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!


Thursday, January 14, 2016

More like punched in the arms

Yesterday was a big step! And I was completely surprised by the big step that came my way. I had no idea it was going to happen and you know what I am kind of glad I didn't have the time to think to much about it prior to having it happen.
That big step was Vaccinations! I had a regular check up with my Dr. and right before our check up is over she announces that I can start the vaccination process since it has been 6 months since my transplant! My mom and I look at each other in disbelief and get excited! I'm thinking oh it will just be a shot or two and ill come back in a week and get some different ones. Nope I was wrong the first round of shots is SIX shots. SIX all at once! Well not at once, one at a time 3 in each arm but damn its like I have a little devil running around me punching my arms every two seconds today.
My arms feel like this little guy keeps giving me dead arms. AHHH  but it is a happy pain because I know I am getting stronger everyday and this step is a big one!

If you have a queasy stomach about needles don't look any further:


that's a lot of needles!

I am also pretty excited because my doctor does not want to see me for another month! Since all of my blood levels and everything look so good. I also start Physical Therapy again next week for my back pain and to help build my bones up (oh hey osteoporosis!) I love PT because its basically a personal trainer and then I know I will workout that day! 

Ok I am off to let my arms rest! Happy Thursday







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