a reintroduction

I don’t know what draws me back here.  My new “blog” is technically my tumblr and although I do occasionally write there… I don’t write like I have done here.  This has always felt like a diary to me whereas tumblr is like a fast paced spew out random thoughts thing.

There is an ungodly amount of bullshit that has happened in the time that I’ve been gone from this blog.  Including things I just don’t think I will ever be able to talk about.

Maybe in time I will write a little bit more about all the missing aspects of this blog but the biggest thing to mention is that my husband is now on the UNOS waiting list for a new liver.  Officially listed.  Officially waiting.  This is obviously huge and when the time comes a new organ will change our lives dramatically.

After some hospitalizations this summer, Ki’s GI finally agreed that it was transplant listing time.  If it wouldn’t have happened when it did I would have become irate with a man I otherwise liked very much.  But enough was enough truly… an alpha 1 liver does not get better, does not stabilize like some other forms of liver disease… which let us be honest here, the only type of liver disease that has the potential to really stabilize is that caused by alcoholism IF the alcoholic quits drinking.

We were then transferred to the ‘official’ liver clinic to a hepatologist that specializes in transplant patients only.  That made it all feel very real for certain.  And then they set up the appointments for transplant testing and that was all… so much a blur.

In my head I had this idea of what the transplant testing would be like.  I would gather around my family… have them come and show support.  The testing process would be serene and empowering for him, I would make it that way.

Instead he and his mom left the night before and I went down the next day.  I had a massive meltdown the afternoon I left and sat in the truck and hyperventilated in a parking lot for 20 minutes before I calmed my ass down.  The day of testing I arrived at the hospital separately and missed the psych eval with him because my phone had no service and I didn’t realize it until restarting it and getting a slew of messages from him… it was just me, him and his mom…. the social worker eval made me insanely nervous because he kept looking like he was going to pass out during it… everything was driving me crazy.  I was so upset, because I felt like… I should have made this better for you in some way.

And then the wait.  The fucking wait to find out if he would be listed.  There was nothing indicating he wouldn’t be but still… you kind of sit on pins and needles with every single ‘what if’ banging around inside of your skull.

The day he got the call he went outside to take it while I paced around nervously inside of the house.  It was only when I heard him begin to ask certain questions that I let myself believe that it would be real.  When he came inside and told me I just hugged him and cried.  Happy tears, anxious tears, hopeful tears, tears that have been held in for so long awaiting this hope.  Then came waiting for the insurance approval which took about 2 weeks before officially being put on the list.

We’ve been told the average wait time is 6 months.  We are very very lucky to live in an area that currently has a shorter wait time than other areas of the country.  His meld has still stayed pretty low all things considered though so I don’t know how all of it will play out, but at the time he was listed he was told he was third on the list for his blood type.

We’ve had low sodium drama again this fall but so far his doctor has managed to keep him out of the hospital by watching the situation very closely from home, which I am thankful for.  Hospital stays always suck the life out of us and I need as much life not sucked out of me as possible in order to prepare for this whole transplant thing.

The other big thing… was moving.

To be quite honest, to move again was devastating in a lot of ways.  I felt like I had “made it” so to speak when I had my house in the country.  That is what I always wanted again after all.  Even when we lived in tiny house, I was very happy there.  But then Ki insisted that we move down the road to the bigger house that our landlord was renting.

That house never really felt like home.  Granted, things went to hell almost immediately after moving in but it always felt off to me, like it had bad energy or something.  When we left the only thing I could honestly say I would miss was the privacy and the giant yard but nothing else I felt attached to.

It just got too expensive to stay there and so we waited rather patiently while still looking as a lady in my old hometown where I spent the first 10 years of life was renovating a house.  When I first came to look at it (Ki was in the hospital at the time) I thought there was no way in hell she would ever get it up to my standards, it need A LOT of work.  She didn’t seem to think we would be waiting for her to finish but I told her we would keep in touch.  And that we did… all the way up until we decided that we were going to take it.  October rolled around and the beginning of the month we moved.

So here I am, starting again in the small town that I lived for the first 10 years of my life… living on the street I spent many years visiting my aunt and playing with my cousins on.  I literally live a few houses down from my dad which feels crazy because I haven’t been so close to any family since becoming an adult.  I even live right next door to one of my cousins.

The house is lovely.  Being in town again is weird but it isn’t terrible because I have a nice big backyard and our land lady is very carefree about us being here… very laid back do what you want type of person.  We pay $200 less for rent… no deposit, no pet deposit.  I mean that alone was such a huge blessing.  This place is cheap for this town even, because there is a private college and most people who rent, rent to students at a rate of $200-300 a room so a 3 bedroom house, they almost always ask $900 a month here…because they can get with with the college students/roommate situation.

At any rate… that’s been life in a nutshell this year… Ki’s health things… moving.  And now 2015 is almost gone and I can only imagine what crazy shit 2016 has in store.

I just pray for my husband’s health.  I pray he gets transplanted soon so we can have keeping a new liver healthy being the health focus instead of keeping a dying liver stable.

My faith has never strayed there that everything will be okay.  That he will be okay.  Over 2 years ago I felt this strong feeling that it was going to work out.  I still believe that with all my soul.

Life feels hopeful

I still have my days when I feel like life has kicked the shit out of me, but for the most part, I feel very excited and hopeful about the future once again and that is a great feeling to have.  At one point I seriously wondered if I would ever feel that way again.

I’m super excited about becoming an aunt.  Sure I was initially a little freaked out by the way my sister having a baby would change the dynamics of our family but I am getting over it now.  I realize this little miracle will only bring more love and happiness into all our lives.  I think a part of me freaked out a little, b/c I spent so long around H and her kids and H’s life consisted of talking 24/7 about her kids because that was really all she consumed her life with.  Well that and fighting with her husband.  My mind kind of initially wandered to omg what if my sister and I can’t even have a conversation anymore that doesn’t involve baby this and baby that.  But I am beginning to realize that I don’t really need to worry about that.  Unlike H, and more like most other people with kids I know… she still has room for other things besides being all about baby 24/7.  We can still have conversations about other things.  She is still interested in my life as well.  Yes I’m a dork, but I did initially worry that she would begin to care less about what was going on with me and I would have to hear about nausea and cravings 24/7.  Again… bad experiences with other pregnant people IRL I guess *L*

I am super stoked to be planning her baby shower.  Though I must say, decisions will be much easier to make regarding that once they find out if baby moose is a boy or a girl.  And that kid better show off the goods cuz auntie raychel is having a hard time making decisions about things!

I must admit that I am a bit nervous about going back to classes, although I am not approaching it this time with a do or die mentality.  That was actually a pretty dire mistake to have made last year and well… look what happened.  Basically all I want to do is know that I did my best.  That is it.   Nothing more, nothing less.  If I do that, then I can’t feel bad, have any regrets, ect.

It is no doubt time to give massive consideration to my health.  I refuse to sit in my doctor’s office in tears because I feel awful mentally & physically.  If I have to whine, scream, cry & fight with myself to get there, I will.  It is bad enough that I will always wonder in the back of my mind if my lack of care of it especially these past few years will come back to haunt me sooner or later down the road, but at least in the mean time I can get to feeling good again.  Physical exercise and eating correctly included.  In fact, I need to go update my school ID so I can go use the gym again until warm weather comes around I can get back on my bike.  I need to get back to doing meditation… something I enjoyed immensely shortly after our wedding until craziness happened in my life.  And of course constantly working on breathing exercises.

I have no yet conquered the HVS.  I recognize it now.  A lot better anyways.  It doesn’t cause the stress that it did, although it can still be stressful at times…It would be nice if I could seek help from a physical therapist but I don’t know if I could afford to do that on a regular basis.

I truly whole heartedly believe though that there will be a day when I conquer that.. my pain issues… be well physically & mentally and be a happy, whole, successful human being.

Rizzlerandom

This is so fucking bizarre.  In a good way but still.  Last night…all through Friday…and now this morning…I have been very well aware of my breathing and keeping it in check and not overbreathe.  If I catch myself starting to do so, I immediately relax and make sure I quit breathing from my upper chest.  And I try to keep breathing through my nose.   My brain fought me initially for a while but now it is starting to submit to actual normal breathing.  It is absolutely just insane how much better I feel and how like all my breathing problems are just ceasing to exist.  And how much I realize how fucking sore my upper body is from chronically overbreathing for months.

I’m just totally in awe and wonder why I never explored this possibility sooner rather than brushing it off.  Like, I could have been feeling better so long ago.

***

I was going through pictures for my MIL’s Christmas gift I am hoping to do for her and it was just really weird to go through the pictures of me and see how I have changed over the years.  Kinda freaked me out *heh*

I also came to the realization that I will always look better with longer hair.  Which is what I always kind of figured but now I’m very well aware.  And I also look better if I take the time to do my eye makeup nicely.  Which I haven’t done for quite some time b/c I haven’t given a shit.

Just Breathe

Last post… the 8th. It is now the 14th.

Clearly I failed the blogging everyday this month challenge. But I shall try to continue with the rest of the month. I have good reason for missing some days. Oh, I was just losing my freaking mind again, that’s all.

Long story short…my doctor thinks I’m batshit crazy. She is probably right. I sat in her office and randomly burst into tears at simple questions, feeling humiliated and like my soul was sitting there right there on the table, completely exposed.

I probably wouldn’t have burst into tears if the nurse hadn’t previously been a humongo bitch to me. But that was my breaking point that sent my blood pressure reading to the highest number I have ever seen it.

I left defeated in a way… but decided this was it. I was going to regain my life. Whatever was wrong with me, was stress induced. I was killing myself by my random freak outs.

Last night, I sat down to do some research. Wondering why I was feeling so miserable and besides the adrenal thing, nobody could tell me why. I remembered some time ago coming across a thread that matched some of my issues and a lady in it talked about chronic hyperventilation syndrome or chronic overbreathing. I dismissed it b/c I thought surely if I was chronically hyperventilating or overbreathing, I would know right? I mean, at least in theory it sounded like something that was impossible to miss.

Wrong. The more reading I did the more I realized that OMG this is me, this is what is happening to me! And this is why it happens AFTER stressful situations, not during. Because I hold onto all the stress and constantly stay in a tensed up state. This is also why… it went away, and then came back. And this is why, I had such a problem getting over things, b/c I was constantly feeding the cycle of tension, stress, & anxiety. I would get anxious or stressed… my body would tense and I would overbreathe/chronically hyperventilate and then I would in turn get anxious over what effects that had on my body and the cycle would continue. And I cannot express in words how much finally understanding that it was not my body lacking oxygen, but actually have too much oxygen has helped me. It has also helped me understand that this is why I sleep at night just fine w/ no breathing issues.. and usually wake up generally fine for a while until my body goes back into tension/stress mode thus overbreathing mode. It goes back to that mode, b/c your body got used to that mode and assumed it to be normal. Anything less than that wants to initially set off suffocation alarms in your brain.

And overbreathing can account for so many physical and mental ailments due to what it does to your body chemistry.

I wish there was an instant fix, but it will take some time to retrain my breathing. Already, just breathing slowly through my nose has helped a lot. I feel a lot of pain in my muscles from overbreathing now that I am trying to breathe more through my belly. I found myself initially shocked by how weak my diaphram seemed. Clearly I’ve been a chest breather.

Management is retrain breathing, stress reduction, SSRIs, and anti anxiety medication.

I suddenly have come fully to grips with our important it is that I correct this problem and effectively manage my stress from here on out because if I don’t, I will take me.

A site with breathing exercises I thought I would share as well.

Honestly… I’m freaked out

I pulled the lab order out of my car for the 24 hr urine test I should have gotten done this week.  I forgot to call asking them to remind me of when the hell my appt was and what lab I was supposed to go to.  I’m assuming the one at the hospital.  I’ll go there tomorrow to see if I’m correct, assuming I can do so on a Saturday.  I don’t know why not.  It’s a hospital…don’t they pretty much have people there 24/7? *heh*

I’m scared though.  I don’t want to have anything wrong with me.  There is another part of me, that would find relief though, knowing that there was actually a reason I have went through everything I have.  But another part of me…frightened.  If there’s excess cortisol in my system…that more than likely means I have a pituitary tumor.  I’ve had the crap scanned out of me… so there isn ‘t a tumor or anything elsewhere, which is good don’t get me wrong, but nonetheless frightening.

I can’t help but thinking that I am going to find out what I fear.   I have all the fucking symptoms.  In the past couple years I have went from one person… to this.  Weird shit happening to my body.

And then…how could I afford surgery?  Treatment?

I know I’m getting ahead of myself.

Actually… it looks like I’ll probably have to time it, if I can get a hold of them later in the day… so I can bring in the samples on Monday.  I’ll have to reschedule my appt for later in the week or next week depending on the turn around time.

This is all scary to me.  But to have an answer… that alone would be priceless.  Especially when I look in the mirror and only see glimpses of who I once was.

arrrrrandom

Today has been full of stomach cramps and spasms which are probably highly related to being a pig and consuming a large bowl of Life cereal, which never attends to agree with me anyways.

Last night I was feeling quite sore from the deep tissue massage.  Today still a bit sore but I still feel relaxed muscle wise.  Well that and I’m still taking painkillers and muscle relaxers to help.  I think n ext week I am going to ask her to work on the area around my ribs b/c that is what still feels super tight.

I’m really super hard trying to stay positive about all things health wise… none of this stuff has killed me yet and it is not going to so I just need to keep my head above the water until they all get worked out.

**

Unfortunately I have to unstrike “breaking nacho of his puppy pads” off my 101 list for now and keep trying.  The little bastard pee’d on my floor not once but TWICE today.  OMG…I am so mad.  He may be the last papillon I ever own.  They are seriously deranged when it comes to potty training.  It pisses me off because he is such a smart dog and can learn just about anything but the potty training is just amazingly mind boggling for him.

**

I’m bummed b/c one of my awesome Christmas present ideas for my brother appears to be nixed b/c my husband did not act  on it fast enough.  I kept telling him to pick it up for me since it was right there at his place of work…and did he, nope?

Yet another lesson in if you want it done, do it yourself.

Massage=yay

About the time I mark dog’s potty pad training thing off my list he goes and has an accident on the floor…argggh. But in his defense, it was because we all fell asleep last night w/o taking him out. He needs to be a bit proactive about this though, you know, wake us up and let us know he needs to be taken out or something.

**

Today I went for a deep tissue massage after my MIL told me massage therapy really helped her back pain. It was a brilliant experience. Absolutely wonderful. So I am going to make it a regular thing in my life, at least for a while. Not only is it good for my body, but wonderful for my mind as well.

Which reminds me, I can mark off getting a massage on my 101 list. Sure I had it listed as getting one at a diferrent place but I won’t go there for a massage b/c I can get these amazing ones for cheaper.

I figure between the massage therapy…GOOD chiro, and taking care of myself….maybe I can get these back issues solved.

I’m hopeful at least.

I keep putting off going to the lab to get the stuff figured out for the 24 hr urine adrenal test. In fact, I think my appointment is next week and I don’t know when so I have to call. And if it is on Tuesday like I’m thinking it is, I’m probably gonna reschedule.

I want to get stuff wrapped up with this doctor and possibly transfer my other stuff back to the university clinic as far as meds go b/c these doctor bills are killing me. Thank GOD the hospital is writing off the CT scans and other things…the bill for that was $7000!!! That isn’t even something we could pretend to pay. It would have been oh hey that’s nice, send it to a collection agency or sue the crap out of me or something b/c we don’t have shit worth $7000.

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