I am clearly not very good at this blog thing. I have not given an update on here for a long time. I will try to be better about this! Since the last time I blogged medically not much has changed except I am totally off my pain meds. Which is pretty exciting. I just decided the last week that enough was enough I want my life back, and I weaned myself off of them with the help of my mom. It was not easy they are right about how addictive they feel to your body but I want to be able to drive, and have a glass of wine with my friends, and take a step closer to independence so I used that to be able to stop. The pain doctors were really impressed so that was pretty cool, and they said they are pretty much done with me unless the pain in all of my joints does not go away. They recommended I “urgently” see a rheumatologist because all of my joints hurt. Like down to my knuckles and toes all of them hurt. So I am working on that currently. As far as other things go I think I have caught a stomach bug, I have been really sick all day starting last night. But hey, on the bright side I walked around a store today without my crutches!!! I was also out in the sun without it burning to the point of tears! Two good things outweigh the bad today and each day I am getting stronger and stronger. Backing up though, on Wednesday I went to my amazing aunts house for her birthday where we all had dinner and cake together. My Dad drove all the way down here for the night Monday to take me to my doctor’s appointments Tuesday (did I ever mention how amazing my parents are?) which was so fun. We spent the day together and went to the grocery store. Also, when I was at my appointments this week I used my crutches walking all around the hospital which is a very long trek. So that was another accomplishment. Then Thursday I saw the pain people and that leads us to today where I walked without my crutches, got a stomach bug, and melted in this ridiculous heat. That is all I have to report right now. I will try to get better about keeping this current!

I am not even sure where to begin. This has been one of the best weekends I have had in a long time. I got to not only spend tons of time with my family but we went out and got to do so much! On Saturday we started the morning off like old times. When I used to live with Dan and Purvi my aunt and uncle, we would go to this bakery called Perfectos on the weekends and get coffee and muffins whatever. So on Saturday I bugged Dan to go, and we had SO much fun. We all got breakfast and coffee and just sat there like old times. It was seriously awesome. Then we went home showered and I decided SJS is no longer in control of me. I put on one of my favorite dresses, put on makeup, put on my new shoes, and off we went in the car with Purvi and the kids headed to pick up Ruby and drove to the aquarium. I have never had so much fun there. We went around to all the exhibits and saw all the aquatic life we have all seen before but it was like with renewed eyes. My little cousin, Anika, kept making sure that I had enough room with the wheel chair and the other girls had fun helping me navigate too. I swear I smiled the whole time I was there! After we went home to a steak and salad dinner cooked by Tommy and my uncle Dan. We chatted until I was almost so tired I was sleeping and went home to bed.

On Sunday we slept in a little and then decided to go to Maine to see the new house and to go to my my dad's side of the family's favorite breakfast place’s  Amore Breakfast. So off we went, Mom, Tommy, Ruby, and I to go get breakfast. We had a great time on the drive talking about the house and planning stuff. Then we got there had a little wait and then had breakfast. I had lobster eggs benedict which was as always amazing. After we finished breakfast we went to my favorite place in the WHOLE world other than Burke Mountain. Moody Beach. I was able to walk on the beach for a little bit, thank god for the rainy day there was no sun. We did take some pictures but they are not very good so I don’t think I am going to post them. But just getting my toes in the sand of that beach was healing for me. We stayed there as long as my skin could stand and then off we went to sign some papers for the house and then headed back to Massachusetts. We got dinner at the Chateatu and then came home and I went to bed. Seriously, perfect day or what?

Today was really relaxing. I have cut my pain medicine in half now so I really needed a day like this. Recectnly I have really been struggling with pain, I am constantly in pain all day everyday. But instead of taking any pain medication I have been trying to medicate with friends and family which try as I might isn’t working as I planned at the current time. SO, I am waiting until Thursday when I have an appointment with Pain to see what my options are. Anyway, today I relaxed and then went to the movies to see the Great Gatsby with Grammy and Ruby. I was not a huge fan but we had fun. After that I went to Dan’s for dinner and now am sitting at home writing the blog and starting my thank you notes. Pretty fun night! So that is the scoop on my end, had a pretty amazing three days if you ask me huh? I am one lucky girl. I have a new challenge. Take one day this week when you wake up feeling like meh this is a really crappy day and do what I did. Dress your best, wear your makeup (or not), and grab your confidence and totally take control of the day with a smile and a positive attitude. It was so empowering to do that for me, and did I ever take control of that day! Sometimes all it takes is one small change to change everything else. Give it a try, what could go wrong?

Today has been such a great day. Well let me back up, yesterday was a great day too. I went to lunch with my friends from work Rebecca and Shanna to this place that was amazing. Shanna drove us to North Reading to this cool new place. We all got burgers which was awesome since my mom is on a vegan kick. After lunch we went and got ice cream and got to catch up. It was so nice to sit with them and just act like a normal person again. It made me forget what was going on medically and everything. So thank you so much you two for making my day so much fun. After I spent the night with mom which was awesome, as much as I love Tommy it is nice to have some Mom time. I went to CVS ALL ON MY OWN with mom waiting in the car. I was able to finagle my way around inside getting things with my arm crutches and holding onto things so I could pay. It was awesome! Then we went to whole foods where I proceeded to drop numerous things on the ground including my arm crutch once when dad called. But hey I am learning how to use them still. So we went to whole foods and got stuff to make this vegan pizza (gross) but it was actually pretty good! Mom did a great job. Then I sat with grammy and mom and talked for a while which was really nice. We talked about some possible plants for me for the future like where I am going to live and whatnot. Pretty stressful stuff so I am taking it one day at a time. We did have a little medical issue yesterday that still has not been resolved but after talking to the doctors hopefully it is nothing to be worried about. But it was pretty scary.

Then today, mom was gone all day so I spent the whole day with grammy pat. My one goal of the day was the make two people smile. That was it.  I have decided to take on a new thing each day to make the world a better place. That sounds so cheesy as I write this. But after this experience I have realized that I have been given a second chance, and with this I am going to help change for the better what I can. So I am starting small. My first smile was when I saw my cousin Livvy when she got home from school. She was so excited to see me when she came through the door. The other was when I was trying on shoes today at Macy’s the woman who was helping me (Donna) was asking about the henna on my feet. This conversation always leads to my SJS because of the scaring on my feet and legs, and this was no different. She wanted to hear my whole story and then after she hugged me and smiled and told me some encouraging words. It was so cool. A complete stranger wanted to hear my story, which I made sure to say I would never have made it through without my family and friends. I think about my life right now and seriously, I want to do whatever I can to share the love and joy I feel daily from everyone. Anyway, grammy and I went to the Salem Mall and I returned something and we went to a few stores. We got lunch and then went home. The most important thing from this is that I used my arm crutches the WHOLE DAY! I walked up and down the mall twice! But I am certainly paying for that right now. Every muscle in my body is shaking when I stand and even sitting here typing my arms are exhausted. But the way I see it is that the further I push myself every day the quicker I get better. Or something like that right? After we got home my friend Laura came over and hung out with me for a while which was so nice! I am so lucky to have friends that will come and see me like that.

Have a great night everyone, depending on what happens tomorrow I will blog, if not I will blog Saturday. I love all of you, take my challenge too. Make two people tomorrow smile. For no reason at all, pass it on. 

May 21st

Today I had a ton of doctor’s appointments. It was so weird to be back at the hospital not in the hospital. It was a long day but hey it’s over. 

Derm told me that its going to be 6-9 months before my hair and my nails stop falling out, and until the weight from the steroids come off. For those of you who don't know, steroids cause you to gain a lot of water weight, and I feel incredible huge and bloated (whale-ish actually) as a result. I'm really sad to hear how long it will take. Because of the newness of my skin I can't be in the skin for a year, and that became obvious today when I got a sunburn just from walking from the car to the doctor's office. 

After visiting Derm I visited my primary care doctor, who I want to do a special shout out to. I forgot to mention her in my blog post yesterday and she has been absolutely AMAZING. She visiting me almost every single day in the hospital, and treated me like I was one of her children. Seriously, she is the best doctor I have ever had. We talked about my lungs, and decided to get a chest x ray to check things out. She thinks that it is probably still just the pain meds. We talked about my joints as well, and decided it would be best to wait two weeks and see what happens with them. 

I visited OB/GYN next, and they weren't super helpful because the treatment there is to 'stay the course'. Everything is healing slowly. They did sympathize with what a horrific experience I've had, especially as a woman. 

Caroline came for dinner tonight and ate with Mom, Tommy, Grammy, and I (Grandpa ate on his own earlier in the day). It was so good to see her, it's been a long time!! I got to snuggle with Ash and Pepper too, which totally made my day. Tomorrow I am going on a lunch date with my coworker, and I am thrilled to have the opportunity to get out of the house and visit with a friend!