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..."