Tuesday, April 30, 2013

My First MS Blog: Sick of Being Sick

My First MS Blog: Sick of Being Sick: So I have not been doing much of anthing lately but trying to get over this horrible bronchitis and get through each day as best as I can. I...

Sick of Being Sick

So I have not been doing much of anthing lately but trying to get over this horrible bronchitis and get through each day as best as I can. I can definitly say that being so sick has definitly made my MS symptoms more noticable to me. Everyone can see and hear me hacking and coughing and blowing my nose but what no one else can see is the dizzziness, the tingeling, headaches, vision issues and the FATIGUE! Again the cold on top of the MS has made the fatigue double. Not fun.

So what have I been thinking about lately? I have been thinking about how pissed I am! I mean really, is it too much to ask to feel well, get better fast, only suffer with the symptoms of a cold and not all of this other stuff?  I spend my fee time "resting" even though I would rather be outside in the beautiful weather or have the energy to do the things I want to do.

Work for instance is something I enjoy 99% of the time. I love my job. Reall I do and I know how lucky I am to be aboe to say that! But wow has it been a struggle lately. I missed 3 days over this cold that has hit me like a mac truck. I have been back for a week or more now but I am struggling! I just want to go back to bed. Not because I am lazy but because I am so run down! I have no answer for this other than to express that this is hard! I am angry to spend my precious vacation days home sick! I am angry that I feel so crappy that the things that normally bring me joy are exhausting. I am angry that people keep telling me I look better when I really feel awful. No one wants to be that person who says "well thanks but I really feel like shit, let me tell you about all of my issues combined." So I smile and say "yea I'm getting better, thanks." Meanwhile my body is struggling to move and concentrate. I am sick, tired, and in between all of this I am taking my shots and smiling to keep up appearances. I can't be a total debbie downer all of the time, so I try and cope. I hide it, from everyone. So I am taking it out tonight in my words on here!

I am not going to apologize for complaining because this is what MS looks like sometimes! This is what MS feels like sometimes! I don't like it, in fact I hate it! I want to feel better. I want this lingering cold to go away and my MS to calm down! Is that too much to ask? Oh were the days when I could just nurse my cold and feel better in a few days.

Just today as I was at work I really thought about how great it would be if I were able to just be off- not work- take care of myself. Of course this is not a reality and is not what I want but where do you draw the line of living and taking care of yourself vs. struggling to do things you have to regardless of how it affects your quality of life. It is not the work or "working", it is the thought of what is more important. When you feel like crap you should not have to spend the little energy you have getting through the day just because that is what you are supposed to do. But that is life.

Today I was told a story by a friend of mine who has- had- a friend who just retired at age 52. She had cancer and she and her husband just 2 weeks ago bought a house in Florida to retire to. The wanted to spend their retirment years enjoing life. After all they are young. Well just today that woman passed away after an oddity with her cancer- died suddenly! So as I listen to this story I mentally think about what is more important. Do you suffer though work and the have to's of life just because you are supposed to? I guess the answer is yes, but that really stinks.

I don't know if I am making much, if any, sense. The past few days have been "bad days". Sick of being sick. Waiting to feel better. There is nothing worse that waiting for something you are not sure if you are ever going to get. I go to bed each night hoping that tomorrow will be better. I will do the same tonight.

Just as it is one of those days it is one of those blogs!

:)

Friday, April 26, 2013

My First MS Blog: My First MS Blog: MS Is Eveywhere Now....

My First MS Blog: My First MS Blog: MS Is Eveywhere Now....: My First MS Blog: MS Is Eveywhere Now.... : Since my diagnosis in February 2013 MS is showing up eveywhere. let me explain... Before my d...

Monday, April 22, 2013

My First MS Blog: MS Is Eveywhere Now....

My First MS Blog: MS Is Eveywhere Now....: Since my diagnosis in February 2013 MS is showing up eveywhere. let me explain... Before my diagnosis I was aware of this disease. It has...

MS Is Eveywhere Now....

Since my diagnosis in February 2013 MS is showing up eveywhere.
let me explain...

Before my diagnosis I was aware of this disease. It has been mentioned to me several times over the past 10 years by my MD's but somehow the diagnosis evaded me, right or wrong. But now that I am "official" I can't get away from seeing and hearing about it everywhere without looking for it. Example: we all just learned about the passing of Annette Funicello (spelling?), so that grabbed my attention as I watched over and over of her decline. I became glued to the TV watching and contimplating if that would be my fate one day. Will I be unrecignizabe in a wheelchair someday? God I hope not! Then there was the week in March that is National MS week. So on with the week long info sessions on that. But I am glad to have a time of year when MS is celebrated with charity events etc. Then today I am watcing Dr. Oz and out of the blue they are talking about some random diet and the one woman stated she is on this diet because of her diagnosis of MS! What?! MS is everywhere.

My point is, isn't it funny when something like this happens to you that you see it everywhere, where as before you would have never noticed. It is just another reminder that I have MS and I will forever notice every mention of it. Has this happened to any of you, whether you have MS or some other thing that makes you more aware and you see it everywhere?

On another note, I spent half the day at the PCP getting my antibiotic, inhaler, and cough syrup for my inherited bronchitis. Please know that my co-worker is now feeling much better! lol! I am a bit bitter about this, I must get over it! I actually threatend to cough on her today as we were joking about it...little did she know I s not kidding! Again, I need to get over this! lol

So I am trying to rest and get better. I go and see my neurologist tomorrow and have some quetions for him now that I have been able to process this new diagnosis. Then I also have the home health RN's second visit tomorrow. I guess just to check in that I am doing ok with my injections. For the most part I am. But let me just tell you the 44mcg dose burns like hell! I need to discuss this with her as injecting my legs is almost unbearale! We shall see what she says. What was once something I didn't mind doing has not become something dreaded because I know it is going to hurt like hell. This makes it difficult when you know you have to do this for the rest of your life!

Anyway, I hope all who reads this blog is well and is enjoying this nice weather! I hope to be feeling better soon! :)

Saturday, April 20, 2013

My First MS Blog: I Refuse to Feel Guilty...

My First MS Blog: I Refuse to Feel Guilty...: Well I can refuse, but I still feel guilty. Why you ask? Because the fatigue of MS plus my new head cold has caused me to spend the entire d...

I Refuse to Feel Guilty...

Well I can refuse, but I still feel guilty. Why you ask? Because the fatigue of MS plus my new head cold has caused me to spend the entire day in bed sleeping!

MS fatigue is terrible and indescribable, but I will try. It is like your whole body is weighted down and just to pick up your feet or raise your arm takes all of your power. Your body weight feels double. Keeping your eyes open and trying to pay attention to what is going on around you is a feat.

This is different then just being tired. It is like you have not slept for days even though you just slept for 12 hours.

I did manage to do some small house chores today but I am just leaving them for tomorrow hoping I feel better to push through them and then rest up for the next work week.

Not my most exciting post but this is all I can concentrate on writing today! Be well eveyone!

Friday, April 19, 2013

My First MS Blog: If Your Sick....Stay HOME!

My First MS Blog: If Your Sick....Stay HOME!: Ok, so besides having MS I am a healthy person. I am a normal weight, I eat healthy, I exercise (sometimes), and I take vitamins. Overall I ...

If Your Sick....Stay HOME!

Ok, so besides having MS I am a healthy person. I am a normal weight, I eat healthy, I exercise (sometimes), and I take vitamins. Overall I can say that I do not reguraly even get a yearly cold. And yes I am proud of that!

So guess what? Last night started the scratchy throat....and then today it was worse. And I have that overall "getting a cold" feeling.

So how did this happen to me you may ask? Well, my theory is that on Monday a co-worker of mine came to work deathly ill. I mentioned that she should go to the MD she was so bad, and she did. Tuesday she stayed home but otherwise has been coughing in the office all week. And like everyone else touching door handles, using the phone, breathing the same air..etc.

So here is my advice to everyone- stay home if you are sick. Stay home if you are contagious, stay home if you cannot speak one sentance without coughing. If the MD gives you a diagnosis and and antibiotic- stay home!  And think about everyone else! The company will not colapse if you are not there for 2-3 days! In fact it will be even better because the rest of us will not be calling off later because we are now sick.

Ok, done rantig, because I HATE being sick. I mean no one really likes it but I REALLY hate it. And of course I now have the fear of what a cold (or bronchitis, like she had) will do to cause any type of MS flare up. Does illness pre-dispose you to have a flare up more so them when you are healthy? I don't know. I will be googling that later tonight.

Oh and tonight is a shot night so hopefully that will no depress my immune system even more and cause any "flu like symptons" that are likely. I have been lucky enough to not have those as a side effect. I guess this post has more to do with my fear of what a cold will do to my MS as opposed to suffering through a cold.

So Please if you are sick- stay home, get well, and think of others. I am goin to go google now!

Love!

Thursday, April 18, 2013

But you look so good....

So I have read simlar things on other blogs that I would like to reiterate here.

Since my diagnosis it has been a rough ride of very low lows and normal normals. Once diagnosed you go through a battery of tests (multiple MRI's, blood work) AND the highlight, drumroll please... steriod infusions. The infusions ( I received 4 doses IV beta sterol) and then went on a tapered dose of Prednisone. I am telling to this becase this was the low of the low! And during that time I did my best to make it to work and do what I could. But let me explain- I looked and felt like crap! You could see I was sick and something was terribly wrong.

Fast forward to the here and now and you would look at me and I look like myself. I don't look "sick". I wear makeup, I dress as I always do, I style my hair. I look good! But the reality is I am not the self I was 6 months ago! My physical apperance has not changed. I have no mobility issues, I don't use a cane, I can walk in a straight like (kinda, lol), I can use my arms...and the list goes on and I am SO grateful for what this disease has not caused me thus far (and hopefully never). BUT there are the things you cannot see the fatigue, the blurred vision in my right eye when I get tired, the headaches, the tingleing that come and goes, the bladder issues, the dizziness that hits whenever it feels like it, the welts all over my body from the thrice weekly injections, and did I mention the fatigue?

So yes I look fine and I am fine, But I still struggle everyday. Do I struggle as much as others-no, but it is still my struggle and it is hard!

Why am I saying all of this? Is is so no one will ever tell me I look "fine" if they know I have MS? NO. I am telling this to you because you never know what others are going through when they look fine! Did you ever see someone park in the handicap spot and say- "They look fine, what a scam". Well maybe they have MS or some other disease and parking close allows them to save their energy to be as functional as possible for that day. Trust me trying to stay as functional as possible for the DAY is a big feat. You plan, you weigh the pros and cons of your anticipated activity, you store up your energy for a big event or day out. Most people don't have to think this way, they just go. Well now I have to think this way and it is hard! So before you judge someone who looks "fine" think again.

Right now I am sitting here looking fine but my nose feels like someone is dusting it with a feather (tingeling), my right eye is blurry, and I am tired as all get out! But alas I am fine. I will make it and do it all again tomorrow and forever, God willing.

So be well friends. Enjoy life. Do what you want NOW. And keep in mind that how people look does not accuratly represent what they may be feeling or dealing with!

Thanks for listening....

5:15 AM

So why was I up at 5:15 AM you ask? Because I have 3 beautiful dogs who drive me crazy!!! Daisy, the oldest husky, Jessie, Daisy's daughter half husky/half springer spaniel, and then there is Gypsy my one year ond Husky! Let me not forget to mention the 3 cats I also have, but they are not part of this story today! Yes I run an animal shelter! lol

Ok so this is the normal routine for me lately. I come home from work (after I went to the grocery store yesterday after work). As I mentioned fatigue is a big issue with me these days, so like most nights I am in bed by 9pm. Last night was a shot night so that makes me more tired than "normal".  I usually sleep until 6:30am, and when I mean sleep I mean my house could blow up and I would not notice, I am dead to the world!

My fiance gets up at around 4:30 for work. He feeds the dogs, lets them out and all of that good stuff. Daisy, my oldest husky then comes to bed with her mommy until I wake up. We snuggle and it is her alone time with me away from the puppy. WELL, not this morning. Apparently she did not go outside with the rest of the herd this morning and continued to walk on the bed as I was sleeping! So fiance leaves, and I am up! Great! I let the girls out again and now all is well, they are all back in sleeping on the couch as I sit here worried that the lack of the last hour of sleep will hit me hard this afternoon!  I need all the sleep I can get to be as functional as possible for the entire day!

So here I am blogging at the crack of dawn! I have no children so these animals are my children. They are the light of my day but they are also the pain in my a_ _! Honestly I do not know what I would do without them. They are funny, quirky, and have such interesting personalities. So remembering that I will press on today and remember their fuzzy faces as I try not to fall into and exhausted coma this afternoon! Gotta love my girls!

Wednesday, April 17, 2013

New to Blogging. New to MS

So I am attempting to do this blog thing! I can say that I am not the most computer literate person in the world so this is a little hard to figure out how this all actully works! Yesterday I posted a little blurb just to see if it worked. So today I will say a bit more.

Today was my second shot of Rebif 44mcg. I have tolerated the 8mg and 22mcg quite well and so far so good with the 44mcg. Some site reactions, a slight headache but NO flu like symptoms! That was my biggest fear. So I feel I am well on my way to getting this injection thing down and being ok with it.

I don't know if I will every be "ok" with being diagnosed with an incurable disease but I am managing. I fear the future but I also hold closely that you do not know what tomorrow brings so try and live for today! That I know for sure more than ever. But all you MSers will know that with the extreme fatigue it is difficult at times to do everything you want or think you should. By the end of my work day I am wiped out! I take it day by day and often times push myself too much which makes me not as useful at home. Luckly I have a great fiance who helps out a lot and has ben very understanding. I know I am lucky.

Few people know about this dianosis of mine. Family does of course and a few close friends who I have daily contact with. My work knows as I couldn't really hide it as they were the ones who diagnosed me (I work for Ophthalmologists). They all have been greatly supportive and kind and again, I know I am so lucky.  I do not feel the need to hide my diagnosis, but I am careful to who I tell only because once you do you can never take it back!

I am still looking for support but I have only been dianosed for 2 months so hopefully this blog will bring some of that to me. I have been following a few other blogs and I hope to bring some humor, insight, teaching, and tell you what it really is like to be me and have this new journey to face.

Be well all!

Tuesday, April 16, 2013

My First MS Blog

OK, so I have RRMS! I was just diagnosed in February 2013 at the age of 37! Now for all of us who have MS we know that the symptoms that got me diagnosed were not the first over the course of the past 10 years! But I feel free that I now KNOW what is going on. Hopefully this blog will allow me to share the ups and downs of this new journey!