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!

Numb

Taken from my journal
Date: October 31,2008

The daze you first feel when you are in transition from sleeping to waking is awesome. You're not quite sure of everything but yet it all feels o.k. This morning I woke up and felt great but only a few seconds later my body quickly reminded me that I am not great. My body is numb and almost feels foreign, like when I walk I am not sure it's my body walking. Everything feels different. Stayed at home with Gio today, didn't want to go out, I feel like other can see how awkward I feel right now.

Problems with my left eye again....

The date: April 2008

I had been getting a lot of dental work done...I guess too much work done. One night watching TV with Gio I started noticing that my vision in my left eye wasn't the same. I put my hand over my left eye and everything looked perfect through my right eye; then I put my hand over my right eye and my vision through my left eye was horrible. The best I could describe it is felt like I had to fix the picture on the TV, like back in the days when you had to fix the "bunny ears" on the antenna to fix the picture. 

The next day I had to go to work with partial vision no less. I told a cardiologist I work with, Dr. Weiland, what was happening and he examined my eye and told me that I had to go see an ophthalmologist. After seeing the ophthalmologist and going through a series of vision tests she told me in a concerned voice that I had to see a neurologist soon because i was at risk of losing my vision in my left eye due to increased pressure to my optic nerve. Dr. Weiland saved the day for me again the following day when he called me and told me that he was able to get me an appointment with a neurologist. I went there and he told me that due to all the extensive dental work I was having that the pain associated with it put too much stress in my body and the end result was my left optic neuritis. After that consultation I went home with 2 prescriptions: one for prednisone, which is a steroid, and one for ativan, a medicine that would help me sleep. The amount of prednisone which I was to take for the next three days would wreak havoc on my body and could, in the words of my neurologist, "blow you up and you won't be able to sleep". Love the bedside manner: "blow you up". Wow. Those pills saved me from being admitted to the hospital for IV steroids and I was grateful for that but those pills were so hard to swallow because they tasted awful!!!! I had to take 50 pills a day to equal 1000mg of predisone!




Needless to say, they saved my vision and for that I thank God who put people in my path to help me when I needed it most. (Oh yea and I didn't "blow up" nor need the ativan to sleep. )

My loves...

My family....my reasons to never give up.

My love, my best friend, my comedian, my comforter.

Let's start from the beginning...

It all started November of 2005. I went to my doctor because I had seen a "floatie" in my left eye. I was a home one day talking on the phone and started seeing this little black thing fall from the ceiling. I tried to pick at it and it turned out it wasn't something that was real, it was actually something my left eye was making me see. I rushed to get an appointment with my primary care doctor and when I saw her it almost seemed like she was more scared that I was. She tried over and over to get some deep tendon reflexes on me but couldn't. As any good doctor would do she handed me over to another one who hopefully knew what was going on with me. I started seeing my (then) neurologist who did a series of exams on me then suggested an MRI. I remember the MRI was scheduled the day after Thanksgiving and Rosy (my sister) went with me. It was almost 2 hours later that I emerged out of that machine still without a care in the world, still not even processing what could be wrong with me. We went home to have left overs and that was that. I received a phone call a couple days later from my neurologists' office that I was to have a lumbar puncture to properly diagnose me. My mom went with me this time and I almost wished she hadn't. I could see how scared she was and I knew she could sense my fear. Half way into the lumbar puncture I started hyperventilating and my mom started to feel faint, the doctor told her to go and sit down as I somehow stopped myself from passing out too. I went home that day under strict instructions to lay down the rest of the day to prevent complications that could arise due the lumbar puncture. My mom and Giovani (who at that moment wasn't even my boyfriend yet) stayed with me the rest of the day and didn't let me lift a finger. Giovani cooked us dinner and cleaned up. Days later I was with Giovani with a car expert on how to fix a dent I put in my own car when I received the phone call I never thought I would receive. When the doctor identified himself, I separated myself from where Giovani was talking shop to that guy and sat down on the front step of another establishment. I can't remember the exact words the doctor told me but all I heard was multiple sclerosis. Those two words shook me to my core. I instantly became scared and started crying. I went back to where Giovani was and without needing to ask me anything he instantly put me in my car and told that guy that we would have to resume another day. All I remember of that car ride was crying, I can't even remember how Giovani took it. 

We went to his parents house and I looked up multiple sclerosis online just to find pictures of people with canes, walkers and wheelchairs. My life was over. I was going to be in a wheelchair, that was to be my destiny. My future plans of getting married and having children crashed right in front of me without so much as a warning. I don't remember the rest of that day, but I do remember going to the neurologist another day so he could tell me of my options and what multiple sclerosis really means. I remember my first question was if I could have children. He said that having multiple sclerosis wasn't going to interfere with getting pregnant and having children. This wasn't so bad, I would have a normal life, or so I thought at that moment. At that moment in time I didn't have any major symptoms, but I did have fatigue. Although this diagnosis was the most horrible thing that had happened in my life, it was almost like a sense of relief. Once he told me that a major symptom of multiple sclerosis was fatigue, I no longer felt like a lazy person. I remember having days when all I wanted to do was to be in bed and punishing myself for doing so. Then other things that I had felt or had gone on in my life started to make sense, the doctor even told me that I probably have had MS since I was a teenager. 

Although I know so much more about this disease now, it's still hard to predict what will happen to me in the future. This disease not only takes away your power but in my case has helped me realize that I never had any power to begin with and that if I want to rely on something it can't be myself, it can only be God.