I have been very humbled by several people in the last few days. First I will start with my 5-year-old Treasured Pearl, Ethan (my grandson). He is so willing to help me with whatever I need. I needed to put up new curtains because my dogs have ruined my very nice shades in my front window. He said “now you can take the curtains down and we can wash them when they get dirty”. He ran around telling the other Pearls with great excitement,”I’m going to help Mamie put up new curtains”. We didn’t get to put them up because I couldn’t find the extra long rod that goes across the 12 foot across window. That’s what I love about old houses is the big windows in the front room. It is what my dogs love too! lol I wouldn’t agree that my Mail deliver loves it though. lol My dogs sound like a pack of wolves when they come to deliver the mail. Poor guys have to come to the front door where my mailbox is.

Here is the next way I was humbled. On Saturday night I went to sing at the Down Home Cafe and Grill in Watson, LA. I talked to my sweet friend, Pam Jeansonne about a fundraiser I am planning for this summer. Without any hesitation she let me know that she and her husband Eddie would help any way they can. They own a karaoke business which we can really utilize for the fundraiser and they were the first ones I needed to talk to before I could get started with planning the fundraiser to raise Awareness to this CCM disease.

Next was my Treasured Pearl, Grace, who is 7. She spent the last few days with me since they are out of school this week. I have white tile in my bathroom. I don’t understand why anyone would put white tile anywhere other than a hospital, (no offense to anyone who loves white tile in their home). I have been physically on my hands and knees, scrubbing the floor, so I could put a heavy wax down that should make it easier to clean. I tire quickly so this chore has been a process. So, Grace said she would help me. Without me saying a word, she got up one morning and started scrubbing the next section of the floor. I praised her and admired her hard work. She did as good with her section as I had done with mine!

The next morning, three of my dogs got into a fight. I was sure that the Walker Hound was going to kill the two small dogs. I know you should never get in the middle of dogs fighting, but I did! I bet you can guess what happened next. The hound bit me on my right thumb. I have rarely felt that kind of pain in my life. I now understand why some people are afraid of dogs. Afterwards, my sweet Grace got my first aid kit out and took care of everything.

I am so blessed and humbled by my sweet Treasured Pearls and friends who are willing to help me with whatever I need.

I hope you appreciate those people in your life, who are there for you, with the little things, as well as the greater things.

Blessings,

Melessia


PLEASE READ THE NEW ARTICLE AT THE TOP OF MY BLOG PAGE!

I have finally found an article that in my judgement, explains this disease. I have CCM2-10 deletion. Anyone with this exact code of the disease are part of my family line. It’s amazing for me to have been told this, because I got a call from California from someone who has this same genetic code. This means someone so far away is part of my family line. Wow!

I’m not sure of what I have written in my blogs because my short-term memory is so bad at this time. I also have the very rare, recently found a on the retina of my eye. It was found on the backside of my eyeball, which may explain why I have headaches that start on one side or pain in my eye. My husband and I went to see a movie recently and we sat in our usual spot that we like, on the first row of the upper seats. It is very close to the screen, but not on the floor. Afterwards my eye hurt for hours. I had to come home and keep my eyes closed in the dark as well as take pain meds. The next movie we went to we sat almost on the very top row and I was ok. Yay, because I love our dates to the movies!

I can now add this to the list of where my CCM’s are located and the deficits they cause in my life. I’m not being a whiney baby, I’m just one of a very rare condition of the disease. I also some years back, started noticing CCM’s on the surface of my body. At the time I thought they were just purple-red beauty spots. LOL Alas, they are not.

I am now trying to find a Neurologist in Louisiana who knows something about this disease. I am at my wit’s end trying to find one, even in surrounding states. If anyones knows of one, please let me know.

P.S. Don’t you love spell check! I do!


So, my neurologist put me on new anti-seizure meds and I have gotten worse. This is because he is only treating my symptoms and not my disease. There have also been new kinds of seizures that I am having that really scare me. I had one last week that caused my face to go numb and actually spasm on my left cheek. This seizure also left me unable to open me eye for about 5 hours. This has never happened! Again I had a small seizure during church on Sunday. I would have ask my husband to take me out, but he would have had to carry me because I was too weak to walk. I am grateful no one else recognized what was happening. All of you with CCM understand these kind of seizures, I’m sure.

Because of the seizures becoming more often and not controlled, I had to go on temporary disability from my job. I am blessed that my job is good enough to allow me to do this,  without taking my seniority away. I took the temp. disability because I literally could not remember my job duties. This is because my short-term memory is so messed up. I work with disabled children and thought it best to take the leave for their sakes as well as mine. It can be  high stress at times. I love and miss all my little ones and hope to return to my job in the fall.

They have aways said, You never know what a person has gone through until you experience it yourself. I so understand epilepsy now, and suffering seizures can cause. You never know when it will happen. For me, a bad headache can mean that my brain is bleeding. It can take my life in a minute or leave me paralyzed anywhere my brain chooses. Tho I am talking about the CCM in my brainstem here, a bleed in any of the other CCM’s, can be a stroke with stroke like disabilities. Say a prayer for me as I search for a new neurologist that knows about this disease.

Hugs to all,

Melessia

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On Tuesday, while staying at the with my Mother, I headed to the cafeteria for some lunch. As I was walking near the entrance, a big handsome man was coming out. When our eyes met, his eyes lit up and so did mine. I gave him a huge hug and we began to talk quickly.

I told him I was there with Mom and he ask where she was and that he would come by and see her. I told him I had my there at the LOLO (Our Lady Of The Lake Hospital in 2009. He then informed me that he was the head of Neurology and at the hospital. I told him that my stay with them was a very pleasant experience. I could tell he was in a hurry, so I let him go and went to get my lunch.

When I got back to Mom’s room, was already there. We talked bout our kids and how different they all are.I shared my most memorable moments with him as a child. His sister Lajuanda was my very best friend, so I too was like a little sister to him. That was about many many years ago.I told him that I remembered that he was the one who taught me how to tell time on a watch. He was very patient with me as I learned. These time lessons were usually held during our ride to church on Sunday, since I spent a lot of time with Lajuanda.

I reminded him of my second most memorable with him was the 16th birthday whipping he gave me. I told him that he hit me so hard on ” my one to grow on hit” so hard that it took my feet off the ground an into the air. It was a good thing he was holding on to me by one arm, or I don’t know where I would have landed. What great memories!

He just laughed, not remembering either of my memories.He said “so I have a living legacy with you. Yes, you do!

I am writing this to let you know, that no matter how old you have become, it is always a joy to see a childhood friend to lift the spirits. It was our first day at the hospital and we needed the ray of sunshine that Pete brought.

Thank you, my dear friend, Pete, for the part you played in making a little girl feel like a part of your family.


After dealing with disability insurance this morning, I decided to mop and wax my floors.

Completely exhausted after that, I went to lay down for a bit. Nine hours later I woke up feeling so sick I thought I was going to lose everything in my body. I wish I had because at least I would feel better.

I tried to eat some toast, but still felt awful. Next measure is taking the anti nausea meds, which at least took the edge off. My main problem is that I can never throw up to at least feel better. I just stay in that green state until things get better, however long it takes. UGH!!!!

All is not lost for the evening. I have enjoyed reading some sister blogs from others with CCM.

You don’t have to know someone to say a prayer for them. There are many who suffer with this CCM, as well as the complications some never think of. One to mention is, having no insurance to cover the cost of brain surgery, rehabilitation, maintenance care and medications for those with CCM.

Blessings!


So, I have been off of work for 6 weeks trying to deal with these new symptoms and the worsening of some old ones. The weeks passed by so fast and I’m still not sure what I should do.

I’ve been paying in for temporary disability for 3 years and have never used it. I didn’t even use it when I had my . Things have changed since the 1.2 cm in the pons of my  has leaked blood into my brain. It just changed the whole picture for me. If you don’t know already, the brainstem is considered the prime real estate of the brain. With that said, I decided to take 6 weeks and see if things got any better. Some have and some have not.

So I thought things were going along smoothly as far as paperwork for the temp. disability process. Wrong!!!! I get a call from the Dept. yesterday while I was still staying with my mom who has been in the hospital since Monday. The woman attacks me over the paperwork that was sent in to her. I told her I took the papers that were given to me, to my to have them filled out (which cost me $10. per page) and brought them back as I was told. She went on to say that the directions were very plain and didn’t I read them. I told her yes, but I have a and I can’t remember what the papers said without them being in front of me. She was so compassionate (ha) as she told me that she could not process the claim until I fixed the problem!

I had to leave my mom last night to come home and try to deal with this. Up at 5:00 a.m. to try to find the right papers on our employee website. I never did find the papers. When I spoke directly to my boss, she said that she gave me the exact papers that was sent to her by the insurance dept. She told me not to worry about it and she will find out what is going on. I was only allowed to take out temporary disability due to the pre-existing condition.

I have loved my job, working with handicap children for 6 years now. Who knew I would need help like I do now. I still say, one of the hardest things about this disease is, the fact that most of your handicaps cannot be seen. You can’t run around telling everyone you meet that you have had your skull sawed open, your brain cut into and that long after the hair grows back and the ugly wound heals you have been damaged in a way that is very hard to make a great comeback from. (sorry about the run on sentence)

I have some hard decisions to make in the days to come.  It is what it is, right?

Please, don’t get me wrong. I will never give up on the faith that I have for healing!

 

 

 

 

 

 

 


I am sorry for not writting in two weeks or so. It is very challenging when you are sleeping 75 percent of the time.

Right here and now I have been at the hospital with my mom since Monday. She is having and I need to be here with her. She is there for me in my times of need, even when I know she isn’t feeling well, so I want to be here for her.

I am having more problems lately with my legs and my from work is coming to a close. I go back to work on Monday, March 5. Tho I am excited about going back to work, I am so anxious about it as well. I like to do the very best I can in all things and this has a way of fooling you!

What I mean is, you think something is one way, then you find out it is another way.  You then become extremely anxious about doing anything. An example of this is conversations with someone who you have no memory of.

My husband came home from work the other day while I was cutting my moms hair in the bathroom. About 10 minutes later I got a text from my husband saying “come back here”.

I was puzzled and ask if Johnny had come home from work because I had not seen him come in. My mom said” Melessia, he came home a while ago when you were cutting my hair. He even came into the bathroom and joked with us about you cutting my hair. My heart sank, I did not even remember any of it!

Sure enough as I went to our bedroom, he was getting ready to take a nap before working an extra duty detail that night.

I guess it’s because things have worsened, I have become so paranoid, so I just stay at home as much as possible. This is not the way I want to live my life, so I pray, my family prays, my husband prays, my children pray, my friends pray and strangers pray.

For this I am so grateful! This disease affects so many others around you than just yourself. I have friends with the disease I can talk to, which helps so very much. I also have a husband who has stepped up to the plate during the last year to make my life less stressful. For all of this I am eternally grateful!


On Friday, Feb. 3, 2012, Johnny, Grace and I met with Connie and family members I had never met who have the same  as me. We had dinner and lots of time to discuss .

I found out that I have axon 2-10 deletion. I was glad to find out that I did not have to have  Genetic testing done to find out what degree of the disease I have.

I also have my paperwork filled out and mailed in to be included in any clinical trials that come up for CCM2. This will be very beneficial in treating and finding a cure for CCM, other than surgery. I’m happy to be a part of it all.

Connie has been working on this for over 10 years, since her daughter, Julia was diagnosed with CCM3. She has made great strides bringing awareness to this disease as well as making connections all over the world that concern awareness and seeking a cure.

Because of our meeting, I now have contacts with a leading expert neurosurgeon in  as well as the  who actually found the missing genes that cause CCM.

Now, I will be able to do news interviews with these experts, who can explain in a way that I cannot, everything about this disease.

Getting to meet my cousins was really awesome as well, especially my cousin Tina. We have so much in common and I felt like we have known each other for ever. As we sat on a bed in her home, we felt each others heads, where we had to have . We laughed because we both have lumpy heads all around the surgery sight. We were able to share things we have been through and made it through. Our stories were so similar I felt like I was not so alone in this. Tina has survived two . We are looking forward to getting together again soon.

Tina’s father, Jerry has done so much research in our ancestral bloodline and found that this disease goes back in our family for 100′s of years. I have ask his wife, Charlene to send me the information they have, so I can share it with you.


Friday night I will be having dinner with family members I have never met who have CCM. Joining us will be the Ambassador of Angioma Alliance, who was the first to start an Awareness Program for this disease about 10 years ago when her daughter was diagnosed with CCM.
I am so excited!


This morning I woke up to a backache. I realized also that I was having some trouble breathing as well. I couldn’t even get a good yawn out. I knew an Asthma attack was on the way.

I called my husband (Johnny) to let him know, because I have had really bad asthma attacks before I hate using my inhaler because when I do I can almost always count on the side effect of bronchitis hitting me in the next few days. Also using the inhaler gives me a terrible headache as well.

You see, CCM is just one thing I deal with, and sometimes I feel like my illnesses are playing tag with each other. When one is giving me a break, another decides to show up and give me a hard time. I become extremely frustrated and wonder how I am going to do all I dream to do, with all these monkies riding on my back (so to speak).

I remember a preacher telling me one time, that I had great tenacity as well as a simplicity about me. He said you will accomplish more than you could ever dream or imagine in your lifetime. Well, first of all, I had to go home and look up the word tenacity. It basically means stubborn. He was right about both. I am willing to fight for what I believe in, for what is right. I also like things nice and simple, without any drama. Drama is just waste of time, on the road to getting things done.

So what, I’m having a yuk morning, but my day is going to get better! Three of my Treasured Pearls(grandchildren) are coming to stay with me tonight. I am going to sing at The Downhome Cafe in Watson tonight. Two of my Aunts are coming for the first time. I will have fun getting out and being with fiends and family and my Pearls will have fun too!

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