My Daily Walk with CCM

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 CCM 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.

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 brain surgery. Things have changed since the 1.2 cm Cavernoma in the pons of my brainstem 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 Insurance 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 Doctors 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 brain disease 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 heart problems 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 leave of absence 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 disease 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 Disease as me. We had dinner and lots of time to discuss CCM.

I found out that I have CCM2 axon 2-10 deletion. I was glad to find out that I did not have to have DNA 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 Chicago as well as the Chief Scientific Officer 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 brain surgery. 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 surgeries. 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!