love my job

So the boys have been asking lately if Marqui will come play with them. Marqui is soon to be 28 and the only 'kid' he really is around is his nephew. He is great with kids, really, and wants his own someday but right now they are not his thing. 

I figured I would ask. Surprisingly he was all for it! So I packed the car with the boys, scooters, roller blades, a basketball and football and we picked him up and headed to a park. They were a little shy but not too bad. The oldest tried so hard to hang out with him but was so quiet! They played some basketball, sort of haha. The two youngest just thought it was cool he was with us. 

It was a lot of fun actually. And after we stopped for some ice cream on the way home to have dinner! we break the rules sometimes :) 

It was a really good way to end the week. They had fun and thats all that matters to me. 

Doctor day

Thursday. Dr day. Marqui was home today so he came along this time. He hasn't met this one yet haha. So we began to check my platelets - drawing blood- of course we have problems. My veins are the worst. He is really good and getting me usually. Today though he was happy he found a good spot and then it was as if my vein disappeared. He was able to move the needle around all different ways ( yuck I know ) and nothing :/. Moved to my other arm. He was looking concerned. Said he was losing confidence today in getting a vein. We joke with each other so I said 'oh come on? With all the different tries and sticking and poking you have done to me?' And he laughed and told me to shut up. Haha. It really helps having a dr who is caring, concerned and can joke around. Finally we got it in my hand. 70,000 today for my platelets. I need at least 100,000 to be on the right track. 70 is higher then last time. But being on steroids should make it normal. So I'm still not responding. 

Last time he mentioned a shot, injection I found out today exactly. Rituxan. An injection I would get once a week for 3 hours a session. He had the girls call my insurance to check if I would have some coverage because it's very expensive. To which I found out today to be about $5000-8000 an injection depending on the dosage. That's ridiculous. BUT my insurance will cover it!!!!! Finally some good news :) 

So in the meantime while waiting for it to come in he is increasing my prednisone to 60mg a day in hopes I won't have to do rituxan. Although we know that's probably not going to work. I go again on Thursday, that seems to be my set day! And if I am still low I start my 3 hour treatment session. 

I also asked him today about a blood transfusion. A friend of Marquis, my friend too, offered to help me and donate. Unfortunately with ITP my body will destroy the new platelets before I finish the transfusion so that's not an option. It was amazing of our friend to offer though. There really are amazing people out there. 

Anyway. Work has been good this week. The kids are great as always. I have a little break today and tomorrow. They don't have school because of Rosh Hashana. So since there are two of us nannies I am doing the afternoons starting at 1. That helps I can sleep more. 

Last night I helped the family by preparing a big dinner for them to celebrate the holiday. Brisket, potatoes, challah and matzo ball soup. I tried some as It was finishing up and it was so yummy! I think I see brisket for dinner one weekend soon ;). 

The kids were so excited. The 5 year old kept telling me this meant they got to eat dinner in the dining room with mom and dad and light candles and do whatever they want! So cute.

Today is rainy so I don't know what we will do. We have been outside so much. The oldest is learning how to rollerblade. Not today :/ 

Well. I guess that's all for now. :) not sure how to end this one hah maybe im not so good at this? 

Weekends NEED to be longer

I'm sure everyone agrees. But I find my weekends are shorter then most. When everyone had a Saturday and Sunday to do things I have Saturday, and Sunday to just recuperate. I have to pack so much into one day if I want to do things because I have no energy the following day. Yeah I could push it but then Monday will be horrible. It's ok though. I use my Sunday I guess as a lot of people do, to relax. Although I do just lay in bed all day and usually will cook for dinner. I guess the difference is a lot of people can decide to do nothing on Sundays. I don't have much of a choice if I want to survive the week. 

This weekend was special to me. My boyfriend and I celebrated 9 years together on Saturday. I can't believe it's been this long! I was only 16 when we started. I guess I got lucky finding the person I want to spend my life with my first time in a relationship. 

Anyway. It was low key day but very nice. We drove around in the morning. We love to just get in the car put on some music and talk and drive wherever we end up. Try to get lost and find new things. Grabbed some lunch. We did have to stop and get his brakes fixed :/. He got nervous driving. Then we finished the night out to dinner and a new place that opened. Millers Ale House. It was good! Then home for some movies :). That wasn't much and I still was so worn! But days like that usually are the best. Had no set plan. Just spent time together. It was great really. We don't see each other often even though we live together. He works from 4am to 12pm and I get home usually between 7:30 and 8 every night. By then he is usually asleep if not close to it. So to have a day together is always nice. And I felt pretty good yesterday which helps :) 

 

And now it's Sunday. I am in bed as I write this! With reruns on Netflix and dinner in the crockpot :), preparing for the week ahead. I hope everyone else had a nice weekend as well! 

On one other quick note- I think I'm going to like this. The response I've received from my first post alone was very appreciated. I think this is the start of something good :) 

Hello

I am new to the blogging world. I use to write in personal journals when I was younger but I have stopped for years now. Lately however I have been told by family I should start writing about what has been going on in my life the past year. It has been a crazy whirlwind of events- mostly with my health. 

I'm not sure if anyone will read any of this. But I figured I would start a blog about it all and if I can touch anyone with my experiences or make someone not feel alone in a rough patch in their life then why not go for it? 

So here it goes .... 

When I was 14 years old the 6 year process of being diagnosed with autoimmune hepatitis began. In short- my immune system is destroying my liver. I get put on heavy doses of steroids, prednisone and imuran. These in combo suppress my immune system. 

I find from a liver biopsy I am stage 3 of 4 for cirrhosis. 

I stayed on my medication for a while. It gave me horrible side affects and now at age 25 am off all medication. Luckily I am not as sick as I should be. Liver enzymes not great in blood work, not terrible either. I monitor it and hope I won't need to go the route of a transplant.

That is just a little background on my AIH ( autoimmune hepatitis). This blog will mostly be about this past year and here on out. 

November 16 2013. Babysitting. Having a great day. Around 9 pm I am waiting for the parents to return and the little boy is asleep. I began to feel the most excruciating pain in my left knee. Instantly brought to tears. I finally decided to try ice and when I went to get up I could not walk. I sat back down and cried. I called my boyfriend and told him 'I will cut my leg off if I have too!'  It was horrible. I calmed down in time for the parents arrival. They carried me to my car because I was so stubborn at the time and insisted on driving home. Marqui, my boyfriend, carried me inside. 

The next morning 6am I went to the ER with my mother. Sprained knee.... Yeah. Ok. 

Orthopedic the following day ( limping at this point) believes I have torn my meniscus. MRI says no. Little did I know at the time the fear I had of that was nothing compared to what I would face the next coming months. 

4 times I had fluid removed from my knee. I had pain medication that did nothing at all. And physical therapy where I couldn't do anything but get ice therapy. I had the best drs. They really all tried. 

Moving on I went to see a rheumatologist around January. All the test he did came back negative. So back to the ortho for a biopsy. 

April 11 2014 I had a knee arthroscopy with biopsy. To be told when I woke up, I had the most healthy knee he has seen :/ 

Starting to lose hope and feel like it's all in my mind I tried to let it go. One night I sat up in bed and woke Marqui, ' your mom has ms, her legs bother her, maybe I have ms'. 

Ortho agreed. Off to a neurologist. He thinks it is a great possibility. I go for an MRI. Then I get the call that changed everything. 

I have spinal dysraphism. Spinal malformations. Basically- my spine is bent and twisted from the base of my neck all the way down and it narrows and tightens  around my spinal cord. My spinal cord also splits in two. 

I finally get sent to a surgeon at Columbia university in New York City around June. He tells me I was born this way. And this is the cause for my leg problems ( I now am walking normally). He says it could get worse again. And I need a myelogram to see how much damage there is so we can come up with a treatment plan. I schedule the myelogram- spinal tap with dye and a ct scan. It is cancelled. My blood work for it shows I have low platelets. 

I see a hematologist. I have no iron I am severely anemic. And my platelets count is low. I need it at at least 100,000 I am at 86000. I run the risk of bleeding out during any invasive procedure. So I begin the first step - 5 sessions of IV iron treatments. That was fun :/ 

I also started prednisone again to bring up my platelets. This brings us to my appointment last Thursday. My platelets are still low. Another week of prednisone. 

Today's appointment. My platelets are lower then ever at 56,000. I have chronic itp. Idiopathic thrombocytopenic purpura.  I wouldn't even require treatment yet if it wasn't for this myelogram. Now I am on a 3rd week of prednisone increasing the dose and next Thursday I see if it helped. Doubtful. If not I will be getting a shot once a week every week. 

That is the short version of my year. I will go back on things as I get use to talking about it all to the world, or one or two of you who take the time to read this! Which of your still reading I appreciate your support. 

I'm not sure how often I will update. I will try for once a week at least. With all this I am also a nanny for 3 amazing boys who I love with all my heart. I'll talk about them a lot too :). They help keep me going through it all. Along with friends and family who support me. I get told daily by them that I am so strong. I don't see it that way. To me , what choice do I have? I want to overcome all of this and have the life I want. Family, house, great job and eventually go back to school. If pushing through to reach what I want makes me strong then I guess I am. I hope I can keep it up.