Have you ever really stopped to think to yourself…what if? What is today was the last time I saw this person? Or what if those were that last words I said to…whomever? I know…deep thoughts! Today was a sad day. I went to a funeral of a very dear friend’s grandmother. Funerals are always awful…duh! But this one was really sad to me. I didn’t cry, I held it together and even cracked jokes to make my friend and her family laugh. It’s what I do. Can I tell you? I DO NOT HANDLE SADNESS WELL! I am THAT GIRL! I can go full stand up comedy hour. Don’t get me wrong…it’s not fake! I am that funny…If I don’t say so myself! It is just NOT APPROPRIATE TIMING!  I just can’t help myself. I do not like to see my loved ones sad. Hate it! Every bit of it!

So, last night as I was mentally preparing to head to Delaware (my hometown – I’ll get more into that in future blogs), my mind races with memories of my younger days in Wilmington. The church that the funeral was held in today was actually directly across from the house I grew up in. It was being held in MY CHURCH! I used to love to listen to the church bells at night as I fell asleep. It was always very comforting .The city has changed so much. But somehow, being in that church, time stands still. I digress. In my mind, I was imagining how I would somehow love to walk through the house I grew up in.I moved a lot as a child because of my parents divorce. This house we lived in for a while. I felt grounded there. I had a lot of memories there. I wanted so badly to just see the inside once more. But, how in God’s name would i possibly do that? Was this even realistic or were my night meds doing all the thinking for me? I imagined every angle of the story…or did I? Several scenarios crossed my mind: 1 -No one would answer the door (probably the best case scenario),2 – A little old lady would answer and offer tea and cookies and we would reminisce about how Wilmington used to be, 3 – I would enter the house and never be seen again (worse case scenario but probably most realistic). Well, As I drove down the block approaching my old house the unforeseen scenario 4 hit me square in the face…the house was no longer there – torn down. I never even thought that possible. I guess the last time I drove by and saw it was the last time I would ever see it. Thankfully, I have my memories. I pray that as my mind has its moments of confusion and fogginess, I don’t lose the memories I hold dear. Until then, I replay them in my mind over and over. But, really though, who thinks of knocking on a door? Talk about a cloudy mind! I must be losing it! Thank God it was torn down! I probably would have never made it home today! I think I may need a baby sitter with me for now on. I have a Med Alert necklace at home…maybe a need a tracker implanted in my neck. I joke – but my mom reads this blog. If you know my mom, within about 5 minutes of reading this line, she will be googling human tracking devices. This is my life!

chip tracker

This evening, I got home and got a call from my own grandmother’s nursing home. She had a small scratch on her back. They have to call and notify me. I am happy they do. I will go and see her tomorrow to make sure she is ok. She used to be the most active woman ever. She taught me how to jump rope, play jacks, play cards (rummy 500) and so many other things. I loved spending time with her. Its sad. She had one son. My father. He doesn’t answer the calls from the nursing home. So they call me. It is so sad for me to put myself in that situation, with me being in a home and my sons not taking their calls. It really breaks my heart. All she did for him his whole life, and now she can’t “do” for him anymore, so she is “kicked to the curb”. Can’t even answer a call from the nursing home for a scratch or to approve a flu shot or to go for a visit. It turns my stomach. I will go and see her. I will tell her that I am 44 years old about…44 times and smile each time. I will tell her that Tyler and Jake are 16 and 18 about the same amount of times. She will, in the sweetest way ever, tell me that she is glad she is younger than me. And when I ask, she is usually just 16. That must have been her favorite age.

Health wise – I am ok. I am very tired but doing ok. Some new meds added to the regimen that are kicking my ass. But Scleroderma is known to do that. My GI is acting up again. My girlfriend mentioned tonight that this is when it started last year. I never even thought of that. Thank God for all of my favorites! I don’t know what I would do without my amazing friends! This friend in particular actually sat in the hospital with me last year and took notes for a whole day from all of the doctors and specialists so that everyone would know what was going on because I was so out of it, I had no clue! I heart you TE! The tubie option was brought up again – I declined. I am going to do new Gastric Emptying Studies. For those of you out of the Sclero world – The GES is a nuclear medicine study that involves drinking water and then solid food  (typically scrambled eggs with toast) with radioactive material in them and then tracking how long it takes to move through the GI system. Because I have gastroparesis, this test usually shows huge delays. We are now considering a gastric pacemaker instead of a tube. I’ll keep you posted.

On the home front, Jake and Liz had prom this past weekend – so freaking cute!!! Tyler and Kelsey have prom this weekend! LOVE LOVE LOVE!!! You know I just eat all of this up! I love it! I will post pics as soon as I get them all back from the photographers. Kelsey had a facial yesterday and hair and makeup on Saturday. It’s so different having a girl around the house. And I wouldn’t change it for the world! I have the best of both worlds! Then, onto graduation and the graduation party in June! Busy times for this family but all very exciting! I am one crazy, exhausted but extremely proud momma!

So, what was my point to this blog? Seems disjointed? Well, my point is loss is everywhere and is never easy and you can never be prepared. It will always hurt, even if you think you are prepared, it will still hurt. I watched my friend and her family mourn today and it hurt, they were hurting and it hurt me to see that. They lost someone that was the matriarch of their family. No preparation can ease that pain.

I thought I would see my old house today and maybe even in my crazy ass head, go inside. That didn’t happen. The whole damn house was gone! If I had know the last time I saw it, I may have stopped and taken a picture, looked a little longer.

My grandmother has lost her mind – just kidding. But, she has lost her memories. And that scares the hell out of me. That is my biggest fear. I never want that to happen to me. She does remember me. Which makes me happy. But, she has forgotten more than she will ever remember. In the process, she has lost her son. Not because of anything she has done. Not at all. But I guess in the process of growing older. That is heartbreaking. And the sad part is, she does know that he is not around.  And that is even more heartbreaking.

My disease has taken so much from me: my health, my job, my independence to a certain degree, my energy, my smoking hot body haha – who am I kidding? I didn’t have that before sclero! I can dream, can’t I ???!!!!, some of my cognitive ability and so much more. BUT….

IT CAN NOT TAKE AWAY – my love for my children, my husband, my family, my faith and my friends! And that is what keeps me going – EVERY DAY!

Love and Hugs to All!

Woohoo! My Life is a Blog!