Shit Mr. Hubby Says...

Yeah yeah, it's been awhile. A lot of stuff happened in the last couple of months and I just haven't had it in me to write. I have had quite a few ideas on what I would like to get out, just never the will to do it. Mr. Hubby has been having a rough time. I don't blame him for feeling so depressed or wanting to sleep all the time, things haven't been that great. I am doing my best to be there for everyone and sometimes it just feels overwhelming. But the past couple of weeks, just at random moments, he has come up with some funny stuff that I made it a point daily to remember just for this blog.

We were watching the Dead Files and Amy was describing a guy she had seen who was wearing a stove pipe hat..and randomly, I said "with a button nose and two eyes made out of coal." Mr Hubby pipes in with "she is describing a man, not Frosty the fucking snow demon." I lost it.

We were watching another show, and something was brought up about King Tutankhamun and this is what followed,,,

Mr. Hubby - "I used to know King Tutankhamun."

Me - "Oh you did huh?"

Mr. Hubby - "Yeah, I was really close to him. I was his right hand man."

Me - Really?

Mr. Hubby - "Yeah they called me Tutan-notsocommon."

Me - "Seriously honey?"

Mr. Hubby - "Haha that was some funny shit right there."

  He watched The Green Inferno today. From what I understand from most of my friends who have seen it, it's a disgusting movie about cannibalism and not something I would want to watch. Well he didn't say too much about it until he turned off the tv to go to sleep tonight. I asked him as we were laying there talking about how the movie was, and he said it wasn't as bad as people made it out to be. But that it was gross, so I am kind of glad I didn't watch it, I had been warned and my stomach can't take stuff like it used to. So we were talking and the subject turned into the Amazon and being lost in it...

Mr. Hubby - "After seeing that movie, I would never want to be lost in the Amazon"

Me - "You will never be lost in the Amazon honey."

Mr. Hubby - "Hey, I could be."

Me - "And just how are you going to get lost there? You said you would never fly anywhere. Not even to go visit Kansas with me."

Mr. Hubby - "I would fly, I just won't fly at the weight I am now. And I would never fly to Kansas anyways, there is nothing to do there. You're zoos are nothing but farm animals."

Me - "Our zoos have more animals than just farm animals."

Mr. Hubby - "And I just don't see myself going to the local corn huskers festival."

Me - "I lived in Kansas my whole life, I have never even heard of a corn huskers festival."

Mr. Hubby - "Yeah, it's where people shuck corn."

Me - "Oh you got jokes. You act like I lived in some dinky town where everyone knows everything about everyone. My hometown was bigger than that. Not that I would want to go back there, the only thing back there is my ex husband and memories. From what I hear now, there is a pretty big drug problem."

Mr. Hubby - *mumbles something about it being the capital for meth heads* "Anyways, I wouldn't want to be lost in the Amazon.."

Me - "Just how are you going to get lost there? Where would we even be going to be flying over that area."

Mr. Hubby - "Brazil, Rio De Janiero. We could be going to the Olympics."

Me - "The Olympics are coming up this year, and how are we going to get there."

Mr. Hubby - "We could win the lottery."

Me - "Gotta play to win. We are broke,"

Mr. Hubby - "Okay okay, we could get lost on a three hour tour."

Me - "Where in the hell are you going to leave from here in states, on a three hour tour that would put you ANYWHERE near the Amazon Forest?"

Mr. Hubby - "FINE. A wormhole then."

Me - "And with that, I am getting out of bed and going on the computer for a bit."

Mr. Hubby - I just don't want to get lost in the Amazon and be eaten by cannibals."

Me - "Don't have to worry about that. I'll be back in a bit."

Mr. Hubby - "But I'll miss you."

  There was some other parts of the conversation about me not having a passport and us arguing about the plane crash. Me arguing that besides crashing, the trees would further tear up the plane, and him arguing they would cushion our fall and we would live. Some of the conversations we have just floor me. I tell him often that he has a good imagination and that he should write, but he won't do it simply because he has no faith in himself. Anyways, it was nice just laying there and him actually making jokes, he hasn't done it too much lately.

  I just re-read this and it seems scatterbrained. In a way it is, I did take two muscle relaxers and a norco before coming in here. I will save that for another blog.

  Hope all is well with you friends. Have a good rest of the weekend!

So here's an update...

Hey all, just doing a update about what's been going on with us. We are still alive and kicking obviously =)

A month ago today, my youngest daughter and her boyfriend moved from Missouri to Cali to live with us. She was hanging around some not so good for her people and definitely was doing things I didn't approve of in any way. (I won't go into that, that is her story to tell if she cares to share it) I will say that I was pretty worried and stressed about this change in both her lives and ours. And we had already been down this road with one of Mr. Hubby's sisters already. The first couple of weeks were pretty rough, she wasn't the same girl that was here visiting seven years ago. I think part of me hoped she would be the same sixteen year old that she was, but in all reality, she's had two beautiful kids since then and has been through a lot of stuff that no twenty-two, (now 23 year old) should go through.  She was really introverted, kept to herself in her room, and was really jaded. Since then she has really opened up and become the daughter I had always known her to be. I am trying my best to help her heal and get through her problems while letting her know that she can still do anything she wants to do. Life is rough, it is, we all have our own stories, some good, some bad. I know where she's coming from, I lived it myself. I try to let her know that I'm here for her, and that I have her back. It has given me something to focus on other than just me being sick.

On that note, the doctor has determined that not only do I have crohn's, I have IBS on top of that and a very slow moving bowel. I am still waiting to meet with whatever surgeon they are giving me. The insurance finally okayed the steroid, a one month supply was over $1500. (I see now why they turned it down) I have to be on them three months. She has added two new meds as my vitamin d is very very low and the other is to help with the bowel issue. They covered the vitamin d but of course, not the one to help me use the restroom because its another almost $400. She has also decided that we are going to do the Humira injection along with the Imuran pill. My tb test came back negative, so we are just waiting on one blood test to come back and then hopefully my insurance will okay those meds and I will get started on them. We will see...

Mr. Hubby is doing okay for everything that has been going on. He got his cardiac clearance, his primary doctor is just waiting on the pulmonary function test to give final clearance for the surgery. He is still dealing with both violent and suicidal thoughts. I see him struggle daily with this and it hurts me that I can't just take it all away. I have dealt with depression since I was six years old, and although I can say that I know what it feels like, I still don't as his thoughts are extremely different than my thoughts were. Yes there was self harm, and thoughts of suicide, but no two peoples depression is the same. And we all deal with it in very different ways.  He was making so much progress with his therapist, and then workman's comp comes along and takes that away and now he is back to the same problems he was having before therapy. I personally sent his lawyer a copy of the referral so no one can say he did or didn't get it. So hopefully he will be able to see her again soon.

I ended up in the ER about a week and a half ago with back spasms so bad that it hurt to breathe. They did xrays and found out that the spasms were straightening the curve out of my spine in my lower back area. We assume it's from the steroids as I had no problems with my back before I started taking them. The hospital gave me a light muscle relaxer and it worked great. I followed up with my doctor and instead of giving me more of the muscle relaxers, he prescribed me hydrocodone again. My GI was a little ticked as any pain killer, prescription or non not only can cause issues with your stomach, but can cause major constipation on top of that. (like I need any help there) So yeah, I'm kind of having to suffer through this right now as my doctor went on vacation for the week. And I will be the first to say I am not doing well at the whole bedrest, no sitting, no lifting rules. I can not just lay in bed all day. It drives me crazy. I do have to say, the Flexeril put me back in bed and I got some really good sleep haha.

Mom and I have been off work for two weeks and going a bit stir crazy. Work starts back up for her this weekend and for me next weekend though and will be steady for awhile. I am crossing my fingers that things go smoothly with the meds and me working, but I have the worst luck with side effects. Luckily, my boss, like my previous bosses, know about my condition, I am up front about everything, and I will be the first to let them know if I can't do the work at the time. Summer camp is in a couple of months, I hope things are all evened out by then. Summer camp is the best part of the job, the kids are great and I love the staff we see year after year. So here's to hoping.

Hope things are well with all of you guys and gals. I would love to hear any comments you have, either on here or drop me a message on facebook!

Ok so this is what's going on and I am frustrated so yeah....

I am writing this because frankly I have already told my husband, a daughter, my mom, my mother in law, my brother, my male best friend and I am tired of repeating the story so I am putting it here, you all can read it and then message me or give me input if you would like.

I went to my GI doctor yesterday for my follow up for my colonoscopy. First off, they were not able to get a clean biopsy from my colon for the cancer test due to the fact that after 4 laxatives and 4 liters of drink, I was still partially impacted. So I have to redo the colonoscopy in a couple of months.
My Entocort steroid STILL hasn't been approved and my doctor took it upon herself to write my insurance to tell them why I need it.

My pills for my Crohn's are no longer working. So I have been given the options of the following...

1. The Remicade 3 hour infusion (at a hospital) every 8 weeks plus the Imuran pill.

2. The Humira Pen (given by myself) every 4 weeks to start plus the Imuran pill.

3. The Cimzia Injection (also given by myself) every 4 weeks to start plus the Imuran pill.

You are welcome to look these up, but I am warning you, the side effects are all the same and not good.

For starters, there is a 1 in 40000 chance of developing Lymphoma with all four of these meds. If you have dealt with prior cancer, which I am still dealing with through my primary AND obgyn on what they want to do, then the chance is greater.

I am looking at weight loss, losing my hair, or total alopecia, severe abdominal cramping, Multiple Sclerosis and Lupus like joint problems and pain, chest pain, fatigue, fainting and dizziness, respiratory infections, rashes, itching, tightness in chest and/or difficulty breathing, nausea, and vomiting after taking the meds...just to name of a few of the COMMON side effects. These are just what my doctor listed off the top of her head.

I am at a point in my disease where this is the next option. I really have no choice in this. I really have no choice in which one I take, it's kind of up to my insurance.

I am also meeting with a surgeon because I have scar tissue in my intestines that the disease has caused and that will have to be removed and my intestines put back together.

So yeah, this is where I am at this point. I am a little frustrated, no, a LOT frustrated that I wasn't at least notified that they couldn't get a clean biopsy for the colon cancer. My mom is dying from it. I feel that is a pretty important thing to let someone know. I went in to this appt expecting to hear results and I got nothing..again.

Luckily, the steroids they had me on for the bleeding, has gotten that under control so I am good there, Now it is just the waiting game to find out which two lovely mixtures of the meds my insurance will be covering, and if they are going to cover my steroids.

The final news about these medications is they are 100 percent immunosuppressive. Meaning they totally stop my immune system. So I am open to infections, colds, flus, and when they hit me, I will get them harder and they will take a lot longer to get rid of because of this fact. Fun times.

I will also be having a TB test (needed before I can take any of the meds at all) and an xray to make sure there is no more damaged intestines that were missed. So lots of fun stuff ahead.

Anyways, I could use some friendly words, I am just overly frustrated, and frankly, a little scared of the next part of this journey.

Merry Christmas/Happy Holidays

  It's 3:58 am and I had to get up to take a pain pill...ugh. I know better than to eat before bed but I was just so damn hungry, I couldn't help it and now I am paying for it. Wanted to wish all my friends and family a very Merry Christmas, I hope you all have safe travels and the best Christmas ever! Since I am up for a few, I thought I'd do a quick post seeing that it's officially my 44th birthday today and I have a words of wisdom/advice to share with the younger ones out there. Some amusing, some serious, but still words to live by...

Memories (an excerpt from the book that crashed and burned with my hard drive)

"..There are so many memories that I have yet to remember. It's been almost forty years and I figured something would have surfaced by now. Why can't I remember? Will I ever be able to remember? Maybe things are better off where they are now, maybe it's better they stay hidden. Memories locked away. Then there are the nightmares, these being a whole other story. There are a few things I do remember with the help of my dreams... A red headed man, a hallway going upstairs to a room...the door leading to the hallway looked like the rest of the wall so people didn't know it was there unless they saw it open.  I see a camera often, no idea why. He is in my dreams a lot, normally chasing me until I wake up in tears. I remember things here and there, things my grandparents said I was too young to remember. There was no way I could know these things, but I do. And honestly, I want to remember, so that maybe, just maybe, I can move on...maybe.

Shit Mr. Husband Says...

The last week or so, my crohn's has been kicking my ass. I haven't had a days rest from it at all, I wake up in pain, I go to sleep in pain. So, I wake up this morning to the phone ringing and Mr. Husband having a conversation about losing his health care unless he gives them all this information, which we figure is just a scam to get your personal info. He hangs up on them and then turns his attention to me. He asks if I am feeling any better, and I tell him no. And this is where it starts to get interesting...

I can not brain today, I has the dumb...

I am being betrayed. My head is full and I think my brain is on the fritz. Seriously got some sort of mental incompetence going on.