Been a While

Published January 30, 2016 by Nichole Smith

I’m back. I’m sure some things have happened since last I’ve posted, but nothing too crazy.

This will be all over the place I’m sure….

I still have Dermatomyositis…probably always will but at least it’s somewhat under control with the meds. The weakness and fatigue are the worst part at the moment. Can’t even remember what it’s like to not be exhausted. Talking, hell, listening to people is crazy exhausting…so hard to put into words. I go anywhere and I’m so emotional because I am SO tired. It will be huge when that side effect is gone.

Thankful for a mild winter, the cold hurts. But in extreme heat I get more migraines, I would love to live somewhere with a middle ground!

Been going to our local Hockey games with the family. It’s a tradition I love and I know my daughter will always remember! I personally love the fights, and when fans throw fish on the ice (our team is called The Walleyes, makes more sense right?)

Now I’m the lucky winner of a hyperthyroid with many nodules. Popular belief is that a side effect of hyperthyroid is weight-loss, guess who isn’t losing weight? But I have been going to the gym and drinking lots of water, so I’m trying. Going to UofM next month to see what we can do about the whole thyroid thing.

MIGRAINES….ugh, they have been so bad lately. Luckily the nuero has determined the nerve blocks in the back of my head seem to. Help lessen the pain and frequency. But they are supposed to be delivered every 3-6 months, I seem to need them every other or so. On Christmas Eve at my dads house in Michigan I ended up with one of my worst ones. I was so sick there and managed to drive home (vomiting into a plastic bag all the way)my poor daughter in the car begging me to pull over. I knew if I did I wouldn’t make it home. Ended up in the ER where they helped me majorly.

 

well I suppose that all for now….

Back at the beginning?

Published September 13, 2014 by Nichole Smith

Not really sure what’s going on but I’m in a lot of pain lately. The docs answer is to put me on a couple weeks worth of the dreaded steroid I’m finally off of. Guess right about now I’d try anything.

Went to the E.N.T. today to discuss the possibility of uvulopalatopharyngoplasty to help with my sleep apnea since the CPAP machine and I are not on speaking terms.

I’ll tell you, this surgery sounds scary. For a normal person it sounds scary, for me it’s terrifying.  The doc said he’d go into my throat and remove my uvula, tonsils, and cutting some flesh to make the airway larger…….I person who had it done said it was basically like the surgeon took a sharp ice cream scoop and scooped all the extra stuff. I just don’t think surgery is good for me…I’ve changed my mind twice already, so ask again tomorrow and I may say that I’m all about getting chopped up.

Anywho…I’ve attached the link to a Myositis Awareness Video I made starring some of my fellow Myo Warriors… I hope everybody can see it since I’m done making videos for a while,

http://m.youtube.com/watch?sns=fb&v=rBFAf9DJksg

Taking a Break

Published April 30, 2014 by Nichole Smith

This will probably be the last update for a while. I’m pretty tired of the repetitiveness of it all.

My numbers are rising yet again and this time along with the weakness and pain I’ve been having the added bonus of nerve pain throughout my body.

As far as the fatigue goes, I’ve gone from bad to horrible, falling asleep when trying to listen to someone talk, when I’m driving, pretty much anytime you shouldn’t be falling asleep. 

Had my sleep studies and ended up with a C-pap machine.

I did start using my C-pap machine at night about 50% of the time so I’m hoping that will help me a little with my energy. Even though I only know how to use the machine half of the time and when I do I can barely make it through the night with the monstrosity on.

Starting to really feel down. I can’t play with Alexa. I try to do some activities and I end up completely out of breath and too tired to stand. Hoping for normal again one day. 

 

For a while I’ll be offline. 

Looking for an Old Friend….

Published March 24, 2014 by Nichole Smith

Things are steady right now. Numbers are good. Feeling the same. But I logged onto Facebook to say “Hello” to a friend and future sparring partner and she was no longer on Facebook. I can’t find her anywhere. 

Her name is Susan Morrow. I know she reads these blogs. I’m almost to the point of offering a reward for her return.

She’s about 5’8″ or 5’9″ (that’s what I’m guessing)

Brown hair

Quick witted

Likes to take long walks to the market for crumpets (I may have made that one up).

If you see her, please let her know I’ve been looking for her!!!

Worth the Wait!

Published December 5, 2013 by Nichole Smith

I haven’t been on here much. Got tired of saying the same old things and people don’t want to hear the same old things.

SO I will say something different! My blood work came back almost all normal. From my red blood cells, white blood cells, liver, almost everything!  My CPK is hanging at 300, but not too shabby!  We (as in the doctor and I) think the last treatment I had, which was Rituxan, may be why I am improving.

I’m recognizing the person in the mirror and couldn’t be happier about that!

I still get super tired throughout the day, but not like before. I can keep up with my daughter better, which makes us both very happy. We’ve been spending some quality time together, she’s growing up way too fast.

Well, that’s all for now. I’ll post the before and after pics. The before is me with my moon face, well “half-moon” face. It was actually way larger at the beginning of all of this! The after is me now.ImageImage

Oops

Published July 3, 2013 by Nichole Smith

I forgot to mention, I did try IVIG the second time around. After all the stress of hoping insurance would cover the treatments they finally did…then I ended up in the ER with meningitis because if the IVIG. It was HORRIBLE. Wouldn’t wish it on my worst enemy. Well maybe…

It was bad. So that’s why we are trying the Rituxan through the IV for now. We don’t want Meningitis anymore. It literally felt like my brain was going to burst out of my skull.

On the following, new and improved pain chart I would have been about a 7 or 8, for reals…

I was about between #7 & #8, no lie

Been a While…

Published July 3, 2013 by Nichole Smith

Guess who’s back? Haven’t had much to share, but figured I’d pop in and give an update.

My CPK (muscle damage) numbers are still too high (guess they are having way too much fun up there) so the docs had me do two days of an IV medication called Rituxan. It should be about 3 months before I know if that makes me feel any better.

Been having some heart “episodes” and breathing issues again. It’s all part of the game. Good days and bad. So I will be going for another Pulmonary and heart test soon.

My primary doctor is gone. He just kinda left town I guess, didn’t leave any contact info and that really sucks because he’s the first person who I really felt comfortable with going to for medical issues. He is the reason I was diagnosed so quickly when some people go months and years without a diagnosis. So now I’m forced to find a new doctor and try to “teach” him about what I’m going through.

Oh well, good news is…it’s summertime!!!  🙂

Recap

Published February 5, 2013 by Nichole Smith

For those who are new here: I was diagnose with Dermatomyositis in March/April 2012 while enrolled in the Radiography program at Owens Community College.

Click here for general info on the disease:

http://www.mayoclinic.com/health/dermatomyositis/DS00335/METHOD=print&DSECTION=all

As far as how it’s affected me? I’ve had to drop out of the Radiography program, I can’t work and my social life has suffered some.  But I do appreciate the time I’ve had at home with my family.

With diseases like this which are sometimes called invisible diseases, since you can’t always see the symptoms, you don’t always know what your friend or family member is going through, so I hear a lot of people in my situation complain that their friends thing they are faking. Let me tell you, there’s no faking about it. On Monday I take a Chemo medicine, it makes me so sick that alot of the time I’m weak and throw up through Wednesday.  Then hopefully Thursday I’m better but the weakness is still there. I’m always weak to a point because of the disease.

Now if I want to go out to dinner or the bar, I need to save my energy up that day. And even when I do that I’m still beat all to hell while I’m out.  But even though I’m tired and or in pain while I’m out, I will still accept the occasional invite out, because I need to feel normal.  So if you invite me out and I go, it’s not because I’m miraculously healed, it’s because I just really want to be with people and feel human.

I could use a cane for places that I have to walk long distances, but I’m avoiding it (although that would give me quite the advantage in my next bar fight ; )  I dread going anywhere that I have to walk upstairs, because it’s very hard for me. There are adjustments that I may need to make depending on what happen with my treatment coming up in the near future, but the main reason for this post is awareness.

So many people don’t tell there friends about what they are going through because people don’t know how to react.  And I’m the same way, I have NO idea what to say to someone who says they are sick. But right now there’s no cure for this disease, and not enough people know about it. There are many medical professionals who have never even heard of it. That’s a problem. So I’m just trying to spread the word. If it helps one person, it’s worth it.

How is this related to JM (Juvenile Myositis)? Children with Myositis grow into adults with Myositis. WE ALL NEED A CURE!

Night Out

Published January 19, 2013 by Nichole Smith

Finally got a night out. Didn’t feel like going out but damned if I wasn’t going to go! It was so fun to go listen to my friend’s band and hang out with everybody. Then the dreaded moment came when you get drug out to dance…

I thought I could handle it until about 20 seconds into the song and I felt like my legs were going to give out on me and the pain started in. We took breaks and I managed a couple more songs but the last actually caused my legs to give out at one point. Funny because the song was We are Young, by Fun, where part of the lyrics are “So if by the time the bar closes and you feel like falling down, I’ll carry you home, tonight.”  And I so could have used a lift, I’ll tell you that.

BUT, I would do it again and again and again.  If given the chance. I’m tired of being sick and tired. I’m tired of being told I can’t do this or shouldn’t do that. It’s just time to have fun.

 

Where’s Me?

Published December 26, 2012 by Nichole Smith

I can’t find her?  I’m so tired. I’m tired of shaking so bad I can’t put on make up without looking like a cracked out clown (not a good look by the way). I’m tired of not being able to blow dry my hair because it hurts. I’m tired of getting out of breath just from taking a shower. I’m tired of getting ready, thinking I look pretty good, only to see pictures later and wonder…”Who the hell is that??”

Where’s me?  I know it will get better. I’m sure it will. I’m just getting impatient.

Happy Wednesday 😛