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

Friday, January 8, 2016

whats happening

This holiday season was definitely a fun filled, family packed one and I am so happy that right before it all began my energy levels come up.
See here is the thing. It is really a love hate relationship with these steroids I was put on back in June (or was it July?!?!). No one tells you, I guess maybe you are supposed to just know, how much energy and how great being on 90mg of prednisone feels. Remember those posts where I was waking up at 5am and doing six bajillion different things throughout the day. My room was spotless...those were the days. Well the whole point of the steroids was to get rid of my Graft vs. Host rash and well 90mg of steroids I think will get rid of basically everything, including I now found out your bodies on production of natural steroids. So slowly....very very slowly they have been reducing the steroids and for a while it wasn't that big of a deal. It would take my body about a day to adjust and then I would be back to what seems like the normal now.
Well, right before the holidays and literally weeks before a friend came for a visit they cut them back again. No big deal right. WRONG. My body decided to just implode basically. I stopped eating (bye bye 10 pounds), was fatigued as all get out and just basically didn't feel like moving or doing anything, nausea of course made an appearance and life was not looking fun.
I was starting to feel guilty that my friend was coming to visit and the holidays were coming up and I was just going to be this teeny tiny lump on the couch the whole time unable to do anything.
But a visit to the doctors and things started to perk up. They gave me another steroid (I thought I was suppose to be weaning off of them!) that would help with the nausea, so that I could eat. They think I may have a small Graft v. Host of the stomach but in order to confirm that they have to stick a tube down your throat and pinch off a piece of your stomach - so I'm trying to avoid that at ALL costs. And I went back on acid-reflex medicine.
And just like that after two weeks of feeling like I could barely walk around the block my energy level was back up - (it really helps when you can eat!)

So all of that is to say I am a wee bit nervous about my next doctors appointment. The next logical step in my mind is to finally be taken off all the prednisone which means I might have another cycle like the one above... So here is my forwarning if I go MIA after next week. Also I think I'll invest in some reading time. A favorite blog of mine just posted about this book, When Breath Becomes Air, her brother in law wrote about facing his death. Looks like an interesting read, not necessarily a mood lifter.

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