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.

Day 15

Sometimes I go through the worst relationship issues with women, but I thank God for my husband Rafael "Jesus" Cooper who sticks by me no matter what and never abandons me. I've got real abandonment issues because of the relationship I had with my mother. Because she left me, tons of horrific things happened to me. I was no longer safe. I've forgiven her, but im damaged for life and it affects me horribly when a woman (or man) abandons me. Because of her leaving me, i got mollested, raped, acquired a drinking problem at age 14, and left home at 16. Growing up knowing that she was around but just not with me killed me slowly for so long.  I have flashbacks and it is a nightmare. Time heals but it's between now and "time" that's the difficult part. 

The break-up rate for spouses/friends where one has MS is over 90+%. There are several reasons as to why this happens but it is an ugly statistic that goes with this disease. In most cases, the healthy person just can't cope with the disease and thus the split. 

I get that. The statistics scare me and I'm always feeling bad about my special needs because it can be a lot and I'm afraid it will overwhelm people and they will leave me.  Most people cannot handle that my caregiver (Rafael, my husband) has to assist me with my daily living (assisted living). Because we are twin flames, our connection can be intimidating or cause insecurities. But its very necessary because those statistics scare the hell out of me and I've had countless "loved ones" leave me high and dry due to my disease and the extra assistance I require.

I'm thankful for my husband. He takes the mommy nightmares away. I try to minimize my needs so that it's not too much for him. I'm seldom without him, as he is the only safety I have (proven). He protects me, and I protect him. We protect everyone else in our family and tribe. He's giving up everything to ensure that I'm healthy. Anyone that truly loves us loves the fact that we do have this bond. It doesn't prevent us from loving others because we spread love and light, we just love together. Sometimes darkness from others shades our way but we are loyal and faithful to our family and our marriage.

I don't like what MS has done to me or Rafael. I don't like that we are looked at sideways because we are inseparable. Codependency isn't fun like it seems to those on the outside looking in. Even "insiders" dont get it and definitly don't always support it. I know that can be intimidating and make others feel neglected because we require so much solitude with each other, but it has to be like this because its safe and has shown that I have decreased tremors and seizures... And it's worth it.

Having security that I have someone by my side means everything to me. Having someone to look after me and my kids is essential. Just knowing I have Rafael makes me feel safe, and anytime that is comprised I have fears, anxiety, and symptoms begin to appear. I can't apologize for the way I have to live. I just want to be loved and cared for. I'm safe with him.

Safe from the statistics now, I'm focusing on my health, my husband, and my family. I'm pulling myself together and I'm 15 days off meds despite my personal issues with our former girlfriend. I'm glad we have our friendship but I have to keep a little distance to keep my health stable. I'm so disheartened by so called loved ones leaving me because they cant handle my special needs. So many "chuck deuces" at me and disappeared out of my life due to complications with my MS and the way I have to live (and love) in relationships. Everyone says they won't leave but they do. It's a lie they keep convincing me to believe, too. I wear my heart on my sleeve. I have accepted it all, but it pisses me off because I didn't ask to be this way but I AM. It's too bad if I dont want to live this way because I'm choiceless. I dont get to just walk away from it. If we love each other we should stand by each other and if its hard then we just have to pray together and work it out but leaving is like death to me and it is scary.

Life is filled with ups and downs and this too (heartache and disappointment) shall pass. Everyone in the healing house is rooting for us to find a cure, and I'm thankful. 15 days free in this crazy world is amazing. I am blessed.

Say no to stress.

Setting New Boundaries

  I wasn't going to post this but it's important that I tell my MS story completely so that I can continue to help others..

God help me but too many times, I've been down. What I can't do is needy relationships; i'm disabled and I qualify as  "needy", if anything. Needy relationships; They are exhausting and cause me to be on medications; most times because of the anxiety it causes. I'm not doing that again.

Needy relationships cause me anxiety and panic. Headaches also occur. See, stress is a huge factor in a MS patient's health. Stress can lead to seizures, organ failure, symptoms, or more. So the stress of stress freaks me out. The stress of a needy relationship can effect other relationships around me,too. And it simply isn't good for "we".

  I get that we all long to be loved, supported, understood and accepted. But honestly you can do these things without a lot of physical attention. If your relationship does not allow for a lot of physical ( disabled people, military, prisoners, etc), then you'll have to deal
with someone who can handle being without you. Also I'm afraid of germs, or anything remotely contagious, so.the first sign of cooties has me running away fast.  I'm a MS Patient among other things so I require a lot of solitude, which only includes the company of my caretaker husband. " We" have MS.  I shouldnt have to keep explaining it so I say it once and thats that. I hate that some people dont value the other aspects of friendship outside of the "me me me" viewpoint. For other relationships, Talking means a lot. Eating meals together is great. Having fun together or sharing in an activity together screams attention and affection. It's when those things are overlooked or underappreciated and they are just not good enough that " needy" comes to mind.

I found this to be true: There are three basic relationship type people—secure, anxious and avoidant. Secure people are warm and loving and most likely were raised by a consistently caring and responsive caregiver. Avoidant people , whom psychologists also call "dismissive," try to minimize closeness and often were raised in an atmosphere where neediness and insecurity weren't tolerated (my environment).

Anxious people are the ones who typically are seen as needy. They worry about whether their partner loves them, and they most likely had parents who were inconsistently nurturing. They often are emotionally overwhelmed Or they might ignore, deny or minimize their needs, and then look to others to fill their emotional void in manipulative or indirect ways. The bible speaks of not being anxious. Wow. Look at GOD.

Eventually, as I knew it would, I've become emotionally overdrawn with the neediness of relationships. As a MS Patient, I'm super scared that they will once again send me to meds. I'm not sure of what to do other than avoid them at all costs. But when you love someone enough, you can try to help them know how to love you. MS doesn't mean we can't be loved, it just means love can't be the stressor.

I found this online: Needy people often accomplish the thing they fear most—they push their friend or partner away. "The anxious person can wear out their partner," says Farmington Hills, Mich., psychologist Carolyn Daitch, author of "Anxious in Love."

People can learn to calm their anxious, needy responses. And their loved ones can learn to understand and set boundaries.

And really that is all you can do. If people can't respect my boundaries then I have to.

In the new healing house, there is no room for needy relationships. I'm gonna send out memo's too. Needy need not apply.

Re-homing Furbabies

I need to place my dogs somewhere and since they are not puppies, it's a bit harder, I think. Is there an organization that could maybe help me? Or will anyone here adopt them possibly? It's a Boston terrier and a chihuahua . They are some sweethearts but being disabled isn't making me the best pet owner...I'd like them to have a new loving home in a pet-friendly enviornment if possible.

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.  

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.  

http://supportmsawareness.blogspot.com/p/donate.html

What hurts the soul

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

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

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

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

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

 

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