Wednesday, June 7, 2017

moving musings

As I write this I am procrastinating the last pieces of packing that should be taking place.  Everyone does this right? Wait until the very last minutes to finish packing, be it for a long vacation, weekend trip or…move across the country.

This move is a big one for me, yes I’ve moved around a lot, as a child internationally across oceans with my family, then off to college, numerous apartments and then due to Myelodysplastic syndrome d5q I moved back to Houston for medical care. But this move, this move signifies so much more and is probably the hardest move I have ever done. I was so ready to leave for college when I was 18; I couldn’t get there fast enough with my two rolling suitcases! Moving throughout my childhood was just what we did but this move at 29 after my transplant seems to be much more difficult than any other.

Don’t get me wrong I am excited to get back and re-start my professional and social life in the city that I love, but I also realize more than ever what I am giving up for this restart.   
I will miss the random lunch dates I have with my mom, dinners at our favorite places or just hanging out knitting and sewing the day away with her. I will miss going to ballet class with my mom. I will miss heading to a new barbecue joint with my dad, and just the ability to hang out with them on the whim, no plans, no need to schedule a visit.

I am so grateful for everything that my parents have done and continue to do for me throughout this crazy, whirlwind of a journey and these next steps I take to re-start my life.

Thursday I embark on my road trip up north and it will be a bittersweet ‘bye for now’ to Texas. The amazing part is that I get to say goodbye, my health is good enough that I can go and return for check-ups quarterly.  I have waited for this day since I returned back to Houston 2 ½ years ago, it seemed so far away that there would be a day that I could leave and feel healthy, and comfortable enough to return back to Philadelphia. It is surreal looking back on the time I have spent in Houston and realizing that this time to take life back and move forward is here.

Thank you all for your continuing support on my journey and for my parents. Here’s to a new adventure and restart to life.

Thursday, March 30, 2017

It's been awhile

Lots of things to update all of you wonderful people about. First, a big news medical update. Guess what? Seriously guess what I no longer have to take.

I am completely off all of the billions of medicines I was on, including the major one that suppressed my immune system so it would get along with my donors. Now I only take vitamins in the morning. I am still on one medicine as my levels continue to rise but that is a breathing treatment I do once a month - so not a big deal. I have been off of all the medications for a little over a month and things have been going great - no hiccups yet! They watch you a little bit closer after you come off of the immunosuppressant because this is the time that things could go awry and my body could decide it doesn't like my donor cells anymore. But so far so good over here.

The one thing that I was warned about has happened - although it is not the worst thing in the world. Excema! I was told that coming off the immunosuppressant would make my excema flair an oh man has it. But if that is the worst of it, I can survive a little itching and bumps until my body sorts itself out completely.

It has felt really great being of all of the drugs that I was on. My energy seems to be returning to a more normal level as I get further and further away from the meds. I have started to dance again at my old dance studio I used to attend in High School. Not only is it a blast but great for my lungs as they try to reach back up to full capacity.

On to the next piece of news I want to share with all of you. I  was waiting until it was completely official.

I FINISHED and GRADUATED from Drexel University with my Master's Degree!
I can't believe it's done, it actually worked out and I was able to finish my Masters of Education.  I started the program 7 years ago and left about a year after I started, unable to balance all of it. Then as I was recovering I decided to look into using my time wisely and attain a master's degree. I checked with Drexel and I was able to jump right back into the program that I had started years prior.

All of this news is leaning towards a life of a little bit more normalcy. Hopefully a move in the somewhat near future back to the city that I love! With that move real life starts to come into play more and more and that means the Job search must begin! So all you Philadelphian's I am asking for some help here! If you know of any jobs (with health insurance 😉) let me know.

I am so excited to keep this positive momentum moving forward and to see what happens next!

Ps my cheeks are totally back to normal - no more chipmunk face

Saturday, September 17, 2016

World Marrow Donor Day

So what you ask brings me back to this blog after so long. I will tell you, probably the most important person ever to exist, my DONOR. Today is World Marrow Donor Day and I wanted to take this opportunity to thank the amazing women that donated her stem cells (bone marrow) to me over a year ago. The process isn't quick or painless for the donor but is something you can get past easily and well you save a life. It is as simple as that with out my donor I'm not sure where I would be today.

My donor saved my life and there are not words in this world to describe how much I thank her for doing that. I think of her daily and how she chose to help someone across the country that she did not even know. I know that I am not just thinking of her daily, and of course sending her all the positive vibes my body can send but that many of you have thought of her. What a courageous and selfless person. I hope that she continually feels positive vibes her way for saving me. 

I also want to take the time to thank all of those that have registered on the bone marrow registry! For you so many people are thankful and you may get that call to help save a life and I hope you help. I hope to help register as many people as possible as a way to pay it forward for my transplant. If you haven't registered, it is super simple just click here and follow the directions. 

A quick update in my world and I will post more later, but I have recently come back from a 6 week trip up north and cannot WAIT to get back in a month for a few weeks. Unfortunately, I came home with remnants of a rash that just will not go away. I have a ton of steroid creams and will find out what exactly it is in a few days when the biopsies come back. (Yes, they took two small punctures out of my skin - really fun!). Besides that I remain on my immunosuppressant and all the fun antivirals and antibiotics that come along with it. That means 17 pills a day a huge improvement from what I used to take and well 9 of those are magnesium vitamins (so they don't really count). 

Lastly, please send some positive vibes to my donor on this special day to celebrate her! 

Monday, April 11, 2016

hey hey

Hey all! I thought an update was due and I am going to try and get better at it! Things continue to move in the right direction and I am completely off of the prednisone steroids and have been for about a month or two! WOOOHOOO so here is a fun during and after steroid pic! (the cheeks still need to go down a little bit but its slowly happening.) Oh and also there is hair! Weird, strange, mad scientist hair but hey it's hair!

Benefits of my WACK-O hair

1. Shampoo and conditioner last me forever 
2. It looks like I have "normal" hair if I wear a hat
3. No matter what I do it looks as beautiful as above everyday
4. I  don't have to brush it - that actually makes it worse
5. It actually grew back 
6. My scalp can still get a suntan!

I hope you are all enjoying your Monday! Have a great week and hopefully it will be less than 3 months before I update again!

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