Tuesday, May 19, 2015

TRAPPED

It's funny, I've always been such free spirit. Being human and having Multiple Sclerosis, however, has grounded me. I'm humble. I've fought for this. I fight for this. LIFE. ALIVE. AWARE.  AWAKE. INVOLVED.

Sometimes I think of how lucky I am. My middle son just graduated from high school and though he's a bit upset with me, he know's how much I love him and I know that I'm doing the right thing. My oldest son is 23 today, and though he has to spend this day in a time where the struggle is real, he knows we do our best with what we have and that we will be here for him in the end.  My daughter is still sleeping, and I want her to get some rest because the day may be long and worn.  My other daughter is having breakfast, and getting in gear for the day.  My girlfriend is here beside me working diligently on her phone.  My husband is off to the market to help us get restocked on food.  This is calming me...the fact that I know where everyone is and I know that everyone is safe.  When I don't know their status, I feel ill.  Isn't that crazy, that my body would attack me for not knowing that my family is alright?

Even with all my loved ones near my side, I cannot get rid of this headache.  My prescription headache medicine costs too much.  My insurance company won't cover the full cost of my medication,  Fioricet. which costs $145.79 with my insurance. We've taken cut-backs and done what we can, but affordable health care is still an issue.  I'm still trying to come up with utility bill money because where we live there's a leak that the landlord has not fixed yet.  With so much going on it's a wonder I'm not in more of a relapse, but I'm thankful and I appreciate GOD's grace.  This is hard.  And it hurts.  I'm not talking about a regular headache/head pain, either.  These are pains that go through my head like an electric lightening rod.  Surges of pain (like brain zaps) go through my head and I can't afford treatment to stop it.  Vascular or migraine type headaches have even been reported as the first symptom of MS.


When you have multiple sclerosis, also known as MS, the signals between your brain and spinal cord go awry, which can result in pain, fatigue, and reduced mobility as the disease progresses. Some people with MS have only a few symptoms of the disorder, while others have many. You also may find that your MS symptoms come and go while others find them long-lasting. "What's surprising about MS symptoms is that they can affect so many different functions that people rely on every day in their lives," says Rosalind Kalb, PhD, a clinical psychologist and vice president of the Professional Resource Center at the National Multiple Sclerosis Society in New York. "Some are physical, some emotional, and some intellectual. We tend to focus on the ones we can all see, but many people may be living with a variety of symptoms that just aren't apparent." Here are some less obvious signs of MS.

People don't realize how hard having Multiple Sclerosis is. Alongside it, I have chronic pain that keeps my pain level at at least an 8 at any given time.  And fatigue.  And emotional ups and downs.  My entire body hurts, so i'm on all kinds of pills for pain but none of the pain pills stop my head pain.  For three years straight, I had headaches and took BC powder three times a day or more to ease the pain.  I went on a 45 day organic raw diet and poof: headaches were gone.   Money got tight and I had to eat a lot of non-organic foods, and now the headaches are back.  I'm on six different medications and not one will ease my head pain. I don't have money to buy BC Powder.  This is not a good day for me.  This is not how I wanted to spend my son's birthday, but this is where I am.

I feel trapped inside of my mind.  I used to be able to afford having Multiple Sclerosis, but now it's hard to earn any money while being disabled. I'm praying someone will help me pay for the headache medicine.  I'm trusting that my doctor is recommending the best treatment for me.  I just need a little help getting it.  

Saturday, May 9, 2015

I love you


One thing I've always had was the opportunity to have companionship.....With that being said....  

I saw this picture two days ago and immediately thought of that horrible day in 2004 when my cousin Sandy and I received my diagnosis with my then boyfriend "D" [I won't say his name out of respect for him and whatever his current situation is today.  He's a good man. ] in the hospital .  As soon as Dr. Richard Stappenbeck [ who is currently still my MS Doctor/Neurologist/Healer/Shrink/Friend (I can say friend because he really is one of the few people I love and trust).  ] introduced himself and gave me the horrible findings of the MRI scan that displayed at least seven brain lesions that were the result of Multiple Sclerosis.  As much as my memory is faded nowadays, I remember at some point looking at "D" and in tears slurring that I know he didn't sign up for this.  He reassured me that his love was with me and that he wasn't going to leave me because of this.  He kept his word, too.  We lived together as partners until I left in 2006 when I felt our relationship could go no further.  I  honestly didn't want to die unhappy, and that's what I was even throughout the love.  GOD had another plan.

Nine years later I'm where I belong, with whom I belong.  This love, unlike that one, is a premeditated commitment because I came into it already living with MS.  I came in knowing already what kind of life I needed to live, knowing what kind of environment would be best for me, and knowing GOD's plan for us.  Anyone who wants to be in a relationship with someone living with MS should already know the physical complications that arise not only from MS, but also with the psychological sub-diseases that come about or are amplified and the emotional roller coaster that is MS.  

Those who are in my life know that I love them.  One of the most sincere things I can say to someone is "I love You".  Love holds weight.  Love is why sometimes I'm able to come up out of my hard angry shell and allow light to come in even if it's coming from the darkest corners of my mind. I may not be able to do things that people would want me to do, but I am able to love them.  I love you.  I'm able to live a complete and satisfying life because I'm secure in knowing the people whom I give my heart to return my love with theirs because they have chosen to love me despite my illnesses.  And that's BIG.  It's HUGE.  It truly means a lot. 

I suffer from PTSD.  I had a mental breakdown just this morning, so as casual as it may seem, I'm really struggling with things.  I have these breakdowns a lot lately, unfortunately.   I hate this, but my loved ones love me through it, which helps me love myself more. I mean...I could have acquired PTSD from any number of occurrences in my lifetime that would be considered traumatic.  As far as Multiple Sclerosis, yes...receiving a diagnosis of having a life threatening illness and the promise of having more severe medical conditions arising from it is pretty traumatic to say the least.  My inner-environment is so sensitive that any little thing could throw me into a post traumatic stress disorder attack, or worst.   

Sometimes I push loved ones away.  I need a certain level of personal space and honestly anyone who wants a relationship with me has to understand that the primary person in my life is my husband, Rafael, whom we call Jesus.  Jesus and I are best friends, and he is the only person I can feel safe with laying my head down to sleep.  He made the commitment to me that nobody else could make, and for that I love him always.  As I become more and more disabled (for the rest of my life), he's promised to be there (for the rest of my life).  I dedicate my life, and this blog, to him, my wonderful husband.  

Friday, May 8, 2015

Food FOR Thought

What are some meals I can make without cooking besides peanut butter and jelly?  I'm not supposed to cook but i can't keep eating sandwiches and for me, cereal won't do because it cuts my mouth. I need to know what's gonna be filling so I can make myself quick meals when there's nobody to prepare meals for me.  I wait til like 4 or 5 in the afternoon to eat sometimes and that's not really good for me.  Need suggestions. #supportmsawarenss  #feelinghungry


I'll be honest.  My girlfriend was the one cooking for me mainly, and she still does sometimes, but she's not doing as much anymore. She's been really busy.   I'm not any less hungry, but I think she was getting overwhelmed or something...i'm not sure.  Doesn't matter why or what, just that I start back eating healthy.  I did get some assistance with food costs, now I need to know what to get and I need to know that i'm going to be able to get it regularly.  

Carrots are great, but I know they are going to hurt my already sensitive gums.  Fruits are wonderful and I know I'm going to get some avacado's as soon as I can get to a market.  I did a raw food diet one month ( RAW foodism [or following a raw food diet] is the dietary practice of eating only uncooked, unprocessed foods.  Depending on the exact philosophy or type of lifestyle and results desired, raw food diets may include a selection of fruits, vegetables, nuts, seeds, eggs, fish, meat, and dairy products ) and that was fun, so I may even go back to that.  It takes discipline, though, and right now I'm starvin so I'm not sure if that's gonna happen or not. 

I'm researching the right Multiple Sclerosis diet to fit my nutritional needs.  MS seems to be linked somehow to saturated fats and dairy products.  High omega-3 fat content like fist seemed to be linked to better health for MS patients like me.  Vegan diets with additional fish oils can be used to prevent relapses in MS. 

   

MS foods to avoid are:
  • Meat, including processed meat, salami, sausages, canned meat
  • Eggs except for egg whites
  • Dairy products; that is, avoid milk, cream, butter, ice cream and cheeses. Low fat milk or yoghurt is not acceptable. Cow’s milk and dairy products are best avoided altogether as the protein is likely to be as much of a problem as the saturated fat, given recent evidence. Soy products or rice or oat milk are good substitutes.
  • Any biscuits, pastries, cakes, muffins, doughnuts or shortening, unless fat-free
  • Commercial baked goods
  • Prepared mixes
  • Snacks like chips, corn chips, party foods
  • Margarine, shortening, lard, chocolate, coconut and palm oil. There is some debate about chocolate as it does have some good antioxidants, but most chocolate is also loaded with saturated fat, so it is one of the foods to avoid with MS. Cocoa, however, is a natural vegetable product with only a little saturated fat, and the occasional teaspoon in a glass of soy milk for example, as hot chocolate, is fine.
  • Fried and deep fried foods except those fried without oil or with just a dash of olive oil. It is important not to heat oils if possible, and if you want to use just a little extra virgin olive oil, the most stable of the oils, it is a good idea to put a little water in with it when frying to keep its temperature down. Things like fish and chips deep fried in, say, sunflower oil, are bad, in that the oil changes its chemical structure when heated in this way, and tends to be left in the vat for days, with all sorts of unpredictable chemical changes happening to the fats.
  • Most fast foods (burgers, fried chicken, etc.)
  • Other fats and oils
With that being said, The MS Diet consists of all vegetables, fruits, nuts, legumes, seeds, pulses, and grains (so most pastas, rice, wheat, oats, corn, barley, etc), fish and all other seafood, egg whites, and so on.  From these ingredients, one can make a variety of tasty, satisfying, and above all healthy meals.  

If anyone has a restaruant, or is a chef, or anything related to food and you need a promotional write-up or ad placement, please donate at least $25 and get a placement in ON THE RISE MAGAZINE.  We really want to support good nutrition and to find a cure for this horrible disease MS.  



Wednesday, May 6, 2015

MS drugs prolonged use will cause deaths


In May 2015, SOCIAL SECURITY WAS HARASSING ME AGAIN.  OVER AND OVER AGAIN THEY ASK FOR UPDATES ON MY CASE FILE.  I HAVE MS.  I HAVE BIPOLAR DISORDER.  I HAVE PANIC DISORDER.  I HAVE PTSD.  And at the time I had a headache that only BC Powder could calm.  

I don't know what's wrong with me other than those diagnoses.