Oh How Much I MISSED my Bed

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!

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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

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