Doctor time

Yesterday I had my appointment in the city with my dr at the transplant center. It was just a long day. I had to be up at 5 for the train at 6:50 all for an appointment at 9am. Train was fine. My dad picked me up at Secaucus to drive into the city. The bridge was crazy! We reached it around 8 and were stuck in traffic forever! Finally got to the parking garage at 9:30. I called and said we would be late of course. Luckily we made it up to his office around 9:45. 

The appointment went well. Of course he had to say something about us being late and even when we said why I was told he suggests his NJ patients try to get later appointments. :/ I did try but his staff is horrible. But I didn't say that. 

My blood work was fairly good. About the same as my last test. So no improvement but it's not worse. 

My mri was good. No cancer. No fluid. 

I explained my forgetfulness and confusion, headaches and exhaustion. All which he wasn't too concerned about. It's all fairly normal. 

I then explained the pain by my liver and spleen and the discomfort it causes waking me up, and how I feel it bulging, he had me lay back and felt around. Says otherwise feels it and that sometimes when you know something is wrong you 'feel' pain... Figured this would be my answer. So I just said 'it's not serious then?' And he said no. So I'll take that. 

Overall he was great. I'm learning how he is so its easier to handle. We decided I'll start a schedule. Alternating every 6 months between him and my other dr here in jersey. Every 6 months for an Mri as well. Every year an endoscopy unless I begin to feel pain or cough up blood. And I am going to try and get in the best shape i possibly can because that could help as well. He also believes if I can stay on my current medication - azathioprine and inderal without any flares that I will be able to stay off of predisone. He also believes if medication keeps working and I stay as I am or improve there is a very good chance for no need of a transplant. Ever. !!!!! 

Ok excitement over because I want to be realistic as well. He then went on to say of course of it doesn't work I will most likely need one sometime in the future because progression will result in death without one ( his words, I'm not exaggerating here) which we all don't want ( again his words! But def true) 

Last night was bad though. I began having the discomfort across my liver and spleen, which turned into pretty bad pain to the point I couldn't even tell if it was that or if I was getting really sick like a stomach bug, it caused nausea it hurt so much. I was even shivering but had no fever. I just got comfortable and slept all night in the same position. Today it's better but I feel worn from the long day. If that happens again I have to call my dr and get him to understand. 

I have hopes of staying the way I am. I feel horrible but if I can get in better shape and listen to my body and really stay on track and give the medication even more time who says a year from now I won't be in a better situation? I can work toward that atleast and if it goes another way then I will handle it as well. 

I've been very unhappy the past few weeks and it's starting to show. This appointment helped and I think will help turn my attitude around for now haha. It's difficult sometimes. I know how fast things can change. But I am hopeful. It's the only way I can live without being unhappy all the time. 

A girl I found online a while ago through cirrhosis sites I've been following her journey, I just found out she passed away about 2 weeks ago. Finding these things out is so sad and really affects me personally now since I have a direct connection but it does make me want to fight even harder. Not because I don't want to die but because I want to be a success story for others who become sick so they will fight as well. The girls I've known who passed from cirrhosis both fought and it unfortunately turned out badly. But I know when I came into all this that is all I saw. An end result of death. And while it's very likely it doesn't have to be. I'm very thankful I seem to have a good shot. I'm very thankful to my drs as well. 

Boston

Well I forgot to update :(

Boston was fun! I was up at 3 and we left by 4am. Picked up Miguel and Felix and his friend Melanie. I loved the drive. I don't know why but sometimes I really like road trips. Through jersey up to the city, over the GWB, we passed dr. Browns office haha, literally. Saw the building. Up through Connecticut, passed a Yale building, I thought that was cool. Haha. And up to Boston. Just walking from the car into the convention center I was done! I kept telling my body to not pull any crap. It listened :) 

It was 8:30 by the time we got in line. They didn't open until 10! Ugh we stood in line, sat in line, they threw around beach balls for people to hit around. It was tiring but fun actually. It was mostly video game stuff. Nothing I am into or understand but the guys loved it and I like being a part of it. We did come across a competition between two teams playing Halo. It was cool. It was taped and put on TV or the Internet. We sat in the audience and got to see the game being played on a huge screen above the teams. 

Had no idea what was going on but it was exciting haha. 

We then decided to leave and walk a few blcks to the train station to grab lunch. Closest food options. The food at the convention was crazy. I got a pretzel and a soda and it cost me $8!! 

We went back for a little and then left to head home around 2. So much traffic! Home by 7:30! We were so tired. It was nice though. According to my tracker on my phone I walked 6 miles that day. That was much needed haha. I would go again. Things like that are still fun when you go with friends and are open to enjoying   something different. 

Things have been ok since then. Feeling about the same.

I received some stuff back from disability. Packets of forms to fill out and a letter saying I have a phone interview in April. I filled everything out and mailed back aleady. I hope getting everything fast and getting an interview is good news. I could use it. 

I go to dr. Brown  this coming Tuesday. I've had a bladder infection the past few days. I got over the counter meds and it helped. But I forgot to finish it and it's back today :(. I'll finish the meds this time. I can't get a kidney infection that would be bad. 

I think this weekend Marqui and I are going to the movies. The second movie to Divergent is coming out and we really like that series, I'm reading the books, so he said we will go see it. It's also spring on Friday! 

Alright. Pics time. I didn't take too many :/ 

:) :) :)

I feel like a kid. I'm so excited! Tomorrow I am heading to Boston for the first time super early. 3 am early. All for the PAX convention. 

More Marquis thing for sure. But he asked me back in November If I wanted to go. I said I did but not to get me a ticket because with being sick and out of work I, 1 was broke and 2 didn't know where I would be months from then, in a hospital, surgeries etc. 

So I remembered this past week that it was this weekend and mentioned it and asked if that meant he would be gone all sunday. He said yes and that was it. 

Yesterday he took me to lunch and out of no where he says 'you know your coming to Boston right?'  No! No I did not! I was so excited. I can't believe he got me a ticket anyway. So sweet. They have all video game/anime stuff. Even though I don't know any of it it will be fun still. I went to one in jersey about 3 years ago with him and it was fun. He says this one is 100 times better. First we have a 4 hour trip. It's going to be a long day and I hope I feel well. I'll probably have lots of pics coming! 

Kids and kitty

I saw my boys!!!! The kids I nanny. I babysat them this past Saturday. It was so good I missed them so much! 

It was like nothing changed and I had just been there. I rang the bell and I see Liam and Evan on the stairs and I hear 'miss Brianna look I have books' and they kept talking. Before I was inside haha. 

Once in, Evan tells me he is now 5 and a half and in kindergarten, incase I forgot, and Liam tells me he is 2 and was a baby before. Adam comes over and says hi as well. I immediately have to look at books with them, Liam has changed! Evan and Adam are about the same as a few months ago but Liam talks up a storm! Full conversations, big words, he is so grown up. Their parents go out and we watch Big Hero 6 ( for the 2nd time haha, I went to a private screening with them before I left). Then it was time for bed by 10. 

They did so good and I was so happy to see them. They asked me to come back. Of course I will as long as they need help. 

Their parents were back around 12:30 and we talked a lot about everything going on with me. They are so great. So understanding and caring. Telling me if I feel at any point I can come back to work that we can figure something out so I can come back. That made me feel really good and appreciated. I told them any time they want a date night to let me know and as long as I feel well enough I will be there! 

I was pretty worn out from doing that. I decided to keep my energy up and the past few days I've been cleaning and organizing like crazy. I feel ok for the most part. Which worries me and makes me want to change my mind and go back to work. But I know when I crash I crash hard. My headaches and dizziness that comes with it is nothing to mess with and I sill need a lot of answers from my dr to know how severe everything is still. It just makes me a little restless being home. Plus I think I'm just having a good few days. This happened just after my almost splenectomy too.

I finished my disability application and got that sent out. So much information to go through but I was able to fill it out pretty well. I have to mail in a few forms and I'm all set. I can check my status within 5 days even while they are waiting on some information so hopefully in 5 days I can see things being processed. Im hoping everything goes through smoothly and quickly. I know it's a long shot but this is a serious case so I hope that I guess it 'benifits' me. 

Maybe next update I'll have some news about that! 

Oh. Random. My cat has been doing some random, silly things. So here's some pics just because :) 

This is how she always looks at Marqui. She's obsessed. 

Just things

It's been a while. Not much new to report but I figured I should post something. 

I've thought about doing so a lot lately, but I haven't been feeling well. I've had headaches every day for months. But recently it's been horrible, like the past 3 weeks. I can't even open my eyes all the way. I'm trying to get an earlier follow up with my dr. My appointment now is for March 24th! 

I did however FINALLY recieve my blood work prescription today that I was suppose to get a month ago. So I will be doing that this week. I'll also be finishing up disability and getting that going. I've been waiting on my w2 and I should get that Tuesday. I'll be happy to have all that sent in. I really hope that it goes through and quickly. I really need some income and working right now scares me. Specially with these headaches. I can't even concentrate with it. I'll see what happens. I have plans and back up plans. But of course the easy way would be the best way for all this to work out. Specially after a year of difficulty. 

I've also noticed I've been getting an ache, I guess, not really a pain, feeling where my liver is and when it happens I feel as if it's swollen. I can rub my hand over the area and feel it slightly raised. Don't think it means much. It's just interesting. 

I've be thinking a lot lately about everything. How I feel. How sick I really am. Some days I feel ok. And others I feel horrible. Haven't had a great day in a long time. Probably since before my knee went out over a year ago. I really see how I've declined. I know it could be way worse. But it does worry me. How will I be in 10 years? 20? Even a year from now. So much can change and happen. I don't think I will really improve much. There's not much I can do besides what I'm doing, medication and all that. But will I remain the same for a long time? Get worse? I don't know. It does make me anxious and a little sad sometimes. I'm still really hopeful for my future. I guess I thought of all this because the other day someone said 'your doing ok and your out of any danger now' or something similar to that... Hard to remember sometimes :/ 

And it got me thinking, just because I'm not laying in a hospital or having tons of tests doesn't mean anything. I'm not ok and I really won't ever be. I'm extremely sick and just because I don't look it or sound it or whatever doesn't mean 'oh I'm good now!'  And I'm not trying to make myself sound worse or make people feel bad for me. It's not that at all. It's just the realization I have finally come to that I am sick. I am not healthy. I never will be. I won't get better. My liver is shot. My spleen is a mess. My spine is a nightmare. And that's that. I'm on meds to hopefully slow or stall progression but it's not a miracle. Trust me I wish it was. And I'm ok with all of this. It's funny when it all started, I use to get so scared of getting cirrhosis. Then once I started getting sick this year with each new thing I would get scared. But some how each time I would just get past it and be ok with it. Thinking about it years ago I didn't know how I would handle it. I still don't know how I'm so ok with it. One day it just stopped being so scary. I almost felt a calm come over me and I knew the situation and I was ok. Yes I still have moments or days where I get sad. But I tell myself it's ok and then I feel better. I even look at my wrist now and see 'fearless' and I immediately feel like I can get through it all. I love that. That was exactly what I wanted from it. 

Well this turned into total rambling. I guess that's good :) 

Oh! One thing I don't think I'll get use to - now that I have to tell people ( drs mostly) that I have cirrhosis. It would really be nice if they didn't get a look of horror and assume I'm an alcoholic or drug addict before letting me finish my explanation. I hate seeing the look on there face and having to say.. No, it's autoimmune. I need to get use to o saying autoimmune first. But really I should be able to say it how ever I want to without assumptions. But I understand ... Still annoying though :/ 

Ok. That's all for now. Off to bed ! 

It's been a while

Not much happened since my last post. 

My follow up on the 2nd was cancelled due to bad weather. 

Yesterday I went for my breast ultrasound to rule out a cyst/cancer/anything. All good. Still not sure why I have some blood discharge but I'll see what my dr says. 

Today was my second endoscopy. I didn't even know I had it until yesterday. I called to schedule it and I get told they have (supposedly) been calling me because it was scheduled.... No calls and I didn't schedule it, so how I got the appointment I don't even know. 

It wasn't too bad. Mom took me and Marqui waited with me as I woke up and took me home. 2 veins banded again but they were smaller so not much pain. Just a strange feeling. I also don't need another for probably a year. That's good. Well not much to report otherwise. I'm really just worn out from it all. I'll update soon..

Fearless

Today I had my MRI to check for fluid in my abdomen and liver cancer. No results yet but I should have them February 2nd. 

I went to the city with just my dad today. Told mom she didn't have to come since I wasn't seeing a dr or getting results. 

Turned out to be a good day. 

I've been wanting a tattoo for over a year now with all I've gone through and something reminding me what my friend Jamila has taught me and what this year has taught me. My dad wanted to take me and get it for me. So we went and I did it. I am so happy. I love it. I actually teared up as he wiped it the final time. 

I thought of this idea over a year ago. And I kept saying 'once I get past this-' or 'after this surgery I'll get it' I always used it as the 'end' gift for myself. Well as we know there is no end to my health problems. But I am past all my major hurdles as far as I know.... For now. So it was time! 

I went to PHysical Graffiti where I did my first tattoo and my piercings. I looked online and found the guy I wanted to do it. I'm so glad I picked him. He is amazingly talented and I recommend him to anyone who asks. He was very nice and gentle and we talked during and he said how he loved my idea and how it is a very powerful tattoo. That was cool. He was young probably my age so it was easy to feel relaxed. 

Now for the pictures... I have a lot to say about my tattoo but I have a huge migraine so I'm showing a picture of what I wrote on my Instagram site.... 

This was seconds after he finished while I was still sitting in the chair

I love it so so so so much. It is beautiful and I will see it everyday and remember to live life no matter what. Go for every opportunity, be myself, be silly if I want, have fun. Be happy. Be fearless!