Three weeks off from Instagram stories. Them stories I loved to do daily; communicating with all my followers, sharing my life, spreading my crazy character and goofing around like a little kiddo. Every single day.

Three weeks and 4 pics posted on IG: 1 from a year ago, one two months ago and two of them taken during these few weeks on my better days. Better days, what does it mean? It means those days I am not in pain so much, that I am able to walk without stumbling all the time, that I am able to stand without feeling dizzy, and that my speech is not that bad. I have had few better days, then it goes worse again. Last three days have been worst and in Thursday night I started to have insane pain in my occipital. Until that night the pain had stayed in middle of my forehead and little bit on right side temple as well.

After that pharmacy issue I told you about earlier, and after people’s reactions I have been afraid to talk to them anymore. I do not answer to my phone anymore unless I know the caller is “safe”, but I do keep social life up all the time with my friends, as I haven’t changed as a person, but still love being social. I am still me!

On Thursday evening I actually tried to face this fear, but it didn’t go well at all. I received nothing but negativity over and over again. I kept saying “I’ll be fine, doctors will fix me up” and what I received was “I don’t know if they will, your life seems to be over. You used to have a career and social life, now you can’t even talk to people”.

I felt so darn bad that I just cried, cried and cried. I will rise again, I have so many things to find my strength and force from, and I will. I have so much to do, so many kids to rescue and so much positivity left to share. I will be stronger. And after all, what comes to the people, I am also going to be so much smarted than I ever was.

I am not feeling sad my speech is bad, I am smart enough to understand the life in a bigger picture, not just this superficial way. I have kept focus on all I can do: I can still speak even if it’s not perfect, I can walk even if I am clumsy. I knit even if I am slower than before. And most of all; my brain still works, and for somehow I feel even better than ever before. I am enjoying of my life a lot, and not the negativity of anyone can take it away from me.

I am very motivated to get my speech better and I practice it every day. It’s not a problem for me, but oh, what problem it is for others. And that’s the thing that makes me feel sad. At first it was hard for group of people as I sounded so odd, even scary for someone, and now it’s even bigger problem as they can’t understand me so well. I do my best to talk slowly and as clearly as possible, but if there’s no patience in interlocutor, then there’s no conversation as it asks some patience to have a one with me today. Very quickly this all have shown me how rude people really can be. I have always known that, but I have never this way realized what it can be for them, who would actually need a special care. I do understand it now, and this has changed me forever. I will be there even more for them, who really need my power. I will find ways.

Everyone is thinking what is wrong with me. I’ll let you know right away when I know myself. On Thursday I talked with nurse from University Hospital and she said the doctor has sent new information in mail and I should wait the letter. If my state change, I need to go to emergency immediately. So, I keep waiting.

In a bigger picture I can see these symptoms are not new ones. I just have lived with them without worrying. Stumbling has been there around 6 months now, and those breathing issues I thought was caused by BenBen’s passing, are still here, mostly at nights now. And those headaches, they have not been teasing me everyday as now, so I thought it was normal, just because of stress. And yes, my sight went worse in the summer as you remember, I for some reason needed to get new, stronger glasses and prisma to ease squinting in my other eye. Slowly I started to mess up with words, which I explained myself with tiredness. So only when I hurt my shoulder I went to see the doctor, and then in two weeks it all went worse so quickly. I don’t know if I am naive as I still wish this all is just because of little hernia pushing my spinal cord. However, I am going to stay positive, waiting for doctor’s info and following their orders then. That’s my plan so far.

So how I am spending my days? I am clumsy, but not totally useless. My brains work, I haven’t lost my understanding. I work from home by laptop as much as possible. I keep my fingers working by knitting and rest a lot. I make sure I drink enough. I haven’t outdoor for over a week, the weather has been bad and I am not able to go outside alone. I miss that so much. After all I have kept focus on positivity, on all beautiful things I have in my life and all things I can do. And kept looking for some bravery to open my IG stories, and share this reality the way it is. Not yet I have found it. At this point I am too vulnerable to handle possible hits from haters, as I have already faced it so much.

I want to say big thank you for everyone who has been patient with me. Thank you for all truly friends in my life holding my hand when I need it. I’ll get there and show my tongue for them who didn’t believe I would. And I know I have a giant team in heaven cheerleading me to keep going ❤️