To be continued...

I've been throwing ideas for posts back and forth for awhile now. I have three drafts that I am close to being done with but they just don't quite feel complete so I haven't been able to bring myself to publish them. Two out of the three, well, I was high. And sober me has to go through and try to fix anything messed up in those posts. I'll just say it's been interesting and I will leave it at that. In my creative moments, I also have two short stories that I've been working on but I am not sure they will ever be seen by anyone else. I am so unsure of myself lately, not just in my writing, but in pretty much everything I do. Not sure if it's lack of confidence or just still the backlash of my mom passing that has me feeling so uneasy about things.

This past year, we were closer than I think we have ever been in my entire life. It makes me hurt to think that it took her death sentence to knock some sense into me that maybe I should reach out more. I'm not complaining, the last year was wonderful, talking every one to two weeks, and not just a fly by phone call lasting two minutes. Things that we should've talked about years ago finally got brought up. I finally opened up and told her about the sexual abuse that happened before she took over custody of us. She asked me a lot why I never told her. And I told her, bluntly, she wouldn't have believed me. She didn't believe my sister about our dad. She didn't believe my real mother about her dad (kicked her out when she was 15.) I was already labeled the "bad kid" because I came to them damaged beyond what they thought I was. I spent years and years in therapy because of the fucked up shit that I saw and that happened. I am almost 45, I still have nightmares. The only difference is, I no longer go to therapy. I no longer take pills to make me seem human. The medical marijuana seems to be helping just fine in that department. I feel again, I can cry again, and I don't feel so robotic.

I know I seem to be rambling. I haven't really written or talked about her death. It's not something I am comfortable with. There is quite a bit of "dirt" in my family. I could fucking write a book. And now, if I wanted, I could actually do that without worrying about hurting her feelings or upsetting her, but I am just not at that point to be writing about being a survivor when I don't really feel that I am. I'll be honest, I don't always feel like I've truly overcome anything, because somewhere in my head, you aren't a survivor unless you've gotten over it, something I will never do. It will always be a part of me. And to those who know me who seem to think I have my shit together, I may look like it but not even close. The only thing that saves me right now, is times of a brain fogginess/memory loss. Doctor isn't sure what to chalk it up to. Sometimes they say it's a fibro-fog, but my gastro doctor seems to think it could be MS related as it is happening with a few other different symptoms. I really hope not because I don't need any more bullshit on my plate...

Oookay. So I think I just wasted like 15 minutes just sitting here staring at nothingness.  I lost all train of thought on where I was going with this post...so yeah...To be continued...



.

I Am Struggling...

This may come off as a little scatterbrained and if so, I want to apologize in advance. I am having a rough time tonight, having a rough time keeping my cool. I am trying to take care of the house, trying to take care of mom since the hospital, trying to help get Mr. Hubby ready for his surgery on the 26th, and I suffer from Crohn's, IBS, Fibromyalgia and possibly Rheumatoid Arthritis. On top of this, I have suffered from what was once was called manic depression, now called major depression, along with minor ocd, and anxiety. I take a injection in my stomach every two weeks and because of those shots, I have to take a form of speed called phentermine (which only works half the time) A week ago, I slept most of the time for 4 days straight, while on that med. I take 13 pills every morning and at night, if in pain or having muscle spasms, I take flexiril, or hydrocodones...if absolutely needed. Every month or month and a half, my doctor gives me these prescriptions, 90 count of each in case I need them every 8 hours. I never do, I only take them during the day if the pain is unbearable, and normally by the end of the day, I am in pain, so I will take one depending on the form of pain before my hot bath and bed time. I was on steroids for months, and the lower back spasms caused the curve in my lower spine to straighten out.  I am saying all this because it leads up to my newest problem...

It's been awhile coming...

They say when it rains it pours. I think I/we can fairly attest to this with our recent streak of luck. I mean, I can not be the only one that when something good happens, and things start looking up and everyone is feeling happy and relaxed, some freaking high power decides to knock you down a notch or fifty. At some point, you begin to wonder what exactly you did so wrong in this universe to deserve such luck. I am nice to people, I give money to those who need it (when I have money), I donate to cancer foundations (once again, money), I respect my elders, I am a damn good listener and always have a ear for anyone who needs it, and I try and put most peoples needs and wants before my own. All in all, I think I am a good person. Seriously, I keep telling myself, it has to get better, it can't be bad all the time, right? But thus far, positivity hasn't gotten me far at all. Anyways, not to sit here and complain (which I feel I have every right to freaking do), but I thought I would share some stuff that has been going on with us recently so that people understand what has been going on...

Let's Talk Movies...

We were laying in bed last night, watching something, I don't even remember, I was sooo tired. And Mr. Hubby made a statement about how his movie choices are so much better than mine. I scoffed at that statement and the argument started about who has better taste in movies. So he starts bringing up all these "spoof" movies that I have made him watch. The only reason I make him watch them is to see how long he will actually sit through them, although sometimes, there is actually some stuff that is so stupid, it's funny. He then asked me to provide a movie that he has made me watch that was bad. Well my go to movie is always Frankenfish. Seriously, look it up. He tells me how awesome that movie is and asks for another example. Well I will be honest, my memory hasn't been so great since I have started all these medications so I took to our movie collection and the internet to find a movie or two that he has made me suffer through. Here is my list...

1. Frankenfish
2. Abraham Lincoln : Vampire Hunter
3. Team America, World Police
4. Any Paranormal Activity movie past the 1st and 2nd.
5. Zoolander
6. Grand Budapest Hotel
7. Donnie Darko
8. Dead End
9. Step Brothers
10. The Dibbuk Box aka The Possession
11. Blades of Glory

This was all I come up with in the time I was awake. Trust me, there are more. I will be adding to this list. But in the same breath, he has gotten to me to watch some pretty good movies too. And I have to give him credit that when he says I will love a movie, 9 out of 10 times, he is correct. And he is fair when he watches movies, because it could have a crappy rating, and we will usually give it a shot. Because of that, we have watched some cool stuff that most people probably wouldn't even try. He has also gotten me hooked on Marvel movies. I was never into them nor was I into comic books, but he tries to explain to the best of his ability how this movie ties in with that movie. So here are some of my favorites that we have watched together...

1. John Wick (wickedly awesome movie)
2. Warcraft
3. Scouts Guide to the Zombie Apocalypse
4. Serenity (He also introduced me to Firefly)
5. The Last Witch Hunter
6. American Ultra
7. The Best Exotic Marigold Hotel
8. The Hundred Foot Journey
9. Most of the Marvel Movies (not a big fan of the Hulk movies)
10. August Rush
11. The Aviator

There are so many I could add to this list. He really does have some serious love for movies. And for the most part I trust him when he recommends something.  But when it comes to movies like Gingerdead Man, yeah, not happening. He also has asked me throughout the years if I have seen this or that movie and then swears that I have lived in a box my entire life. And it's not that, it's there are some movies that just don't sound appealing. I don't like most westerns, war movies, or gangster movies. Never have been a big fan. And he tells me I should watch them, but I just can't bring myself to do so...

1. The Godfather movies
2. The Fight Club (someone ruined this movie by telling the ending)
3. Inglourious Bastards
4. Reservoir Dogs
5. Goodfellas
6. Any Bond movie
7. Any Mission Impossible movie

That's just a short list, there are many I just don't care to watch. Some of you would disagree with me, I'm sure. Feel free to post the dumbest, and best movies you have ever seen.

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.