Saturday, May 30, 2009

I woke up this morning a little before 5 am because I was feeling very hot! As I was struggling to take the covers off of me I noticed that my left foot was hurting. It felt stiff, my first thought was spasticity. I started to massage it and it did help a bit but it still felt sorta stiff. I somehow managed to go back to sleep despite everything that was dancing around in my head. Last thing I need is for the spasticity to run up my leg! Arrgghhh!

Happy thoughts....happy thoughts!

Today is a beautiful day, I have a wonderful husband, my dogs make me smile (most of the time), I have an awesome family, wonderful friends, I am alive, I am breathing, I have a roof over my head, food, clothes, a car and last but not least I have Jesus in my life...it's already a good day!

Friday, May 29, 2009

Yay Lakers!!!

Whooo-hoooo! Lakers win the title of western conference champs! Yay! I love sports! They make me happy. It's amazing to me how talented and athletic they are it's awesome to watch and enjoy.


As for me well, I'm not doing as well as the Lakers are tonight but I am doing ok. After my last blog I injected myself and the next day I did ok, I didn't feel as bad as I did on Tuesday. I don't know if it was due to the Aleve I took prior to injecting myself but whatever it was I am grateful. I will take the Aleve tonight prior to my injection! :)

What's new for me is that I started to do weight watchers. I went with my friend Patti to a meeting and it was awesome! The topic was on motivation and how to maintain it and know when you need to get charged again. It was an awesome topic to start with. I wanted to do weight watchers with Patti because I know that weight watchers helps you learn about portion control, healthy eating and exercise. I like that it doesn't restrict any particular type of food but teaches you a lot on things that will be with you for the rest of your life not just for the next month or so. Today was my first day and I can't say that it was difficult, but it's gonna take some time to get used to. I feel good when know I am taking care of myself.

Next project: start getting my exercise in.
Although it's hard to get started when every inch of my body hurts or feels like its burning up, I have to start a work out regimen, not only to lose weight but to feel great and to give me more energy that God knows I need! (Thanks mom for the pep talk today I love you!)

Verse of the day by Exodus 23:25
You shall worship the Lord your God, and I will bless your bread and your water; and I will take sickness away from among you.

Wednesday, May 27, 2009

What a difference a day makes...

I started my full dose of Rebif on Monday night, pre-medicated and everything. Despite all my efforts tuesday was a really bad day. I woke up with pain all over, my legs felt like they weighed a ton each, my head hurt, I had a fever and sore throat. It did not matter what I did or took, it did not get any better; not until the evening anyways. My mom suggested I work out to give myself more energy but unfortunately I didn't even have any energy to get out of bed let alone to work out.

I got out of bed only because I had to. I had a follow up appointment with the NP. We went over how I still have numb feet, which the solumedrol and prednisone didn't fix, how I am very sensitive to heat now and I had her sign some disability form for the state so I can continue to receive money. I'm going to get my labs drawn on Monday to check my liver, thyroid and white blood cell count since Rebif can really mess those up.

Last night my left toesies were hurting as I was getting really bad spasticity. According to the national multiple sclerosis society:

Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.

How I feel it is like my toes are deformed and getting stuck in weird ways. Now they don't actually look different but I feel like they are stiff and they hurt. I have felt that today in my right toes as well. Although I have been feeling this spasticity, I still feel like its a great day! I don't have the flu like symptoms I had yesterday and my whole body doesn't hurt. It's a good day.

Tonight I have to inject myself again. I'm gonna take Aleve this time to pre-medicate instead of motrin. Hopefully it will help.

I noticed that today I feel more positive and wonder if it's because of the fact that I don't feel as bad or is it really the medicine. With MS itself there are more incidences of depression and to top it off Rebif can also give you depression as a side effect. So I have 2 strikes against me.

Don't know why I'm more positive today but what ever it is, I'm grateful for it. :)

Today is also World MS day. You can go to www.worldmsday.org to learn more about MS and learn how to help.

Monday, May 25, 2009

Sacrifice my body?


This weekend was my hubby's birthday. We had a BBQ and some of his family members came up to surprise him. We had a good time, I know that he was so happy so see his family. Saturday was the BBQ and unfortunately I wasn't feeling well at all. I felt sick, I had a 100 degree fever, which for me is really bad because my normal temperature is around 97 degrees so I was feeling the 100 degrees! I took tylenol and pushed through it though, I felt that if I stopped moving then I wouldn't be able to get up again. I didn't listen to my body, because if I had I would have missed the birthday and I just wanted it to be a wonderful day for Gio. I feel like I can't always listen to my body because if I would, I would be in bed all the time! What kind of life is that?!

Sunday I woke up with a HUGE migraine! Was it my body getting me back for not listening the day before? Don't know. All I know is that the pain was ridiculous! How is it that the head could hurt so bad? Sometimes I get so scared because in nursing school they always said that when a person has "the biggest headache of their life" they should go the the ER because it could be something bad, a bleed perhaps. Sometimes it sucks to know so much, you just start imagining the worst possible outcome! So there I was on Sunday laying in bed thinking of internal brain trauma while Gio and his family (minus his grandma) went out and had fun at a festival! It sucked! But there was no way I could have gone, with a each step I felt as if someone was shaking my brain violently and I didn't want to be a party pooper at the festival so I listened to my body and stayed in bed. The migraine didn't go away until this morning around 10 am!

I am torn.
What am I supposed to do? I wanna listen to my body, but I also want to live a full life. Not a half assed one. I hate having something or someone tell me I can't do something.
Even if it is my body.

Tonight I will start taking the full dose of Rebif. I just hope that I do well with it. I had a 100 degree fever as a side effect of half the dose....can't imagine what the full dose will do. Just gotta hope for the best and take the ibuprofen as directed by the NP. Tomorrow I have an appointment with her to follow up on how I feel after the solumedrol and prednisone. What sucks is that instead of only my left foot being numb now it's both feet! Thanks solumedrol and prednisone for not working and only making me feel like I had menopause! Insomnia, hot flashes and heart palpitations does not sound like a twenty-nine year old!

I just have to keep reminding myself "one day at a time....one day at a time..."

Wednesday, May 20, 2009

Tamia

I recently spoke to an old friend and had the unpleasant task of telling her I have MS. It had been a while since an incident like that, and I didn't know if I should at all. After the initial shock she seemed to understand and let me know of an artist who also has MS.
Tamia is an R&B singer and is married to Grant Hill. After my friend told me about her I went completely crazy trying to find out all I could about Tamia. She is a beautiful, wonderful singer who has 2 children. As I was reading articles about her something stood out that totally rocked my thinking. She said in an interview "it wasn't a death sentence". I sat there reading it over and over and it hit me that I had never thought of it that way. She also speaks of her pregnancies in other interviews and when I read it, it almost put me at ease. It's crazy to say that a person that I don't know has that much power with her words to put me at ease with one of the biggest life changing chapters in my future which will be pregnancy.

This is what she said in an interview with "Young, black and fabulous" when asked if she was worried because of her MS to get pregnant the first time and a second time:

Tamia:The first time I wasn’t diagnosed yet so I had no idea. I was diagnosed a year after Myla was born. I didn’t know anything about MS–just about Montel and Richard Pryor. No one in my family has it. I meet so many people when I’m out on tour–mainly younger black women–who have MS. It’s really interesting. I wasn’t really nervous because with MS, when a woman is pregnant, all her symptoms of MS subside. So it’s good to be pregnant. But you have to be careful because after you give birth, there’s a higher rate of attacks. So to answer your question, no, I wasn’t worried since I knew being pregnant was totally safe.


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This is another interview with Extra TV where Tamia and Grant Hill talk about MS

Tamia and Grant Hill Fight MS
May 27, 2005
She's the sultry singer and he's the sexy basketball superstar who has made millions on endorsements. Together, Grant Hill and wife, Tamia, have lived a dream life -- until their world was ripped apart by multiple sclerosis.

And now for the first time since Tamia’s devastating diagnosis nearly two years ago, the couple has found the courage to speak out, and they’re talking only to "Extra."

"I mean literally, I went from being physically active to not being able to get out of bed," Tamia recalled. "I cried for maybe 20 or 25 minutes."

"It took time for her, for both of us, for everyone involved, to accept it," Grant added.

Tamia, who is 30, joins other celebrities like Richard Pryor, Teri Garr, Annette Funicello and Montel Williams in taking their struggles public to help raise awareness for the National MS Society and the crippling disease that attacks the nervous system.

"I just felt it was important to get it out there and let people know it's not a sign of weakness," Tamia said. "You have good days and bad days."

But the Hills aren't letting MS slow them down. Grant's still a premiere player in the NBA, whose main goal now is helping his wife manage MS through medication, diet and exercise. And remarkably, Tamia is raising a 3-year-old daughter and still touring and recording new material!

"It wasn’t a death sentence," Tamia insisted.

"She's a great mother, she's active, she's entertaining," Grant said. "Hopefully she can be encouraging and inspiring to others."

"We're just pushing forward and hoping that in the next ten years there will be a cure," Tamia added.




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Lael Rose, Myla Grace, Tamia and Grant Hill

Tuesday, May 19, 2009

Party pooper

My brother and cousin are here visiting me and I'm having a blast, laughing until I cry. As much fun as I'm having I wish I could do more with them. Yesterday they went golfing and I wanted to go but I was too tired (what a party pooper!). We did go bowling afterwards and I had a really good time. The numbness was still present in my feet but I played through it. I had to.
Today I feel tired. My feet are still numb, my right trochanter hurts and my head is hurting a bit. Suddenly as I was typing this I felt pressure coming over my head, like if I need to yawn to pop my ears. It's really weird. Can't shake that feeling.

I'm glad that it isn't so hot now. This past weekend was so hot that I could not function. It was weird because I had never felt that way. I felt like if I was hung over. I was tired, slow to think, act, respond, numbness took over my feet and I just could not wait for it to be over. We put the AC on in our room to help me out and it really did make me feel so much better. I looked online and I might even be able to put it as a tax deduction if I get a prescription for it from my doctor.

Yay! I hope it's true.

Saturday, May 16, 2009

Heels!!!!

Last night Gio and I went to our friends wedding. I was very apprehensive about going only for the the silly little fact that I had to wear heels. I haven't worn heels in a while due to the imbalance I have at times and was scared about it and I wasn't going to go in flats! That's just not me! So I sucked it up, put on the heels and went to the wedding!

The heels in question:


The night went uneventful, occasionally I held on to Gio for support, I'm sure it looked like if I was getting tipsy. Oh well, I decided to make the best of it. I even danced a bit! yay! Not my best moves, but I was keeping up. I even saw some people that I work with that I haven't seen in a while due to me being on disability and of course heard the usual "oh but you look so good!". Gosh people just don't get MS at all!

Last night was fun, but today is another story. I'm so unbelievably tired! My toes are numb, my right ones more than they had been yesterday. Today with any little activity I become exhausted! I wouldn't change a thing though. I had fun yesterday. At church pastor Dave is talking about living like we only have 30 days to live and I feel like last night I did it.




Thursday, May 14, 2009

Montel Williams: inspiration of the day!





I bought this book not too long ago and I feel like I just skimmed it instead of actually paying close attention to it. I will start reading it asap. Montel motivates me like no other, I love his direct approach to everything and how he takes control of his life and health despite the struggles.

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I am so motivated and excited for all the things I am currently doing to help myself in my journey. I have started to exercise (yay! finally) I'm eating healthy, taking my MS medications and 4life supplements and I am feeling empowered! Today is definitely a good day!

Philippians 4:13 (New International Version)I can do everything through him who gives me strength.

Monday, May 11, 2009

More steroids?!

Went to go see the Nurse practitioner today because of the numbness to my feet, my left leg and to fill out more paperwork in order to stay on disability. She conducted some simple test and told me that she feels that I need more steroids because of how extensive numbness has become. She wondered why I waited to go see her and I simply told her that I thought that it would resolve like it has in the past (don't know if she liked that).

So for the next 3 days I will be drinking 1 gram of solumedrol in juice. For those that don't know, that is a HUGE dose! I'm supposed to put it in juice and drink up. It's so bitter, it's so horrible! I need a chaser of more juice just to stop my gagging reflex.


This is when I put the solumedrol in the juice:


After the solumedrol I'm gonna start taking prednisone and I will taper it day by day. Along with the steroids I'm gonna take pepcid to protect my stomach.
Oh yea and she also gave me a prescription for a sleep aid because steroids can get you jittery and sometimes give you insomnia. The last time I took it I didn't have any of those symptoms but I still got the prescription anyways just in case. :)
Here's arsenal against MS (for now):


Along with the medicines and supplements (4life products) I am armed with positive thinking, prayer and lots of laugher (thanks to my husband Gio). I was researching online and on a blog by Dr. B. Saks he says that our thoughts affect us so much because:

The reason is because internal thoughts create chemical changes in the body, each and every second. A person who lives in happiness and appreciation; with a positive, optimistic outlook on life, despite its challenges will enjoy a stronger and healthier body than someone who is negative, dark and pessimistic. Even the simplest of words that we use with ourselves and with one another mean so much as they can evoke a positive or negative chemical change instantly in our bodies. For example, a simple compliment given to a co-worker, “you look very nice today Sally” can positively change both your chemistry as well as that of the person getting the compliment for several hours. It feels good to give, and receive! Unfortunately, the opposite is also true: “I look fat in these pants” will negatively impact your body and will reinforce the negative aspect(s) you really want to change. Instead, think and act positively and if something is not the way you want it to be, then take the action necessary to improve or correct it.

To read more go to http://www.wellness.com/blogs/drbsaks/507/where-the-mind-goes-the-body-follows/drbsaks

On a last note I leave you with this wonderful poem...enjoy!

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Monday, May 4, 2009

Patient heal thyself

So I started to read "Patient heal thyself" by Jordan Rubin and so far I have connected with a lot of what he wrote.Photobucket
In one page he wrote that he was feeling so horrible that "I wanted to get better. I wanted to end the pain. So I was willing to try anything and everything." I feel a lot like him so I'm gonna share with you my daily pill regimen:

Not shown is the rio vida I take twice a day and Re-zoom which a liquid which is supposed to help you with energy among other things.
Sometimes I feel like despite all that I am taking I still feel the same. I guess I just want instant gratification, I mean who knows what the medicines and vitamins are doing to my body on the inside.
Today is a better day for me, I feel much more positive like I can beat this. Another quote from "Patient heal thyself" in regards to how his health was renewed : "Much like the story of Job in the Bible, the Lord had restored what was taken away and multiplied it more than I could have ever imagined".
I can't wait until this happens to me!

Sunday, May 3, 2009

Blessed

This weekend hasn't been my best. I started taking the rebif injections and have gotten the "flu-like" symptoms they describe as possible side effects. Yesterday has been by far the worst. My body was hurting, my throat was hurting and I was feeling feverish. My friend Patti called me and told me she wanted me to visit her and her new baby. As much as I love them I wasn't feeling well at all and at first said no, then I changed my mind and thought that it could do me some good.
I went and at first felt ok and started taking pictures of the baby with a camera that her friend let her borrow. It was a dream come true except that it wasn't my camera so I was scared of breaking it! Anybody that knows me knows how I love photography.


It was fun but then I started feeling worse.

Today I kinda feel the same with an added bonus of pain. Yep, I'm hurting yet again. I can have my legs still and as I stay there quietly and not moving I can feel the pain moving up and down my right buttocks to my leg and back up again. It's really is very frustrating. I start to remember how my life was just one year ago and how things were better and I wonder how I got to this dark place full of pain and uncertainty. MS is a horrible disease that keeps you guessing every minute of every day wondering if what you are feeling at that moment is due to MS or if it's something else.

It's been said that the number one reason why people with MS die is because of suicide. I'm not suicidal or anything like that but I can understand why they would do it. It's hard to live day to day not knowing what MS will throw your way. Depression is also up on the list of things that MS suffers go through and I can't say that I've never felt depressed but I thank God for pulling me out when I feel trapped in a dark pit.

I have my down days when I feel horrible and then just want to stay in bed, but I'm thankful I have the most wonderful family God could have given me.
My mother is so strong and relentless I don't know where I would be without her.My sister is so kind and thoughtful and makes me feel so loved. My brother is so strong and funny and although he is my youngest brother I feel like he can protect me from anything. My friends are wonderful too and at this moment I don't know where I would be without Patti. She uplifts me and helps me forget all the negative things. The best gift that she could have given me right now is letting me be a part her sons' life. He reminds me of how great God is.

Last but not least, my wonderful husband. He is everything that I need and ever wanted. He is so great I can't even start to say everything that he has done for me and how happy he makes me.

I am so blessed!