One year ago I was celebrating Thanksgiving from a bed in the hospital with bilateral optic neuritis – getting PLEX treatments … it was a hard holiday. This year I am thankful that I get to spend the day at home with my family. I may not have the best vision to this day having suffered yet another Optic Neuritis attack … not to mention a recent horrible colitis flare which landed me in the hospital … but there is still so much to be thankful for. I am thankful for my family, my friends, my NMO family. I am thankful for Cali, for being my best friend and always being at my side when I am not feeling my best. I am thankful for my beautiful niece. Just a year ago this time I was waiting for her to come into this world, and she was so worth the wait. I don’t know what I would do without her. I am thankful for the small things that I can do now, that I wasnt able to do a few years ago. I am thankful for the amazing support around me. Life might not always be what I expected it to be, but each and every day I am thankful to see the sun rise and set. Who knows what the next year will bring so for today … and everyday … I am just thankful.
So … I am coming down off of steroids again …. it seems like a better part of this year I have been on them …. anyway, this time around I was lucky. It wasn’t my eyes but rather by gut. Ulcerative Colitis flare! Ugh! So more meds …. and I am experiencing the worst pain in my lower lumbar region of my back. They did x-rays and they came up clean … but OMG does it hurt. I have been trying everything thisevening from stretching it out to soaking it in hot water. What I would like to do is just rip the muscle straight out. Wouldn’t that be a fixer upper? Maybe I can get a transplant? Transplanted muscle tissue? Hmmm.
So I started PT – very sad that my “usual” and when I mean “usual” PT I mean the guy who has been with me from the start is at his other office so I was stuck with semi-newbies to my case … which means I had to explain it as though I were talking to a toddler – which is normally okay but already being in pain … well it made my body cringe at the thought. I need to get a power point together to help understand NMO and what it does to us.
Luckily though it was just an orientation day. We did some light ultrasound on my back and then some heat and electrical stem. Which made it feel a bit better. Until I got in the car to come home. Bumps and swerves kills me. I hate taking pain killers but tonight I definitely need them and I am making them my best friend. Tomorrows goals is to buy myself a heating pad … mine died … so I must get anew one.
So here are a few photos of machines I will be spending some quality time with three days a week for the next however long ….
At least at the end of all this I got to see Aurora and her adorableness! She is 10 months old today – so I got her a present … an owl stuffed animal that she goes AWE too! And today she said Mikey! Were will working on Annie or heather …. one day she will get it. Isn’t she so darn cute though? Definite a meaning for being!
A bunch has happened but most importantly I am on the mend and back at home where I can snuggle with Cali and watch TV from the comfort of my own bed …. but it has also been difficult this time around with people not being as understanding as they once had …. people that I thought that were on my side and that is what makes it so hard to even talk about it … but this blog is about bearing my soul to the world … the good the bad … and the things that makes me cry for hours….
As we all undoubtedly know … NMO and Colitis are both treated with steroids and with steroids, at least for me …. comes a HUGE teeter-totter of emotions. I thought that this weekend, I mean I was just released on Friday – that I would have a nice calm weekend with the wide of the family that seems to get it but instead I got bombarded by pain and a bruised ego.
Night one was fantastic. I got to be released so I could spend the night with my Grandmother for her 70th birthday. It was a surprise and it meant so much that I was able to be there for her. She really does so much for me and cares so much. She is always the one that will come and sit with me at the hospital and make sure I get to appointments when my family can’t get me there. Being there for her – having those special gifts for her including a keychain with all of our (grandkids + great grandbaby) names on the keychain and then a celtic jewelry set that was inlaid with turquoise. She was so happy with her presents and I worked so hard picking them out. And I got to be there when she opened the door and we all yelled surprised. Yes… I hurt, but I had meds to get me through it …. and I had a grand old time with them. Here are a few photos of how great it was to be with everyone!
All of the above are photos of me and some of my family from the party – as you can see it was fifty themed and we had such a good time. I saw family that lives as far away as Georgia and enjoyed watching Aurora play with Baby Cora who is a darling and then some. What I don’t understand is what happened the next day … after such an amazing night with all of these people life changed in a drastic way…
Now I have so say it …. Not everyone is the same. Not everyone reacts the same … when I get sick and am on IV steroid …. and then on oral steroids …. my emotions go haywire!
So …. there is this saying, and I find it completely relevant here.
So, the next day (after the party for my gram) we had another small party. My baby cousin was turning one! This is a little puddle of sunshine that I have loved since the moment I met her. However, she lives in Georgia so this is the one time I got to see her besides the party before. I love to see the babies. And the party was going great … and I got some great photos however,,,,
As I was holding Aurora … her father came up behind me and ripped her out of my arms. It shocked me and upset me .. not so much that he did it (he does it all the time actually) but that he did it in public in front of family) left me emotionally a mess …. and he didn’t say anything …. he just took her and refused to give her back. What I need are for people to look through my eyes and walk through my shoes and understand what it is like.
I found an image that best describes how I have been feeling …. and I will do my best to describe it step by step …
Frustration: This is how I felt at having the baby taken from me. I was frustrated that John would do that to me. that he would choose to make me feel like I was incompetent to take care of the baby. The doctor said no lifting and it hurt me to set, so I was standng and holding her and only for mere moments before they took her from me wihtout even explaining what was going on. How to fix this would have been to explain to me why you felt that I shouldnt hold the baby and why it was against what you wanted intsead of embarassing me and causing me frustration knowing that I am on the steroids ….
Which leads me to: Sadness: Sad over the fact that I can’t to what I once took for granted like holding Aurora. I want to hold her and love her – and taking her way from me filled me with a deep dark hole of depression.
Depression: so many emotions went through me. I felt like I should have just given up. Why make people worry or bother fighting … Im not going to do that … but for a split moment that is how it made me feel, especially when i was told that I look horrible – which led me to
And then doubt – I doubted that I could do it. It makes me feel scary and sad that I might not be able to bounce out. n there is shame … that I am this sick, what do I deserve it … maybe I did.
then there is Grief and Fear … of loosing the baby. That you would take her away from me and never give her back to me. Im not her mother, just her aunt and I dont ever ever ever want to loose her as I love her and rely so much on her.
I feel like you are treating me poorly because I am sick. I want to be treated like I am NOT sick, like before … I have LEARNED over the years my limits and I learned them quickly. I have been through worse and know my limits I would never put Ra at risk not for a million years … but me and her, we connect and she is my reason. If I didnt have her what is to stop me and patients like me from doing the unthinkable (which I would never do) but for the record I need to be together with her and my family … I dislike being treated like an outsider. I need contact and interraction … and most of all I dont need someone who has NO clue what my life is like telling me I look bad … only I know what I am and what I can achieve … we can do this and we will but I can’t do it alone and I thought I wasnt …. maybe I am? Maybe I am not? What I do know right now …
I get up every day with the thought of when I will see that beautiful baby. To get her kisses. She her smile. To hold her in my arms. Before it was just me and Cali day in and day out … and now I have two reasons …. two amazing reasons in a world that is full of negativity. Hopefully this will help explain to those that I freaked on … read the post, read it again … understand from my side what life is like … if you have questions ask but dont presume to know just for seing me one day here and there. You have to live it and walk it just in case for you to understand what I go through. It’s a daily struggle.
But for now … they are my reason
So … what else could I call this awesome stay besides a mini vacation? Hmmm. If only there was a beach with sand, margaritas, and beautiful cabana boys! lol. Nope – not that lucky.
Update for the day ….
A. It is a colitis flare. So I am getting 125mg of IV Solumedrol Every 8 Hours … plus my Benadryl for the allergy to the Solumedrol. Fun!
B. Possible C Diff … praying not!
C. I possibly have a compression fracture hence the bad pain in the lower part of my back. Though I don’t remember falling or hurting myself .. but I am apparently susceptible to them since I have been on high doses of steroids, etc. So I am waiting to get in for an Xray to confirm.
D. Well …. I have blown two IV’s so far. I have a third one put in … it looks a bit more stable so here’s hoping that it is.
E. I got a blood bath today! Yep – right out of a Grey’s Anatomy episode …. They flushed my hickman catheter lines … and the nurse forgot to put the clamp on …. and I didn’t realize that I was steadily getting soaked in my own blood … and I was even surrounded by three nurses working on getting a new IV line in. So I probably ruined a perfectly good shirt all because I had a ton of blood everywhere …. I looked like Carrie I swear! Scared me to death. And I was the first to react so I grabbed the line and clamped it shut and got blood all over my hands to boot. I guess there is a good reason for hospital gowns huh? Oh and here’s a kicker. One side of the cath works perfectly …. good withdraw and flush … the other side, not so lucky. I guess they are going to try the meds to get it to clear tomorrow …. half of me wishes they would just pull it out already.
Well … I am going to rest. It’s almost steroid time again … and hopefully I will get something to help me sleep tonight a bit better than my one whole hour last night. Just wanted to update on my eventful day!
So … yet again I have been knocked down by one of my zillion diseases (or at least that is how it seems to me – lately at least).
I have been feeling low these last few days … crappy stomach with constant trips to the restroom … and finally it got to a point where I called my PCP who informed me to go straight to the ER and get some tests run. We did blood work, stool samples (plural), etc. and it was determined that I had to be admitted to get some steroids.
I am having a colitis flare – due to coming off of steroids (possibly too fast) which made my stomach go haywire so I am now spending the night and god knows how long in the hospital. They gave me a round of steroids a bit ago with some benadryll (didn’t I just have IV steroids like yesterday? It seems like it anyway). So they prepped me before they dosed me with steroids due to the allergy …. and gave me my regular meds. Then they gave me some naproxen for pain – didn’t work. So they switched me out to Percocet for now. That and a liquid diet … YUM. I couldn’t even eat my stomach is so crappy … I managed a little bit of jello and pudding …. and tonight I had two small containers of sherbert … hopefully I start to feel better.
Oh and the great part .. they are all worried because of my back pain that they were playing with my legs …. and I haven’t shaved in a few days … it’s winter! I figured I was not going to be going anywhere so I didn’t bother shaving them …. yeah, I should have shaved.
What I do know is that this hospital (my local small hospital) is amazing. The nurses knew me by name. They are kind and sweet. the only downside is that I am so short I have to like JUMP onto the potty. Oh and I have a private room – and internet access – and my mom brought me gingerale so my tummy will be happy or at least happier.
Check out my pretty IV … and of course me in my double gown. It only took two sticks to get a line in … I was dehydrated so my veins were nil. That and my port is pretty much useless…. I wish they would just take it out already. nasty thing. I hope I don’t blow this one ….
Steroids always make it hard to sleep …. so I am up later than I have been in weeks …. they asked if I have been tired … and I have …. like seriously, I have been sleeping over twelve hours each night and a nap each day … I guess that should have said that something was brewing ….
I am frustrated though. I was supposed to do stuff this weekend … so I better be out of here. My gram is having her 70th birthday and my little cousin is turning 1 and they are having a party – two events I NEED to go to. I will be so depressed …. especially my grams birthday. It is 50 themed and I have a cute dress and shoes and a crinoline to go with it that makes it poofy and swishy …
Then we got bad news about my cousins boyfriend and I feel so bad for her. I wont post names or anything … per her request – but I want her to know that I love her and I am thinking of her. We are here for you my dear.
And finally … what am I doing to keep myself busy …. well watching Vampire Diaries AND Listening to Last Dance by Lurlene McDaniel. (Good Book by the way)
Gracie, a dear friend of mine sent me this and I felt it appropriate to end the blog post with the saying
This is for u:) Read till the end! I sent an angel to watch over you last night, but it came back and asked “why?” The angel said, “angels don’t watch over angels!” twenty angels are in your world. Ten are sleeping, nine of them are playing and one is reading this message. God has seen you struggling with some things and God says it over. a blessing is coming your way. If you believe in God send this message to 14 friends including me, if I don’t get it back I guess I’m not one of them. As soon as you get 5 replies, someone you love will quietly surprise you… Not joking. Pass this message on. Please don’t ignore it. you are being tested and God is going to fix two big things tonight in your favor. If you believe in God drop everything and pass it on TOMORROW WILL BE THE BEST DAY OF YOUR LIFE. DON’T BREAK THIS. SEND THIS TO 14 FRIENDS IN 10 MINUTES IT’S NOT THAT HARD. WHOEVER SENT THIS TO YOU MUST CARE ABOUT YOU.
REMEMBER … THINGS COULD ALWAYS BE WORSE!
Have you ever been so tired that you could barely stay on your feet? That is how I have been feeling these last few days. Planning a baby shower, trick-or-treating …. It definitely took its toll on me. However, I love that my family all came together and made the shower and Halloween a success. Cindy got some amazing gifts for baby Natalie – the hall looked amazing with all of my perfectly planned decorations, and then seeing Aurora in her first Halloween costume was well worth every second of planning we put into our event.
Even though it has been weeks since my hospital stay … I have been feeling so run down. Even on my ride home last night I fell fast asleep – even rolling over onto my brother in the car. I am so tired of being tired already. I finally finished tapering off of the steroids so hopefully with the lack of steroids and lack of Benadryl that I am going to need constantly – well I am hoping that it will mean less sleepiness. I hate this though, it’s like I have no energy. I sleep all night – usually in bed by eight and I can sleep as late as noon the next day. And then do it all over again with a nap in between. I can’t stand this. I would like nothing more than to be able to get things done. I still can’t even walk far without getting totally worn out and half of me wonders if it is because of the port which they haven’t taken care of? I just don’t know. I do know one thing though – I plan on calling my doctors tomorrow to see what is up. Maybe I have an infection I don’t know about – maybe there is just something wrong with me …. Or maybe I need more coffee?
So much has happened in the last two weeks. Besides being so busy planning my cousins baby shower I have been busy applying and interviewing for internships for school this January. What I found however is that there is more to me than meets the eye. It’s not just the disability people see but the fact that I do have a brain after all. After interviewing for my internship and proving that I know what I am talking about I was not only invited with open arms to take my internship time there but also to start early by writing papers to be published … which I am very excited about.
To think that I am able to spend my time doing things that I love – writing and talking about topics that I am passionate about. It’s going to amazing!
Other than that I am okay. Still fighting the injustice of medical bureaucracy and waiting not so patiently for the tide to turn one way or the other.
And this weekend is Halloween Trick or Treating with Aurora. It’s crazy that it will be her first Halloween. I can’t wait to see her dressed up.
I can’t seem but feel like my life is changing, but for the better I hope. Maybe my downhill ride is only going to go uphill for here … only I hope the climb isn’t too steep.