Thursday, April 13, 2017

Treating illness and Staying Sane

On and off this machine today. 6 Days of treatment an di know It will get better Right????
  • It has to

Nauseous and in pain! Uuughh!
Yet I believe in the healing.
It's coming. Wait for it.....

Isaiah 53:5
5 But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.


I pay attention to myself. I mean I really look at myself from the outside looking in. I started doing it because I felt like people had no idea who I really was. I started wondering what they saw when they looked at me.

It's hard to deal with any type of illness that doesn't stare people in the face. You know that your sickness or your mourning or your pain is there because you feel it. It just doesn't seem like anyone outside of you understands your real battle. What you really go through. Long story short. I wanted to know what it was like to see me. So I was mindful of my walk and my speech. I would video moments in my life and later go back and see if I could tell I was sick.

Guess what? Nope. I mean there were times that I struggled to get up from sitting. There were moments when I noticed I was shaking or had a tremor. I just never saw a moment that JUMPED out at me, no bell, no red light. just a woman with a few shakes and pauses here and there.

It hit me that people really have a hard time understanding the "invisible" illnesses that I deal with. This is why I argue at the store after parking in a handicap space. I often here people say "Well you look good!" And I am a total mess. I get stares in the mall if I am in a scooter but I get stares in the mall if I am walking to slowly. I hoped that by watching myself I could say "THERE IT IS!!!"  But I couldn't.

I really wish people would educate themselves when it comes to "invisible illnesses." I actually can not even stand the term invisible illness. Why is that? Invisible is defined in Webster's as "unable to be seen, not visible to the eye." Now I think I can speak for many people who suffer from illness that our symptoms are not all invisible. The idea of invisible illness is basically making it "okay" to act like someone isn't sick because you can't see their symptoms. I am sorry, that is ridiculous!

Now I am not going to bash the perception of the everyday person that MS, RA, Crohn's, Autism, Scleroderma, Depression are INVISIBLE. The reason being, that is what is taught via the medical world. My issue is with the medical world. I can not believe that anyone would refer to such life changing illnesses that cause such life changing symptoms as invisible. I suffer with a variety of symptoms. Here is a short list. Tremors in hand and face, balance issues, rash on arms, hoarse voice, weakened left side that is obviously weak, slurred speech at times, and a few more. These are the symptoms that other people can see. You know how I know that? I know that because these are the symptoms my husband and children noticed before I was diagnosed with anything. I will NEVER forget my 13 year old asking me when he was 8 years  old "Mommy why are your hands shaking?" He was 8!!!!!

When I first went blind in my right eye it was obvious that something was wrong with my eye, However it didn't scream Multiple Sclerosis. I suffer with very weak vocal chords. I am hoarse 90 percent of the time but that doesn't speak to chronic illness or auto immune illness at all. It just comes across as a little bit of this or that at different times. It takes a full conversation to explain all that is going on with my body. Why do I take chemo? Why do I need a cane? Why can;t I speak? Why does one leg drag? Why do I slur my speech? Why do I shake? Why do I have seizures? Why am I so tired?

Unless I get t shirts made or flyer's printed up. People could always say, "Oh I didn't know she had that," or "I had no idea it made you so ill."

The truth is, our pain and our grief is so real that the word invisible is sometimes insulting. Some people think that the less you see of the disease he less serious it is. But many of us are fighting for our lives right before you and you have no idea, Is there an answer? How can we make people see Fibromyalgia and Lupus are real and painful and can completely change our quality of life. WE HAVE to educate the people around us. Do not just say "I don't feel well.. Tell them details. Show then what you can, a shaky hand or a muscle spasm, or rash.... Let people know that what you are dealing with is REAL. We  have to understand that people have heard of Multiple Sclerosis, Rheumatoid Arthritis, Scleroderma, Chrohns disease etc,.... And actually the illnesses are so visible they are just missing it.

No they may not see the fatigue or the weakness. But the rashes and the swelling are visible. Show them. Explain to them that these are part of your symptoms.

The ability to shed light on chronic illness really does rest in our hands. I know that it's unfair and I don't think it makes sense but I have no issue showing the world what I deal with. Not because their label of invisible hurts me or insults me but because AWARENESS is a necessary move from those of us that feel we are not being seen or equally considered as a real patient, sick, suffering or disabled.

Okay so what am I saying? I am saying we shouldn't have to be labeled as having invisible illnesses. People should want to educate themselves about any illness that effects someone they love. Many people have cancer. You wouldn't know it if they kept their hair and didn't tell you, would you??? Maybe you would if you recognized other symptoms that you really can see. I am not now nor will I ever refer to any illness that I have as invisible. they are all very visible to me and the people around me. I feel like invisible is an excuse to ignore or to lack compassion. "Well you look good," in other words "I don't see anything wrong with you." I want to scream look closer, you will see more than you ever imagined."

Your illness is not invisible. Your child that suffers with Autism or depression, not invisible! What is not visible is the thirst for knowledge people should have regarding illnesses their loved ones deal with. Where is that thirst, desire, need to know when we are trying to be strong and save face so no one is uncomfortable with our reality. I say invisible illness don't exist. And neither does the idea that pretending not too see something means it's not there.

We have to TEACH them that our lives are effected by the things they cannot see, I plan to do an entire workshop really soon on "Invisible Illness", Giving people an opportunity to ask questions and learn. At the end of the day, the reason they don't see us is not because they don't want to. It's because they don't have to. It's our time to HELP them understand us. And see us and all we endure. Pain like ours is not invisible, it just needs to be exposed.


Thursday, April 6, 2017

A Mother's Work and Father's Too

Where do we learn the simplest of things? At what age are morals and manners and values planted into our spirits to later bloom. What makes us feel entitled instead of blessed, What makes us love our friends and hate our enemies? When does this all take place?

Are parents responsible for everything little Jimmy does? Are we allowing our children to become the feared generation? What is happening? I am so aggravated when I am in a store or a business and I am pushed or stepped over by some child who doesn't know any better. We blame music and we blame friends and we blame the school and we blame the exposure to Reality Television. How about we take some of the blame ourselves. You control your children as long as they live in your house. Everything they do reflects on you.

I know that being a Mother is HARD but it is A RESPONSIBILITY and it is the GREATEST ONE.
I pray parents become closer to this generation of children and not forget about them.
They need US and many of them Do not even KNOW It,

IF you are A MOTHER You know it gets HARD
Teach them to WALK, to READ, to DRIVE Cars
Teach them to KNOW the GOOD from the BAD and MAKE SURE they Appreciate the things that THEY HAVE. Worry and Watch for them whenever THEY ARE LATE. But Allow THEM TO LEARN FROM THEIR OWN MISTAKES. Being A MOTHER IS HARD but THERE IS NO GREATER JOB,.....
There is NO PAID vacation and THERE ARE NO DAYS OFF.
#preparation #reallife #ourkids #amotherswork
Blessingss Too

Let Me Know What Day is Good For You

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Friday, July 8, 2016

What Do I Tell My Kids?

I wish I knew what I could say to my kids right now. As we watch tragedy after tragedy unfold before our eyes. It takes me back to 9/11. I was so stunned and shocked at the time all I could do was cry. I found myself at that very same place this morning. I began to explain to my kids that they were safe. But for some reason it was almost as if I didn't believe it so I could not say it. So we prayed. I prayed for peace and protection and I opened one eye to see my kids seriously praying. Holding hands very tightly and waiting for me to say the right thing. I closed my eyes and I realized that I did not have the right thing to say, I was not speechless by any means. But when it came to talking to God about all the things that are happening around us, I almost felt like I had no right to question him or ask him for anything. I know for a fact I have done things that disappointed God. And I knew how to talk to him about it, But what could I say about a world full of disappointment?

I have six black sons and a husband and 6 black brothers and 7 nephews. I have godsons and I have friends that I feel like are mildly steps away from being hurt or killed by the police. I have a sister that is an actual police officer so I sit in prayer for her hoping she does not come across the wrong person or group of people. I feel like I need to be doing more! I feel so helpless so I write and I write and I pray. I pray hoping that God will reveal something to me that will make this all easier to understand. But so far all I hear is God saying "TRUST ME."

Politicians are jumping to the podium to voice their opinion. The President is stuttering as he tries to make us feel better, How can you make us feel better when we can see the fear in your eyes? I refused to watch the news today. I dedicated the day to just talking to my kids and letting them know that God is in control and they are as safe as they can be with God's love and Mama and Daddy's protection. I started to feel sick at 4pm. I found out earlier that my Mom was admitted into the hospital for heart complications. I felt more and more physical pain as the day went on. But I tried so hard to detach myself from bad news so I could just breathe. So I could have time to comfort my family and time to connect with God.

My grandmother always told us that God will allow even the most painful circumstances for us to FOCUS on him, I thought about that, I thought about the pain and distress I have felt when I was being raped and beaten and held hostage. WHAT DO YOU EXPECT FROM ME GOD????? What do you need me to do to make this feel better and to let me live a normal life free of nightmares and free of the boogeyman. I waited and waited, Life goes on and even though I ache internally from the external actions over the last few months, weeks, days,...... All I can do is TRUST GOD.

My 8 year old asked me, "If the police are bad who can we trust Ma?" And in that moment I was stuck.Unable to move. Waiting on God to give me the answer, My body started hurting and my head soon followed. We do not get a break from all the drama in the world just because we are sick, We still see it and feel it and hurt behind it.

There is an unspoken tension in the air. At the pharmacy. At the hospital. At the grocery store. People are trying not to look one another in the face. Why? Because the News footage and the circumstances of the last few days have created a break. An uncomfortable silence. We have to keep functioning in a way that reminds us that there is still good and love in us.
Everyone is not a bad guy. Keep waving to your neighbors and smiling at strangers. The smoke of confusion and the aroma of racism.....are choking us. You can be on your team but do not let these events create something in you that you are not. Black people are frustrated and aggravated and hurting to say the least.
And I believe there are white people who are hurting for us. The killing of police is leaving blood running parallel with the blood of these black men into the ground. Nurturing and watering the seeds of racism and tension. Be resilient and take a stand BUT DO SO PEACEFULLY...OUT OF CHOICE...NOT BECAUSE WE ARE TOLD TO BE. Ask yourself..Who benefits from a Race War???
DO NOT FIND AN ENEMY WHERE THERE ISN'T ONE. Do not be convinced that we cannot trust one another. Or be friends or love past color. Because once that happens...we all lose.  And I refuse to believe that is God's plan!!!

Who is safe? Who is sleeping well? Who has not cried or teared up in the last few days? I don't know of anyone. I do know that the events of the last 5 years involving people and police officers has had an affect on every person in this country. We are told not to question authority and not to do anything that makes us look suspicious or guilty. I no loner know what these things look like. I don't know the triggers for mania, from the police or from us. So now I am teaching my kids to speak in a way that is not confrontational. To make eye contact and to pray as soon as they see those flashing lights. Not because I want them to give in to abuse or misconduct. But because I want them to make it home safely.

They worry about me so much. You know they say stress and fear cause relapses and increase pain. But I cannot get this thing off my mind. As many of you feel useless and helpless at times like this, So do I. And I lay awake wondering "What can I do to help my kids get through this?" I always end up praying. And telling God that we see him and love him and acknowledge him. We know that he is the beginning and the end. The start and the stop. And then it hits me. Right now in this moment all I CAN DO is Stay in Prayer and TRUST GOD.  Only He knows where this all is headed. For now that is what I tell my kids. the Truth.

I made sure they could read and know to always be polite
We taught them to be respectful and 
that they should always do whats right
They learned that brothers protect one another
And that NOBODY can break that chain
Work hard and love sincerely
Make sure your wife has beauty and brains
We taught them to stay away from drugs and alcohol
Because we know those things can destroy
BUT...We Never said The Police may kill you
When we were teaching our young black boys
They know to be careful everywhere they go
But THE POLICE being a threat to their lives. did we even know?
So now we teach them to pray before they leave the house
And if they ever come across the wrong kind of cop
We PRAY they make it out. (c)vjrs2015


Tuesday, June 28, 2016

Auto Immune Awareness Video!! Please Watch and Share

Hmmm,..:"Wedding Vows"....More Than Words

I am asked time and time again how my marriage survives my illnesses. I am asked if there is a special thing that I do or a way that I act that keeps my husband from ignoring me or leaving me or who knows what. I always start with the truth. I believe that the best part of me is in the honest part of me. The completely open and naked spiritual me. That knows that no one is perfect and understands that we all go through something. And nothing turns out as planned...

I have known my husband for 22 years. He used to drive me crazy. I was really strong willed and determined, some would say I had an attitude problem. But the truth is I just believed in getting what I wanted and I did what I had to do. This was usually an issue in my relationships. I can remember before getting married, I worked 2 jobs full time and I slept for 3 hours a day. I was not hurting for money. I had a nice little savings account. I just wanted more for myself and my son. So I worked hard to get it. Men have an issue with women like me. I know they do. I am a lot like my mom. My grandfather use to say she was untamable.

Well for me it wasn't about being tamed. It was about being appreciated and respected for what I did for myself. I didn't like for a man to act like I needed him. I didn't think I did. I look back and I understand that my husband came into my life when I was very busy, working, college, night job, raising a son, he played sports and i had a couple of other male friends I hung out with. Oh PLEASE DO NOT LOOK SURPRISED! I was a single, hardworking, classy, intelligent, strangely beautiful, independent woman back then, Lol I love me.

Anyway we met and he was handsome to say the least but he wanted to spend a great deal of time with me that I just did not have. Remember we are being honest. So I will say that I could have made the time but I really just didn't want to do the LOVE thing at that time. Well eventually he won me over, He was actually exactly who I needed in my life. You know God knew I was a handful. We seemed to balance each other out. That was cool. We fell in love and six kids later we are still in love.
He is still my King. I mean he rescues and protects and loves me. He is in no way perfect. But he is the base of my strength at times. Always telling me i can when I feel like I can't. He challenges me to do a little bit more. But picks me up when I can't seem to do a little bit.

It's hard to watch someone you love begin to change. They are weaker and they are slower and they are sadder than you ever imagined when you got married. I may look the same but so much has changed. The lack of so much independence has almost broken me. And at times you feel almost like a burden. I miss the OLD ME and I know HE does as well. He wouldn't say it and I love him for that. But I see t. I see it every time I can't walk up the stairs alone,  When i lost the sight in my right eye, I saw it, When I awake from a seizure in his arms, I see it. Not regret. Not a look of pity, A look that says"I wish this wasn't happening to you." I have cried for myself at times. But lately I cry for him and the kids. You cannot give back the time that being sick has taken from us, But we have the most amazing memories and we continue to make them. At times that means everyone gets in bed with me and we watch Netflix.

My husband is doing more than enough with regard to taking care of me when I need to be taken care of, And he is still that source of strength and determination I need. But I give him a standing ovation for sticking with me. For dealing with so many things that we just never imagined would become our wedding vows in moments each day. People will never fully understand the power being sick can have on the entire family. My kids, all boys are so strong. But they break down sometimes. My 15 year old says "I just want to fix you Mom." i wish he could, But the TRUTH is only God can repair the majority of things that have been broken or rearranged in my life. Not even my big, strong, handsome husband can save me this time around.

I am in some ways that same girl willing to do what it takes to make it. I am just doing it a little slower and with a little more appreciation and love than before. I fought with am Ex boyfriend once and I yelled "I do not need a MAN!" He said, "No and you never will." He was wrong. God knew I would need more than one. So I have seven.And a grandson and 2 granddaughters. My sons are like sunshine that returns every single day to the place where the storm began. And my husband is and always will be the MAN that made me KNOW that LOVE was necessary and it is wonderful.

Illnesses come and we have no warning at all. So we are not prepared to deal with the changes or the rollercoaster ride. However, there are some bonds that can sustain anything. I know I am blessed. I have many friends who have no support at all. I told my husband a few days ago that he needed to LIVE HIS LIFE and LOVE ME without missing out on a thing, He deserves all he has dreamed of and worked for. I looked at him. I looked through him and into that Spirit that captivated me so long ago and I saw it. Without him saying a word I saw it. He told me later that when he looked in my eyes all he could think of was "Til death do us part." Whether we are friends, married, or seriously angry with one another I know that He will always be available to me and caring and praying and waiting for me to get better. Make meaningful, sincere, honest connections in this world.

We love and we live as if tomorrow is promised. We take advantage of the ones we love, We ignore them. We disrespect them. And we make ourselves believe that tomorrow I will do better or I will apologize or I will forgive TOMORROW. TRUST ME, if you have something to do over or say better or apologize for or even something to forgive. Do it today. You never know when those vows will show themselves to be more than words.