Giving up

Ive decided to give up Drs for Lent! You should have seen my husbands face when I said that last night. At first he though maybe I didn't have any appointments for the next couple of weeks. Then he looked at the calender.

IF only I really could take a few weeks off. I will admit, things have been pretty nice lately. I am seeing my hematologist and my labs monthly. And am now mostly on 6 month visits with both my GI and the Transplant Dr. But the fun is over and its time for my 6 months visits again!

So tomorrow I see my hematologist, next week is an MRI, two weeks later is my check up at the Liver Clinic and I still need to schedule test and an appointment with my GI, based on what the Transplant Doc says. Then I need to see my primary Dr and my lady doc too.

I'm hoping that all goes well tomorrow, so that I get off to a good start! It seems like when I get bad news once, its bad with every visit. The worst I think could happen tomorrow is my INR is off. Thats always the case anyways. So maybe I will be spot on and not have to change my meds around!

All this while I am waiting to hear about my disability hearing. I'm not quite sure how I feel about it. Well no I am. I'm angry because there are people less deserving that were approved. I feel ashamed that I have to ask for help. And I am scared that I will be denied. I just hate the waiting.

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My safety blanket

There was a month last year that I had a Drs appt all but a few days out of the whole month. I remember telling myself that it would be better once I got on a more regular or monthly schedule. And now that I am, I am scared at the though.

At first it was weekly visits, then monthly. Now I am on 6 month visits with my GI, Transplant team and my PCP. I was seeing my Hematologist once or twice a month. But thanks to me opening my mouth and telling him about how I have all my check ups coming up, he decided to have me come back in 5 weeks instead of 4.

I know one might think I'm straight up crazy. I mean what is one more week right? But for some reason, It freaks me out. When I was in the middle of appts every week, I was drained and on broke. Its nice to have a breather between Doctors. And not spending $300 on copays each month is more than great. But I find myself afraid that something will happen in between my appointments and I will have no idea. If I were to run to the ER every time I have pain in my abdomen or chest, I would be there every other day. But what if, i do throw a clot and put it off. Then I have just screwed myself even more.

I tell myself that if something is truly wrong, I will know. But then I realize that Ive had the pain in my liver as long as I can remember, and always found an excuse for it. I guess its just one more thing I will have to get used to. Along with waiting for results, blood draws, meds and side effects. This is my life now. All I can do is make the best of it right?!?

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Not quite resolutions...

Last year was like a train wreck. This year, I will be putting everything back together. So instead of making a bunch of big resolutions, I figured I would write out {small} goals for the many parts of my life that need some love.

Me:

1. Take my meds, all of them, on time. And make sure I dont run out.

2. Get dressed every day in something other than my Pj's

3. Dust of my camera, take more pictures and even be in some!

4. Go to sleep earlier.  Or atleast try to!

5. Journal.  Blog.  Write.  I used to do this everyday.

The boys:

1. Spend more time playing together as a family, mostly outdoors

2. Get on a normal and regular sleep schedule. And in thier own beds:)

3. Eat healtier. They dont eat horrible, but it could be better

4. Make friends. We are a shy family.

My Marriage:

1. Get out more, alone. And not feel guilty about it.

2. Find time everyday to talk about what ever needs talking about

3. Be more patient with one another.

4. Loosen up and joke more. Laugh together!

I do have some bigger goal that Id like to reach this year too. This year I will learn how to drive. Yes people I do not drive. Nor do I really want to learn, but I have to. I will also find a way to help with finances. Afterall, even though I didnt ask to be sick, the bills are almost all mine!

And my dream goal of the year, is to get our own place. Somewhere all our own, where we can do what ever we want to do and the boys can just be free to be boys. Hey a girl can dream right :)

So there you go, my goals for the year. I think they are all for the most part pretty easy.

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Where are you Christmas?

Its just not feeling like Christmas around here. The tree is up and there are actually presents under it. We made gingerbread boys and girls and will hopefully decorate them tonight. Still need to make some cookies for Santa. Im hoping to get downtown to see some lights tonight or tomorrow too.

Yesterday I was denied again for disability. I have thousands of dollars in medical bill waiting to magically be paid. Maxed out the credit card...on more medical bills. Was going to make Christmas dinner, but theres no money for that. Plus MIL is making tamales. This will be the first year ever that I don't have a real Christmas dinner. Depressing much?!?!

A lot of it comes from our living situation. Dont get me wrong, I am more than thankful to have a roof over our heads. But its not home. The kids get in trouble for doing things that kids do. No running, screaming or jumping. We cant parent the way we want to because the grandparents always step in. I feel like I am always scolding the boys for things that really don't bother me, but I know the bother the IL's.

Before I got pregnant the plan was to learn how to drive and get a job. I was ready and pumped. Again not complaining just stating the facts ;) Then I was diagnosed with BCS and Factor II and all those plans went out the window. Dr said no driving. My meds make me sick, but if I don't take them its worse. I'm beyond exhausted, but I just have to suck it up and get on with life. I don't see how working outside of the home is possible for me. I will need lots of time off for tests, appts and surgeries. Cant sit or stand for to long, so Ill need lots of breaks. Because of the toxins in my blood I cant focus for nothing. (Its been an hour of typing and this is all I got) So working with money is out. And the biggest thing is that I cant drive, so I cant get anywhere. Lord help me if I had to take a bus, Id get confused and lost! No joke. I get lost in Walmart! But I know the bills are not going away, and they will keep coming so what the hell am I supposed to do?

It makes me sick to think that I'm dragging my family down. Because of my medical conditions. We will never be financially secure. We will most likely never own our own home. No private school. If my liver doesn't kill me, this guilt will.

But right now, my family is healthy and they know how much I love them. We sleep in our own beds at night and always have something to eat. We have family and friends that support and love us. There is always a good side to everything. I will hang on to that with my life.

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Its a date!

Well I met with a surgeon yesterday about the lump in my neck. My nerves were shot going in there. I dont know why. I was more calm when they were telling me that I was going to have a liver biopsy...though my neck. Atleast this time, there will be no wire being threaded down my jugular, though my heart and into my liver! But I was still a mess {on the inside}. I had the boys with me, so had to play it cool!

Anyways. At first the surgeon was not sure why I wanted it taken out. He was "pretty" sure it was just a lypoma. Which is a scary word for fat deposit. But once he got my newest images, he agreed that it needed to come out. And admited that he had no idea what it is.

It went from a lypoma, to a hematoma and is now being called a tumor. I dont care what its called as long as they get it out of my neck, or shoulder, what ever you want to call that area. He did say that it is IN my muscle, so that complicated the surgery, but that he could and would still do it for me. We went over all the risks and he said that there could be some muscle and nerve damage but it was rare.

I went down and got registered and did all my pre admissions paperworks and labs. So now all I have to do is show up on the 30th at 6 freaking 30 in the morning. And ofcourse, I have a whole list of instructions to follow prior to then. Im relived its finally happening, but afraid of going under again. And it looks like David wont be able to be there again, which makes it 10 times more scary. Waking up, alone after surgeries, is shitty. Its nice to wake up to a face and know everythings alright. And its so much easier to close your eyes, knowing that he will be there when I wake up.

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Yet another Dr

Today I was referred to a surgeon. My hematologist says that the best option for me would be to take the mass out and then biopsy it then. As opposed to just taking a biopsy and then deciding to take it out later. But he did say that he didn't think it was cancer. But again the only way to be 100% is to take the thing out.

So now I am waiting on a call from the surgeon to see when we can get this show on the road. If I could have a lump free Thanksgivings, I'm game! I will have to stop taking my coumadin, which scares me. When I forget to take it I am always afraid I will get a clot. Not having to remember to take them though, will be a nice change. But if I am off of them Thanksgivings week, then I will really have to stick to my diet. If you can call it that. Nothing green. Stuffing is out. And as long as MIL doesn't put any on the turkey, I can have that. And mash potatoes, which I could really care less for, but beggars cant be choosers! Maybe I will make sweet potatoes. Deviled eggs?? Never mind, that would be to much mayo for me. At least I can have cranberry sauce and pies. Thank God for that!

Getting my mind off of food. My INR is at 2.3, not to bad. I was expecting it to be higher because I'm bruising. But I guess not! Either way, that's good enough for me!

Until next time :)

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