My weekly sister tradition

I have  been having a lot of sister time ever since my sister Elizabeth moved back here in June. It couldn't make me happier! She will come home for a weekend or I will go there. We started a weekly tradition in August and I have been going to see her every Wednesday  since then :) She lives in a quaint and beautiful neighborhood in Boston and there are many peaceful and perfect moments when I am there! Some of the things we have done together when I have gone is shopping, walks, drinks on the water, and dinner!!

I love love our tradition and that she lives so close and we can do it.  I look forward to Wednesday's and all of our time together!   I truly have the best sister and best friend ever. Her smile and personality light up a room-she is truly beautiful inside and out! she takes all the pressure off my mom and balances it out between them by being here- and she knows that- that's why she's here :) I am happy when I am with my sister and will never be able to thank her for moving her boyfriend and life from Chicago to here! I love love her! She was my first best friend. There is no question in my mind whether or not she truly gets and understands my HD struggle. She is my advocate and one of my biggest supporters! It was the push from her that started my blog, and she supported my Boston Globe article. This drive of mine to be an advocate of HD is all pushed from her.

Happy tears this morning.

As always thanks for reading and thanks to my sister,



One thing that my HD journey has taught me is that people will love you even if you aren't perfect. They will still love me imperfections and all. They knew and loved me before the HD which means they will still love me despite my HD. It was a long road to get there. In the beginning of my diagnosis, I struggled with feeling different than every one around me and I felt embarrassed.  

Now I realize that no one is the same, and everyone must feel different at some point. I am no longer embarrassed, and feel more confident in myself each day. I have realized that people love me before HD and people still love me after. I have learned to embrace my imperfections. 

I am encouraging you to embrace your imperfections. What is some thing you feel different about- embrace it!!

As always thanks for reading- this space is my safe haven,



Fiercely miss my fly over state, Kansas, but am right where I need to b

I have been deeply missing my friends and Kansas lately. I have been listening to old songs and looking at old pictures that remind me of so many great memories in Kansas. I feel blessed to have loved Kansas so much that I fiercely miss it. I miss my favorite country road and country music up windows down kinda days. I miss OS, KU, and Kappa Delta. I miss arbor creek pool days and my house. I miss everything about my friends that I consider family. I miss Royals tailgates and everything about a Kansas summer.

 But with everything going on with my HD, at the end of the day I need all my family-at the end of the day I am right where I need to be. I miss Kansas but Boston has my family and my heart-It's my home :) 

If I was not here I would not have my beach and cottage days. I would  not have this beautiful Fall in New England or the opportunity to reconnect with my Dads family. I especially would not have my family, who are my support system, my everything,  my best friends. 

So I will alway always miss Kansas but Boston is my home. 

Today I am going to my cousin Melissa's to spend time with her and my niece and nephews one thing I could not do if I lived in Kansas.

Thanks for reading,


Weak Immune System

good  morning readers,

I have not been feeling too great.

About a month ago, I had the stomach bug for 5 days, and went to urgent care got fluids. Then a week later I had the same syptomns for 3 days. Then two weeks ago I had a burning pain in my stomach, waking me up at night it was awful. I went to urgent care, and they sent me in for a CT scan. 
The scan was normal.

A week ago Wednesday, the burning pain turned into neasous and vommitng. Ever since then I have barely kept any thing down, feel achy, weak and tired. On Friday, I went to urgent care and got fluids. I was told that if I had not kept any thing down  by the next day, to go the hospital. So on Saturday I went to the hospital from 8-1 and got fluids and  blood work. I was told it was viral. On Monday I was still throwing up so I went to my primary care, who didn't know what was going on so she sent me back to the GI. The gastroenologist believes it's viral but wants to do two procedures to make sure it's not some thing else. So on Tuesday I have to be sedated for a colonoscopy and endoscopy. 

So currently I am on day 8 of a stomach bug. Some days I am stay more positive than others. It's hard because I am used to go,go, going, and have been trapped In the house.

I don't know if I have a weak immune system and keep getting sick because of my HD, or if there is something else going on here. I'm more than ready for answers, ready to know. I am a little nervous about having the two procedures done but want to get them over with. I don't know what answer I want- don't want it to be viral because that means I have a weak immune system, but don't want some thing else to be wrong that  I have to deal with.

And there are many things that I have been looking forward to the next few days. I was planning on visiting my old school tomorrow for Halloween and seeing my old students and co- workers. Another thing I had been looking forward to for months is HDSA Education day, which is a mini convention in Boston. Then that night my cousin Chel and I were dog sitting at my sisters, and going out in Boston.

If your thoughts and prayers could be with me that I feel better tomorrow and Saturday I would greatly appreciate that.

I know today's post wasn't very positive but I had to get my frustrations out. thanks for baring with me!

As always thanks for reading,