Welcoming an old person smell.....

So I went to the doctors October 1. I had to call in the morning to make an appointment, I wasn't able to get an appointment with my primary care doctor but luckily I go an appointment with Dr. Synder. A wonderful man who also works with high schools and college football team with injuries. What a blessing it was to have gotten an appointment with him instead of my regular doctor. He spent about 30 minutes with me and my husband answering questions and assessing me. Turns out my left ankle that had been bothering me was because I tore a ligament months back and since it didn't heal correctly, it was easily re-injured. The pain I had (have) in my right hip turns out to be tendinitis! But not just my right hip, my left hip as well. They are both very tender to touch and painful especially after walking so much. So I will be starting to work on "modified" duty for the next 2 weeks. Who knows what I will be doing but at least I will be working! Dr. Synder asked me if I wanted to be on disability but I knew it wouldn't be for long and it just seemed like more of a hassle to go through.

As of the first of October I have been diligently doing what Dr. Synder told me to do for my hips.

1. Ice my hips at night for 10 minutes



2. Then put on pain relieving topical cream (of my choosing)
Our bedroom then smells like an old couple lives there, not very sexy ;)


To tell you the truth, I don't know if its' working but the doctor told me to be patient and it will help, so I am following doctors orders.

Quick question: earlier today as I was preparing breakfast, I started to feel like if I was only breathing shallow, like I couldn't get a deep breathe. I still feel like this and I don't know what it is. I've heard of an MS hug but I don't know if that's what it is. Just wondering if anyone has felt anything like this before.
It's funny is sounds like and MS hug would be something good, sweet even....they should change the name to something else!

God Bless

Just wondering....

So a couple of months ago I sprained my left ankle and within a week or so it healed and stopped hurting. Last Wednesday it started to hurt again, I don't remember re-injuring it but here I am in pain. I went to work on Sunday sprained ankle and all and by the end of the day (my 12 hr day) I was in pain not only in my ankle but also my right hip (trochanter). I have had pain in my right trochanter earlier this year and was attributed to brusitis (probably due to the MS). By the end of the day I felt like I couldn't put pressure on my right leg either because of that pain. Ever since Sunday I've had pain to my ankle and today low and behold a new pain arose. My right knee is really hurting now, so much that when I put pressure on my right leg only, I feel like my knee might give way.
So my question is this: does anybody else have any kind of joint pains and has anybody found out if MS has anything to do with it?
I am really curious to find out. Please comment me back. I will start to research this and see what I find out.
God Bless everyone!!!!

Oops I forgot....

So in the beginning of August my husband and I went camping at the lake again, this would be our 3rd year in a row. We were wondering how I would do this year since I have become more sensitive to the heat and it gets really hot out there! Sometimes in the triple digits! We wanted to rent an RV and the plan was that if I started to feel bad due to the weather that I would go in the RV and chill out. We ended up not renting it and just took my car, I guessed I could use my cars AC as good as the RV's. But I am happy to report that I didn't need to do that and I did great! I had a really fun time!

Hello! I've been a stranger!

Wow! It's been a long time since I blogged and to tell you the truth I don't know why. Don't have any concrete answers...just didn't. But here I am now. So to update you all: I've been working my normal hours and trying to add on more days since money is tight right now. I've been doing ok but I come home exhausted on really busy days and really tired on slow days. I remember that before if I had a slow day I came home and still had lots of energy, so much energy that I could still go out and dance! Gosh I wish those days were back! I can't even think of doing that now! Is it my increasing age or MS? Maybe a little of both!

One of these days after an incredibly exhausting day at work I couldn't help but cry in the car as I drove home. I was so tired and my body hurt so much that I felt a bit frustrated and all I could do is cry and pray all the way home. I came home to a romantic candlelit dinner that my husband worked hard at and I just couldn't get myself to sit in the dinning table. He served me dinner in bed! The next day I stayed in bed for half of the day to let my body recover!

I've been wanting to get another job at another hospital, John Muir to be exact. It's such an awesome hospital, so many people have nothing but great things to say about it and they have money! People that work in hospitals understand that where there is money there is help and I need it when it comes to work. Where I work right now we don't have any nursing assistants so sometimes half of my day has to be dedicated to things that nursing assistants could do if I worked at a hospital that employed them. I've been applying and praying that they call me and today at church the pastor was saying that if we are gonna pray we need to pray specifically and not to generalize. It's funny that this was todays topic because I know the name of the manager of the telemetry unit at John Muir and I've been praying for him and so that he will call me and tell me he wants to give me a job. :)

Other than work, nothing much has been going on. I am excited though because my husband and I will be celebrating our 1 year anniversary in 2 weeks! Time sure flies by! My friends' baby that I have talked about before will be 5 months this month!

I hope you all are doing well!
God Bless!

P.S. A special shout out to my uncle who has been asking when I was going to blog again. You know who you are. :)
I love you uncle!

Update!

It's been a while since I blogged and I figured since I woke up at 3:30am I should do something productive.
I have been feeling awesome!
Don't know what I can attribute it to: eating a balanced diet, working out, prayers (not just mine, but a lot of peoples) positive thinking, 4life products, I don't know.
Maybe everything!
But to be frank, I don't care! I'm just so happy that I haven't had any spasticity, numbness, pain, or any other weird MS symptoms that only other people with MS can understand.
The only thing I do struggle with a bit is fatigue, not much, but it rears its ugly head every once in a while.
But it's ok!
I'll take that over anything else that I was feeling before.
I continue to take the Rebif, I continue to take the 4life products.
I spoke to my mom and told her how great I was feeling and she said that it typically takes people 3-4 months to start feeling the effect of the 4life products. I first started in March, so I'm right on track. :)
I thank God every day for the people He has put in my life that help me be a better person physically,mentally and spiritually.
I know He is behind all of this.


My hubby and I celebrating the Lakers winning the NBA championship and my doggy trying to figure out what we are doing.

Confused....(sigh)

I went back to work last Tuesday. I didn't feel 100% but then again I have come to an understanding that I might never feel 100% and that I have to face reality and go back to work. Work was tough. That hospital is just crazy. I came home after 12 hours of grueling work and was in pain, mentally and physically. After showering I laid in bed to relax and I just couldn't help but cry. Cried because I was hurting so bad and because I just don't like work right now. I don't want to do it just for a pay check but as of now it seems like that is what I have to do until I find something better for me.

As it turns out I wasn't only in pain because of a hard day at work, but also because I caught a bug! Yuck! My throat was hurting so bad, my body was hurting so bad, coughing...the works. One day of work and I get sick! That is so not good for me. I work at a hospital! As a nurse!! I can't get sick every time I work! That's just ridiculous! Today was the first day I felt better, physically at least. I have thought so much about what to do for another job, what would I love to do? Better yet what will I be able to do without being totally exhausted after a days work? I searched for jobs yesterday and I applied for one as a case management consultant. Not quite sure what that is, but sounded interesting enough.

Mentally I am so tired right now. I'm just thinking over and over about my future and what I am to do with my life. I'm such a planning type of person. I need to know everything, need to be in control. I know it's ridiculous. I know it's not good for me, but it's so hard to live day by day, or hour by hour without being in control. I know I have to turn over what control I think I have and just give it all to Jesus. I know it in my head but it's hard to do it. I praying for it.

I'm having such a hard time getting it through my head that I have a job that I don't like. I have always wanted to wake up and be excited about work. Is that such a crazy idea? I'm just confused about so many things right now that it's tiring. I can't stop thinking about it either.

I started reading a book that I bought a while back. I hope it helps me. Seems like it's a perfect book for me to read right now. I feel like I'm not living up to my potential each day, I just seem to float by. I want a change, I hope this book helps. :)

Work

Went to the doctor yesterday for a follow up since my disability is ending on Monday.
She asked me how I felt and I said I was fine, she asked me if I needed any restrictions and I said no.
Maybe I should have responded a little different, maybe I should have been very honest with her and tell her that I'm not happy with going back to work because I really don't know how my body will respond.
I would very much like to stay on disability to shield myself from all the stress of work, but I have to come to a realization that I cannot live in a bubble.
I cannot hide from life, I have to embrace the good and the bad. I want an exciting life: I want to travel and see the beauty of our world and I can't do all that when I enclose myself in the walls of my home.
It's do or die.
Better yet "do" or "just dream".
I don't want to "just dream" I want to "do".

So on Tuesday it's time for me to go work. I pray that everything goes as smoothly as things in a hospital can go. :)

Few things I want to do:




Leaning Tower of Pisa in Tuscany, Italy




Greece!

Mourning

I sometimes mourn the woman I used to be.
I think about how carefree she used to be, how she could go out dancing on a Friday night and the only thing she would have to worry about the next day is how much her feet would hurt because of the heels.
I remember how she basically could eat whatever she wanted, whenever she wasn't on a diet.
I remember how she loved her job and looked forward to it every day.
I remember she used to dream about how her future husband and children would be and how she wanted so badly to be a mother with only the "usual" apprehension. Would she be a good mother? Would she know what to do?
I remember she used to try and rush through things sometimes wanting to live in the future while she was in the present.

I'm a totally different person now.
I think about everything I do in great details. Will it get me too tired? Is there a bathroom around?
I think about the food I eat, not only to lose weight but also to nourish my body.
I don't love my job as much as I did, and in part I know it's because I don't let it define me now. It's just not as important anymore.
I now know how my husband looks, not my children yet. I still do want to be a mother but along with the "usual" apprehension of being a good mother, I have more worries. Will I have enough energy? Will I be a burden on my husband when I don't feel well?
I now sit and enjoy the small things I experience each day. The laughs Gio and I share for the silliest thing, the wind howling through the trees, the blue sky, the smell of our roses in the front yard, the differences in our dogs attitude and how they make us laugh.

Is that why people say that this disease has done more for them than what it has taken from them? I used to be so perplexed by it. How can somebody say they have enjoyed what MS has done for them?
Maybe this is it. It slows you down. It puts things in perspective. Nothing is as important as how you feel, and not just physically but emotionally and mentally.
It forces you to enjoy everything. The mishaps in life aren't as big as they once were. When you are dealing with a bigger entity that is MS, not having the coolest car on the block takes a back seat. Actually a lot of things start to ride on that back seat of life.
You start to love every little thing.
Without sounding too morbid, you start to live in the moment because you just don't know how long you will feel as good as you feel right now.
And I guess that's ok, because then I won't have any regrets with what I do with every day that God gives me.

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!

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.

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.

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..."

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.




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.





Lael Rose, Myla Grace, Tamia and Grant Hill

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.

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.

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.



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.

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!

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.
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!

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!

Started Rebif

On Monday I received the rebif shipment and I started injecting myself that night. I didn't even wait for the NP to call me or for any other person to show me how to do it, I've been waiting for so long and I already knew how to do it anyways. The major side effects I could have because of the medicine is "flu like" symptoms. The next afternoon I started feeling feverish with body aches and sore throat. I guess the symptoms were minor though, or maybe it was because my mind is on other better things. My friend Patti had a baby and all the focus has been on him, which is very good for me. That little guy is helping me out in ways that he might never understand, just being around him I forget all about how crappy I'm feeling. It's awesome!

My current symptoms are mainly the numbness to my left leg and back, I tend to get tired easily but I don't know if it's because of the MS or because of the "flu like" symptoms.

Although I was feeling tired today I did a workout video today that Patti let me borrow and now that I'm done with it I feel better because I'm doing something good for me!



Here are pics of Monday nights' injection, excuse my PJ's it was bed time! :)
(my schedule will be Monday, Wednesday, Friday)



Reading how to load the rebif into the injector


Injecting myself, it wasn't so bad after the initial poke, the medicine doesn't burn.


Everything went a-ok! The doggies came right to me when the injector made a noise when the medicine went in. They are there to protect me! :)

Monday is I day!

I spoke to a rep from where my Rebif is coming from, a place called prescription solutions. Turns out that the rebif will finally be arriving at my house on Monday!
Arrgghhh!
Monday it is.
Monday is officially "I day" or injection day.
I have mixed feelings about this whole ordeal. I'm excited because I need to start taking it asap especially because of my current symptoms, but I'm also dreading it. I can't be too excited about starting to inject myself or about the possible side effects. They say that the side effects are "flu like" symptoms. Great! :(
It just sucks.
Something else that sucks? Lakers lost today! I swear they give me palpitations when they play the way they did today!
So now I'm off to sleep, although it seems my left foot beat me to it.

Not again

It started 2 days ago, I started to feel something different going on with my left leg. Couldn't quite put my finger on what it was, I knew the sensation was different for sure. Yesterday whenever anything would touch my leg it would hurt so much! Today my leg feels sorta numb. It's so hard to describe it because I can still feel, but the sensations I feel are different. Today my waist on the left side is also feeling "weird". The best I could describe that is like I'm sunburned there and whenever anything touches it it hurts! It's pretty weird because about 2 days ago I started to finish off some of my 4life supplements and actually today I didn't drink anything except my riovida (a liquid drink with transfer factors). There seems to be a strong correlation in the lack of medicine to my symptoms. I'm not positive but there seems to be something there.

Today Gio and I went to a baseball game. It was the Giants vs. the Padres. I woke up not feeling too well, in fact I still had the same headache from the day before. I knew that Gio really wanted to go (it was free!) so I tried to put on my happy face and went. He said that we could come home if it got worse. I don't want my pain or any symptoms to interfere with my life, in fact this past weekend our pastor was talking about what we would do if we only had 30 days to live. What would we do different each day. Well I for one don't want to let any opportunities pass me by, even if it is to go watch a baseball game with teams I don't even care for! I never had gone to AT&T park and now I can say that I have. Throughout the time at the game I was feeling better, then again I didn't want to focus on the pain. The scary part came when Gio and I had to go to the restrooms and we had to go down a flight of steep steps. I held on the rail like an old lady,not necessarily because I felt like I was going to fall, but you see, I have to think of these things ahead of time. Since my left leg isn't feeling "normal" I have to protect myself against any harm.

You are supposed to do something that you love everyday. I heard this from somewhere, can't really remember from where. Since I love photography I take photographs everyday, whether it be of a building, a flower, a tree, a lady bug or my favorite subjects: Gio, Pogo and Lola. I will share some with you.

my babies:


Driving in San Francisco:



AT&T Park:

Going to the dogs...

Not feeling well enough to go back to work, my doctor and I decided to extend my disability a couple more weeks. Having to go through all the paper work sucks so bad though! Almost makes you want to go to work regardless of the symptoms. Why do hospitals and doctors offices make it so difficult sometimes, it can get so frustrating!

I decided to look up the meaning of disability in my favorite dictionary (dictionary.com) and this is what disability means :

1. lack of adequate power, strength, or physical or mental ability; incapacity.
2. a physical or mental handicap, esp. one that prevents a person from living a full, normal life or from holding a gainful job.

Wow! Talk about bringing you down to reality. Harsh words dictionary.com! It's so hard not to get consumed in the meaning of the word when I am living it right now, but I am determined not to. I try to be optimistic and happy and squeeze the happiness out of everyday. My dogs are a life saver right now. They make me laugh and focus on something else besides the pain. Lola, my new puppy is so cute, sassy, fiesty, funny and adorable. She makes me laugh with all her antics and her discoveries courtesy of our back yard.

It was hard at first having both her and Pogo, our dog of 2 years, because they used to fight and be so jealous of any affections the other would get, but they are getting used to each other and have become best friends. Didn't take long though because exactly 1 week today Lola came into our family. Lola has helped Pogo act like a younger pup and play a lot more. I love it!

My day...

Woke up with the pain to my right trochanter being really bad. I'd say about a 6/10 on the pain scale. Was able to walk ok, but it wasn't fun at all. In addition to the pain, I felt tired & cranky. Gio and I ran some errands and came across a farmers market in our city so we stopped by. It was fun to see everyone trying to sell products with the g-force winds we were having here. We then went to a book store I have been wanting to go for a long time and I found 2 books that I was gonna buy at barnes and noble but I found them for $7.00 each!!! I was in book heaven!!!!
I currently reading "Living Well Emotionally, break through to a life of happiness" by Montel Williams.
I bought: "Boosting Immunity, creating wellness naturally" by Len Saputo, and Nancy Faass (funny last names)
"Patient heal thyself" by Jordan S. Rubin
Happy reading to me!

Oh yea then we had a freak hail storm up here! It came in this order: rough winds, dark clouds, slight rain, huge hail! Gio and I had fun being in our back yard while it hailed down on us. We acted like kids. We had fun. That's all that matters!

Easter weekend/My "gift" from fed ex

This weekend was awesome. Not only because it was easter weekend but because I got to spend it with my family (minus my brother, who I miss terribly). It was awesome to interact with my sister, mom and aunt. We had the best time and we didn't even do the regular sightseeing, we stayed home, cooked, laughed and played. Saturday night I had a mini melt down that only Gio got to witness. Somehow it came to my attention of something that my mom did and is doing to help me with my journey with MS. I don't know if I have mentioned it before but my mom introduced me to a product named 4life. It actually presented itself to her out of a prayer, my mom really believes that it is a God given product for us. I started taking it not on my understanding and faith for the product but because my mom truly believed in it and I believe in her. I have felt good, but due to the unstable nature of MS I don't know if its the product or just my body. (more about 4life products later).
My mom has been suppling me with the products for almost a month now, and I know that it has been hard for her to buy these products but I never grasped just how much she loves me. My mom has told me in the past that if she had to die in order to heal me she would, and now without a doubt in my mind in order I know she would do it. It's hard to grasp that idea. I have always known she loves us, her children, but I could have never thought or felt that it was this much. I know that people usually say that it's because I don't have children of my own, but I think I understand it now (at least a small part). I lost it as I was trying to explain it to Gio. The next day was Easter service at our church and our pastor held the service in a way that I had never experienced before. The feeling that I had the previous night resurfaced when our pastor told the story of how Jesus died for our sins so we could essentially be healed, happy, blessed and have eternal life. I lost it again. Jesus died for everyone good or bad. It was such a enlightening realization. I have known this for a while, but given what I had just experience with my mom the previous day I think that it just seemed to slap me in the face and made me realize once again how much Jesus loves us. It was a great easter.

Today I got a surprise delivery from the Fed Ex guy. It was actually the supplies for Rebif. It's so funny, it came with a "welcome" kit and the injector that I will use to give my self the shots. Welcome? Welcome to what?! Stabbing yourself 3 times a week and possibly getting horrible side effects?! Arrgghh!!! It just sucks! I'm not at all excited to start this medicine but I know that it will help me out right now. Gotta think positive...gotta think positive....

I told you so!

I'm reading a book titled "The MS recovery diet take control of your health, change what you eat, and live symptom-free". I was reading lots of success stories last night and was intrigued by it but really didn't think of putting what I learned into action until now. In the book it hypothesize that the 5 major triggers that can set off MS are dairy, grains containing glutens, legumes, eggs, and yeast. My morning breakfast today included eggs (trigger ?), canadian bacon, and 1 piece of wheat toast (trigger ?) with coffee. Didn't think much of it, enjoyed my breakfast very much. Later while sitting on the couch watching TV i noticed that my legs were hurting and feeling so heavy. I just assumed that I woke up like that (which has happened before). Not until a few minutes ago I started thinking about what I read about last night and wondered if something triggered the symptoms I was currently feeling. This morning I did not wake up with my legs feeling like that. My back was still hurting but it's been hurting for a while now. So now I'm totally interested. I'm gonna start writing everything I eat and how I feel later, hopefully it gives me and insight to what triggers my symptoms. By the way, my mom has told me in the past about watching my gluten intake because she heard that it might be related to MS, did I listen? That is a big fat no. If she reads this I know what she will say: "i told you so!". I love my mommy!
I called my neurologist office because I still haven't gotten the results of my x-rays that I took last week. (FYI for those who haven't read my previous entries, I already know the answer because I have connections at that hospital, but I'm still waiting for what my doctor has to say.) They went back and forth and I received multiple calls: "we don't have the results yet","once we get them we will call you", "oh we have the results back but your doctor has to call you and let you know" and so on and so on. Still waiting...ah the joys of our medical industry.
:)

To Rebif or not to Rebif?

Date: April 6, 2009

Went for my appointment with Lynn the NP. We talked about my options for medications and we decided on rebif. It's an interferon the will have to be injected 3 times a week. I'm not too excited about it but I know that its the best decision for me at this time. They will get everything set up with my insurance and they will call me back when they have any information for me. We also discussed how Gio and I have to really protect ourselves against pregnancy now because if I were to become pregnant while on rebif I have a very big change of having a spontaneous abortion. It's so hard to think that something like that could happen to us, makes me sad to put myself in that position. We just have to be careful and leave it in Gods' hands. I don't need more things to stress out about.
I did yoga this morning, but was in pain the whole time. My lower back seems to be hurting so bad at all times, especially when exercising. Lynn thinks it may be spasticity to my lower back. Yesterday while helping Gio clean out the garage, i was crouching down doing something and when I stood up and looked at Gio I thought I was going to pass out, I saw black spots all around and so I immediately grabbed on to something to stop me from falling. I asked Lynn about it and she said that MS doesn't affect blood pressure or blood circulation but that since I was in a crouching position and then stood up that since I have spasticity to my lower back it could have been harder for the blood to circulate back to my head and thus making me feel faint.
Lesson of the day: directly or indirectly MS affects everything.

Inside & out

Taken from journal
Date: March 27, 2009

So I went to see Dr. Wrubel on Thursday because of my right hip/trochanter pain and back pain. We also spoke about starting on MS medications because I now feel that I need to hit this disease from every angle possible: medication, diet, exercise, lifestyle and spiritual. He ordered some xrays which I got done immediately at DMC (thanks to my wonderful friends there).


I got my report back yesterday and it said that I have "mild dextroscoliosis". What?! Confused me a bit, but I googled it (anyone who knows me, know that I google everything) and found out that dextro means right and well scoliosis means curvature of spine. From what I found out from the internet this could also be because of MS along with congenital, trauma or other reasons. For treatments they suggest physical therapy, back brace, lose weight and strengthening of the back. It also said that when severe a person might need surgery! Wow! Something else to think about! Great!

Juicing!

Date: March 2, 2009

So I'm trying everything that I know and that people tell me to try and combat this horrible disease. From diets, to cleansing my toxic body to juicing. My mommy bought me an awesome to juicer to make awesome juice...but turned out the juice wasn't that awesome. Don't know if it's due to my juicing recipe or the amount of juice I made but whatever it was, it took everything in me to drink it. I have such a supportive husband that he even drank some! :)

Adventures in acupuncture

Taken from journal
Date: February 26, 2009

So yesterday I went to see my doctor because my hip and leg have still been hurting. I told her I thought that I had brusitis due to the pain in my right trochanter. She concurred with me and was excited because she said that brusitis is better treatable then sciatica which is what we first thought my pain was. I received a lovely shot of lidocaine and a steroid to my right trochanter.
I then went to my appointment with the acupuncturist.


I wasn't so bad. She put a lot of needles in my hands, legs, feet, back and even one in my head! After she put the needles I had to lay there for 20-30 minutes without moving. I first thought that would be a very hard task but I ended up taking a wonderful nap. I felt good afterwards, I had better range of motion to my right leg; whether it was the injection to my right trochanter or the acupuncture I don't know and frankly don't care all I cared was that it felt better.

Disability

Taken from journal
Date: November 18, 2008

So I was put on disability since friday. Lynn the nurse practitioner did some simple tests on me for strength and i failed really bad. My hands are still numb and my feeling isn't very good. My handwriting seem much better though. :)

Not better

Taken from journal
Date: November 11, 2008

Yesterday was a pretty horrible day. One of my worst. I work up with a migraine, the whole day I was very nauseated and couldn't keep anything down. Today was a bit better-didn't feel so nauseated but I did feel very tired. I was trying to change so we could go out and shop for groceries but didn't even finished because I got so tired! Since last night my back and my neck feel like I have a sunburn. I've felt this before and hate that it's back! My hands are still stiff and writing is very awkward. I was definitely in a fog today and at times I felt like I was going to fall asleep instantly. I pray to God that tomorrow is a better day, I will call call Dr. Wrubel because I honestly don't think I can go back to work yet...we will see.

2nd IV infusion

Taken from journal
Date: November 7, 2008

Went for my second IV infusion and it went well, no major side effects besides the IV stick and the nasty metallic taste. I'm supposed to take my 3rd dose by mouth tomorrow, Lynn the nurse practitioner gave me the instructions. Gio took some good pictures this time!





Nice juicy vein! (Only nurses will understand how exciting this is!)

First IV infusion

Taken from journal
Date: November 6,2008

I've been so introverted lately having to deal with everything inside of me, physical, mental, spiritual. I went to go see Dr. Wrubel today and I received my first solumedrol IV infusion. They recommended it because of all my current symptoms: the numbness, spasticity, jumbled thinking, feeling "drunk". I get so confused with all these things, I want to go as natural as possible but then at the same time I feel like I need to also do come conventional treatments as well.
The infusion wasn't so bad, except for the metallic taste in my mouth while I was getting the infusion. It was horrible!






Trying anything to get the nasty taste out of my mouth!