...US.

It's so hard to talk to people. I ask one question and it turns into a whole heated conversation and ends up with me being at fault where honestly there wasn't a "fault" involved. Okay...whatever. Then I'm asked a question and I try to follow up like okay, what are we doing..and it turns into yet another issue. How can people live like this of they can't communicate? People can try to blame me but I know it's not me. I take meds because of them. Because people don't know how to be non aggressive with others. I'm gonna have to remember I'm 43 and that I do have good sense. People Catch attitudes when you ignore them because they cant have conversations the right way. Yep that's right, talk to me crazy and you can just talk to yourself. Meds put me in lala land, take my whole day away, but that's okay...I will have another day, God will make sure of it.

I always accept help as it comes, I have no pride issues, I prefer to work for it. If anyone needs online promo or even an article written about them and their brand please share this link because my team and I are raising money and awareness about Cancer, Multiple Sclerosis, Lupus, Kidney Disease, Fibromyalga, Diabetes, HIV/AIDS, Sickle Cell Anemia, Heart Disease, and overall health and we do work for donations https://www.gofundme.com/write-4msawareness . Help us out heart emoticon

Look Me Up

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

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

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

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

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

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

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

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

 

Emotional Support

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

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

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

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

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

Freaky Friday

My Friday morning started off really freaky. On top of my pain, the fact that two different pharmacists can't or won't fill my prescriptions, and I'd lost my Zanex (the few I have left), I ended up losing my glasses. I'm in a car with 5 other members of my family having a panic attack and trying to maintain a cool composure. I'm screaming inside of my mind hoping I don't throw up. I immediatly went into one of my MS support groups and said "Sorry...gotta vent or I will burst out in tears. I don't want to talk to anyone but I have to because I have to get my 18yr old enrolled into college. I feel lightheaded. Ugh".

Immediately support came and my online friends helped me calm down. My husband also told me to just relax. I have a really great support system most times. I'm blessed that way. And my glasses were in the car near my foot. Ain't GOD GOOD?!

Misplacing things are a common occurrence in the MS Community. "White matter is the brain region underlying the gray matter cortex, composed of neuronal fibers coated with electrical insulation called myelin. Previously of interest in demyelinating diseases such as multiple sclerosis, myelin is attracting new interest as an unexpected contributor to a wide range of psychiatric disorders, including depression and schizophrenia.
This is stimulating into myelin involvement in normal cognitive function, learning and IQ. Myelination continues for decades in the human brain; it is modifiable by experience, and it affects information processing by regulating the velocity and synchrony of impulse conduction between distant cortical regions. Cell-culture molecular mechanisms regulating myelination by electrical activity, and myelin also limits the critical period for learning through inhibitory proteins that suppress axon sprouting and synaptogenesis." Is what I read in a wonderful article called White matter in learning, cognition and psychiatric disorders
By R. Douglas Fields. Great article , and you can read the rest here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2486416/ .
It only goes to show that by MS being a demyelinating disease I'm pretty much like this until we find a cure. I mean, how in the world do you get to the point where you are demyelinating? Who does that? Us Ms'ers I suppose.

My husband's  brother and cousin are in town. I'm socially awkward and I freak out in crowds, but I sure hope I can hang out with them. After everything was said and done, I got home and looked for my meds and found them! I tried anither pharmacy and they filled my pain prescription. I still dont have my new anxiety meds or my headache meds. Something is better than nothing unless the something is bad, but right now i'm so happy.

But still, I'm fully aware of my age and my limitations. I'm 42 so I'm still young. But I'm disabled with MS and in a slight relapse. As my husband pointed out today, "We're disabled". I'm going to be realistic, though. If I can't go out, I won't. But if I do, I have my my missing meds.