“What a slut time is. She screws everybody.” JG

Since becoming sick all those years ago I have found that I easily become anxious, upset, stressed out … pretty much your normal effects of being diagnosed with an autoimmune disease. Each new day brings its own set of problems that I have to deal with … sometimes it’s as easy as opening a pill bottle and sometimes it takes a lot more than that.

 

Lately with this attack I have found that the stress is getting to me. I want to get better faster but it’s going so slowly and it is frustrating? So how am I dealing? Aside from my antidepressant and antianxiety pills … my niece has been my bright and shining star. Well, one of them. Today was a particularly bad day between the pain behind the eye which was particularly bad today … and the pain from the tooth (yes I couldn’t get into the dentist until tomorrow morning) and my sister brought my niece to see me. When my dad came into my bedroom carrying that smiling shining baby girl … it was like an instant light came on inside of me. I went from being kinda in a crabby nobody mess with Heather mood to one of give her to me. Placing her in my arms and listening to her giggle and smile at me, was better than any pill I could have taken to elevate my mood. Better even than that chocolate cake that I have been thinking about (but haven’t eaten).

 

So the question is how do you deal with stress or anxiety or depression? Do you read? Listen to music? Cook? Do you turn to a loved one? So many of us that have been diagnosed with NMO or even those of you with other autoimmune diseases of any sort … we need to find a way to relax. We can’t go around ticking time bombs as it’s not healthy for us or for those around us. I know quite a few people that rely on things like Yoga, personally but it’s not for me. I find that Yoga leads to more spasms for me … which is odd, you’d think, but it does. Though I did love swimming which … was taken away from me when I had my hemodialysis port put in for the plasmapheresis. I was pretty upset to learn about that … and about the fact that it will interfere with some vacation plans I had been making to go to the beach …. Who wants to go to the beach if they can’t to into the water? Okay, I can still walk through the water …. But my favorite thing to do is float in the water and search for shells which you can’t do with the port in … can’t get it wet. Now I am sure I can sort out some way to stay dry …. Maybe I can get one of those super wetsuits where you can stay dry? Hmmmmmmmm. Things to ponder am I right? That would mean I could swim too? And well…. That lifts my mood just thinking about it.

 

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Okay, so now I am sure you would all like an update on how I am doing.

 

I might as well say, pain has been an issue the last few days. Mainly the tooth as you can imagine. I have been using what I have here and numbing solutions but that hasn’t helped me much. I cannot wait to get into the dentist tomorrow morning! My appointment is at 8:25 and it cannot come soon enough!

 

My pain in my eye has been an issue the last few days as well. As we often know it takes time for the pain to subside, but headaches have been plaguing me. The good news is that it seems like each day brings back a bit more. I can kinda make out some grey colors … it’s not just black anymore. But light bothers me more so and I can see more flashes.

 

Of course the steroids don’t help matters much as they make me feel so miserable. Sadly enough it’s not even the fact that it gives me my beautiful moon face, though the hives are a significant factor. Oh they are so itchy!!!! I hate being allergic to the prednisone and I am so glad that I am starting to wean off of them …. And we all know I wish it was faster but I would HATE to have an adrenal storm so I go slow … but we all know what prednisone can do to you health wise: osteoporosis, weight gain, increased risk of infection, increase in blood pressure, high blood pressure, skin problems, muscle weakness, mood and behavioral changes, increase risk of developing cataracts, and an increased risk of developing duodenal and stomach ulcers. (just to retell)

 

So for me … one of my biggest issues is the way steroids make me feel when I am on them. Besides the hives which makes me itchy. It makes me feel exhausted and out of sorts. It makes my heart flighty and makes me feel like I am coming down off a high. In a way my doctor described it as a sort of withdrawl even though we are coming off of the steroids very slowly it is compounded by the fact that I am also allergic to them, which makes it harder for me to come off as I often wind up steroid dependent. Fun right? Yes.

 

It seems like more than lately I have been overly tired. It could be so many things and my doctor feels I am okay (I did check). He said my body just needs time to heal. I feel like I want to sleep all of the time though. But I guess it could be the pain I am experiencing so I am hoping that I will start to feel better after tomorrow!

 

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Okay, so now an update on the PLEX. Things are taking forever. I keep calling my doctor’s office and I am sure that they are getting annoyed with me. But things are going to slow … so I am pestering them … it’s what I do. I know he’s doing his bed at dealing with the insurance and not and I apologize each time I call …. But I feel if I don’t call then things won’t get done.  I will update on that front once I know more.

 

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I watched *The Fault in Our Stars* today with my mom. As much as I hate to admit it one of my biggest fears is that I will one day not be with my family. Not get to see Aurora grow up. Or see my brother get married. Or just see my parents anymore. I sat there with my mom watching this movie and I told my mom that this is a book that I read. That it meant a lot to me. That it MEANT something to me. Have you read this book? Have you watched the movie? I challenge you to get a copy of the book and read it. If you want to read it can’t afford a copy? Email me or message me on Facebook and I will get you a copy. It’s a book I was able to relate to.

 

So I leave you with two quotes from the book … and by the way, I am STILL hungry for that chocolate cake. I have NOT eaten any chocolate cake, but I am hungry for it. Though tomorrow I might just take the plunge and make some Gluteen Free Brownies … will it be the same? No. Will it be good? I sure hope so!

 

“What a slut time is. She screws everybody.” ― John Green, The Fault in Our Stars

“The world is not a wish-granting factory.” ― John Green, The Fault in Our Stars

 

 

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