Friday, May 27, 2016

S L E E P

Sleep.  Sleeping.  Slept.  To have slept.  I miss sleeping so much!  I used to sleep a lot.  I used to be able to sleep a lot.  Now I'm lucky if I get more than three consecutive hours of sleep in any give day or night.  The irritating part is there isn't even anything on my mind.  I'm not over thinking things, I'm not planning things, I'm not brainstorming, I'm not having made up arguments in my head, I'm not having racing, word salad thoughts.  I'm not balancing the checkbook or trying to solve problems.   I'm just... awake.  Uncomfortable.  Itchy.  In achy pain that isn't enough to be excruciating but enough to be annoying.  My muscles feel like they need stretched or pulled.  My joints and tiny bones in my wrists and hands ache.  My shoulders kind of feel out of socket or like they need popped.  My calves feel kinda crampy when I try to stretch.  I'm getting enough water I think because I'm constantly in the bathroom peeing all night - which also isn't helping anything.  When I'm not peeing though, I'm all with the diarrhea; but that's nothing new.  I'm just uncomfortable.  Is it my Fibromyalgia?  Possibly Restless Leg/Arm Syndrome that I've never been diagnosed with?  Is it something totally new that I can add to the list of stupid crap that's "wrong" with me that no one will ever be able to affirmatively say what it is and what causes it and actually give me something to stop it?  Is this normal?  Does everyone feel this way?  Am I going insane from lack of sleep?  All these questions are what I think about.  Not any actual problems. And I'm fairly certain I will probably...


(All ya 80's kids gonna get that Freddy reference! HA!)

I'm trying lavender essential oil in a little diffuser.  They say it's calming and can help you sleep.  It's natural.  I'm undecided on if it works.  It hasn't been long enough to tell for sure.  But at least I'm trying.  I just hate not sleeping.  I hate this uneasy feeling in my body.

I've tried all the drugs too and nothing works.  I just end up with headaches the next day that aggravate my current nausea situation.  And they don't even help me sleep.  That's the part that is so stupid.  Why doesn't my body want to sleep?  I hate insomnia.

I apparently posted almost this exact same rant back in July last year.  Weird.

Friday, May 20, 2016

No Social Media for me...

So I actually checked the email I have associated with this blog and found a ton of messages.  I apparently had/have/had a Google+ account I have no idea how to use.  I got a Hangouts notification on my phone today and realized people have been reaching out to me about my blog and other advocacy opportunities for months.  I've not gotten ANY of those messages and I am SO sorry.  I'm not deliberately ignoring anyone.  I just don't know how to use any of these things.  I do not have social media.  I do not use social media. I typically do not even like social media. I do have an Instagram account but that is all about pictures - nothing else.  Please be aware that if you need/want to get ahold of me either leave a comment on the blog - any post will work because I do get all the comments. Or you can email me at JennisGuts at Gmail dot com but I do not check that very regularly so it might take awhile to get a response.  I do not use Google+ and don't even know what it is or how to use it.  I don't understand a thing about Hangouts so if you have sent me a message that way please know I don't know how to retrieve it or respond to it.  Please just resend in a comment or regular email.  I'm so sorry if you feel I've ignored you.  I haven't.  I'm just not good at all these forms of communication.  I don't like technology at all really.  I hope this message reaches all of those who have tried to reach me.  Please let's try again...

Thursday, May 19, 2016

World IBD Day and Reality


I jacked this picture off of Instagram to post on here because today is World IBD Day! This meme states what the biggest problem with knowledge about IBD is - people generally think it's just a pooping problem.  Even I, a seasoned Crohnie, used to think that my biggest problem was diarrhea but really it isn't.  It's one of the biggest problems I have, yes, however it is only one of an all encompassing disease that has me constantly rerouting my life.  Fatigue, nausea, insomnia, cramps, bloating, bleeding, hemorrhoids, anxiety, eye problems, skin, hair and nail problems, nutritional deficiencies, back pain, joint pain, pretty much constant pain somewhere in my body, the list of problems associated with having IBD is endless.  I hate it.  I hate everything about it.  But it is who I am.  I am a what a person with IBD is.  I'm what they look like.  I'm what they feel like.  I am Crohn's Disease.

The saying goes - "I have Crohn's Disease but it doesn't have me".  Well, that's bullshit.  It does have me.  I live with it every day.  I have had to change my whole life because of it.  I had to quit working because of it.  I'm on disability because of it.  I am constantly trying to find relief in all kinds of ways from the problems associated with it.  My daughter has been effected by it, as has my husband.  My life is different because of Crohn's Disease.  My body is not the same - inside or out.  My whole being is changed forever because of Crohn's Disease.  It will never go back, it will forever be broken and damaged because of surgeries and drugs and disease.  I have been able to carve a life out around the illness.  I am quite happy with my life by and large - outside of being sick.  But Crohn's Disease does have me.  It always will have me in it's clutches slowly, quietly destroying my insides.  Waiting to cause a full blown attack, to destroy what happiness I have found in life.  But it's really just a matter of perspective, right?  Don't think about it too much.  Don't focus on it too much.  Concentrate on other things.  Work around it.  Plan around the unplannable.  Do what you can.  Get by.  Be positive.  That's also a huge part of living with IBD.  People generally don't understand how difficult that is to do day in and day out either. 

Let's all try to be like Tim's loved ones and understand that having IBD is much more that just pooping a lot.  Let's remember how devastating having a chronic illness is on a person in all aspects of their life.  Even if it isn't something visible.  Keeping IBD in the bathroom is the worst thing we can do.  Because honestly, all of the problems associated with IBD spill out into every other room of the house and I don't just mean the smell.


Wednesday, May 18, 2016

Best of the Best ... Still

Big thanks to Healthline for choosing Jenni's Guts for one of the 13 Best Crohn's Blogs out there.  I've consistently won this award and it surprises me every year.  Thank you all so much!  I am really glad to see that I am helping others with Crohn's and Colitis and other "spoonie" problems.  Here is a link to all the other winners who should equally be as happy and excited at me.  Lots of great blogs out there and I'm proud to be among them!  Congratulations everyone!


Monday, April 18, 2016

The Category 5 Shit Storm - An Autobiography

I really do try to think positive.  I always try to remember that bad times can't last forever and that things will eventually get better.  But why does it seem that the more that I think this way, the more powerful the shit storms of life seem to become?   It started roughly two months ago.  Just a few little things at first.  But it all spiraled out of control so fast I'm still not sure it even happened.  I am only writing this all down because one day I hope to look back and see that yes, it all actually did happen, and we made it through - somehow. 

Picture it, Ohio, March 2016

Our one and only form of transportation broke down.  Our poor little vehicle needed some work and was officially dead to us.  A vehicle was able to be borrowed and we were fortunate to have that so my husband and daughter could make the trek back and forth to school and work every day which happens to be about 40+ miles one way.  A friend of ours was able to take our car and try to fix it.  But the part it needed wasn't easy to find - or get.  (It's actually just now on it's way to Ohio from California.)  No fault of anyone, just generally a broken down car.  It happens.  Okay.

About a week later, "What's that weird smell?"  My husband asked one afternoon as we walk inside from being just down the street at his parent's house.  After some investigation it was discovered that the wall where our furnace sets was burning hot.  You couldn't even touch it, it was that hot.  We turned the furnace off and tried to figure out what was happening.  After two hours of being off, the furnace was still emitting heat and the wall was still hot.  Not good.  My husband flipped the breaker off to the furnace and in twenty minutes it was cooled off enough to finally touch it.  Odd that just turning the thermostat off didn't cool anything down.  It was evident that our furnace could very well have burned our house down while we were down the street and our daughter was asleep in her room.  Thank God we came home when we did!!  With it being March and knowing it would be warming up soon (Haha Ohio - great joke by the way - it's been in the 30's until 2 days ago!) we decided we would just keep the breaker off and worry about the furnace when we had the money to fix it - (the Social Security money that is probably NEVER going to come.)  We have some little electric heaters that have been doing a great job of keeping us warm so please don't think we're freezing in this stupid Ohio weather.  Alright, just a little bump in the road.  We can deal. The house didn't burn down.  Everyone is fine.  It's okay.

The next week, still waiting on the car part with the total inability to be able to do anything to rush the process (still, financially limited so taking it somewhere else was out of the question) the borrowed vehicle had to go back to it's owner so we were left with no transportation.  Well, shit. 

The same Sunday we returned the borrowed vehicle I decided to end my evening with a nice hot shower...that was strangely only luke warm.  "Honey, I think the hot water heater is acting up."  So we check the hot water heater, no leaks, nothing weird going on visually.  My husband decided to check the breaker to make sure it hadn't somehow gotten flipped.  As soon as he touched the breaker to the hot water heater it sparked.  He jerked his arm back and as I was trying to make sure he wasn't totally shocked, the main breaker to the house popped with a huge flash and all the power to the whole house went out.  I screamed in a panic because I had never seen anything like that in my life and thought for sure everything was going up in flames.  Not to mention I was sitting about one foot from the breaker box watching it when it happened.  After a string of vulgarities were spewed from my husband's mouth (and mine) we realized we had no electricity.  No hot water.  No furnace and also now no car.  We also had basically no money to fix any of these situations.  This was not okay.  That's twice now my house has almost burned to the ground - with my kid in it!! There is not enough anti-anxiety meds in the world to help this kind of situation.  Not that medicating myself would have solved anything anyway.

After calming down we contacted an electrician to come over the next morning and it was decided we needed a whole entire new electrical box installed.  Alright.  Great.  My husband even wheeled and dealed and got a really good price from a trusted company and we scheduled it, got it done, now we had a new breaker box and electricity.  But still no hot water.  Okay. Let's figure that out now.

The next day our county job and family services office called me about our daughter.  She is adopted.  It's a long complicated story about how it happened.  However, this happened over 11 years ago and everything has been finalized and done.  She goes to school, she has a part time job, she's being recruited by colleges, she amazing.  But some uninformed case worker called me out of the blue and told me that "we have a problem."  She went on to say that all of our paperwork was illegal.  Nothing was signed by the judge and it meant that everything we had stating that our daughter was legally our daughter wasn't actually legal.  OH MY FREAKING GOD!  Two phone calls and one huge anxiety attack later I found out the papers are stamped and recorded and TOTALLY legal and have been this whole time - just like we thought.  Apparently different counties do things differently.  Why I know this and the actual county worker didn't is beyond me.  I did however cover my butt and sweet talked the lady at the court into sending me a judge signed duplicate document so that will NEVER happen again!  Crisis handled.

After a few days my husband was able to get a new hot water heater and his brother came over to help us install it.  Really it, wasn't that difficult.  Until my brother in law turned the electricity to it on before it was completely filled up all the way and fried the top heating element in the matter of about two minutes.  Seriously?!  Yes.

The next day a new heating element was retrieved and my husband installed it like a boss and we had hot water.  However, due to the shitty water where we live and the fact that the old hot water heater was so old and gross and full of lime or whatever it wouldn't even drain.  It had to be dragged out of the house completely full of 40 gallons of water.  Now my husband possibly has a hernia. He was able to go to the doctor and they said no but he definitely is having some major stomach muscle pain now.  I mean honestly! The man is just trying to take care of his family.

But wait, there's more...

We still had to get transportation.  We had very little money, even less after the electrical and water heater issues and our car was still in the process of being fixed.  We managed to find a car and went ahead and purchased it.  We knew there would be some problems with it because when you buy a very cheap car it's normal that you are going to be taking a chance.  Well, after some routine maintenance and tuning up and one huge hail Mary shot, my husband was able to get everything running smoothly.  I mean honestly, there isn't much he can't do!  But being backed against a wall like we were with everything doesn't make it fun, or easy.

I'm not going to lie though, with the shit storm we have just gone through I am still scared to breathe.  I'm afraid to move almost.  It's like everything that could go wrong, did. But I also know that it could have been a lot worse.  I've done nothing but learn that I had taken everything in my life for granted.  Electricity, water - hot water, not being on fire, transportation that is reliable and can go a lot of miles and not break down, not having an anxiety attack every time my husband and daughter leave the house because I wonder what will happen at home and if they will reach their respective destinations safely and be able to get back home safely.  Every time we turn around it seems like the rug keeps getting pulled out from under us. 

I have been under so much stress that I had to go to the emergency room the other day because I could not move my head.  My neck/shoulder/arm had seized up and all the muscles would not relax no matter what I did. They gave me a shot and some muscle relaxers and sent me on my way.  It took another full day before I could sort of turn my head to the right.  That was a week ago and I'm still feeling pain and am sore from it.  I often wonder how much stress a person can take before it kills them.  I wonder this because I think I am involved in some kind of weird experiment where I'm being tested and evaluated to find out that exact information.  I just wish it would stop.

I don't want much for my life.  I really don't.  I just want a very simple life.  I don't need a lot and I don't want a lot - not things, not people, not even experiences.  I just want my simple little home with hot and cold running water, electricity, dependable transportation for my husband and daughter, food in my cupboards and refrigerator and no fear of everything falling apart around me - or catching fire.  I will take Crohn's disease, I will take pain and diarrhea and Fibromyalgia and anything physical like that a million times over all the things that have been happening.  Shit happens in life and I understand that, but why all at one time?  I am so afraid my husband is going to have a heart attack or a stroke because of all of this stress.  I pretty much forced him to go to the doctor for a check up and the possible hernia.  They did an EKG and blood work which all came back normal - praise Jesus!  But can we stop pushing it???  Please?! 

I don't want to say something dumb like, what else could go wrong or things couldn't possibly get worse because I know they can - and will.  But I will say - please just stop.  I seriously cannot handle anything else.  The experiment needs to be over now.  Please.

Thursday, March 24, 2016

IT'S FINALLY SPRING!!!!!!!

Thank the Gods it's finally SPRING!!!  Kind of anyway.  Living in Ohio allows you to experience all the seasons all the time.  Sometimes even all in one day.  Like today - it was 64 degrees upon awakening, nice and mild out, but now this afternoon the gale force winds have taken over and the rain will come along soon in spades.  I've had to go fetch my trash can about four times now because of the crazy wind.  However by bedtime it will be down in the low 30's and probably snow.  Yay Spring!!  Yay OHIO!!  (Insert eye roll here)

I just want warmer weather because honestly, my body cannot handle the cold anymore.  It also cannot handle the heat so I don't want it to be summer any more than I want it to be winter.  I just want it to be something neutral so as to not cause my body pain.  But let's be honest, my body is going to wreak havoc regardless of the weather.  It will eventually find some way to kill me.  It's currently using crippling nausea and now vomiting.  It used to just be nausea - now I actually throw up.  A lot.  Life is good - what can I say.  It's all a matter of perspective.  Sarcasm is a perspective right?

I have to go chase down my trash can again...  Hope I get blown away...


Wednesday, March 2, 2016

If only I were pregnant

My morning thoughts after another sleepless night ...

If only I were pregnant...
It would explain the constant nausea I have every day - especially in the morning.
It would explain these weird hot and cold flashes I've been getting all the time now.
It would explain my new food aversions and cravings.
It would explain why I have this pregnant looking stomach with a protruding bulge just under my rib cage that is actually just a hernia.  (I was with my very pregnant niece a while back and someone actually said "Oh look, two new mommies!!"  I said, "No, I'm just fat, thanks."  God, I hate people!)
It would explain why I'm so fricking tired ALL the time and why every part of me aches.
It would give me something to do when I'm up all hours of the night not sleeping.
Pregnancy would explain so many things wrong with me.  But I'm not pregnant.  Just more of the same issues thanks to my failing body.  I guess on a positive note I don't have to worry about a screaming infant or diaper changes at 2am.  :/

Saturday, February 27, 2016

100,000 Pageviews!!

Jenni's Guts has reached 100,000 Pageviews and I would like to say 100,000 thank you's to everyone who took the time to stop here and read about me and my guts!  I cannot believe this blog has been viewed 100,000 times.  Most of those weren't even me!! I feel like I have accomplished what I set out to do nearly 8 years ago, and that is spread awareness to everyone about what it is like to live with Crohn's Disease, Fibromyalgia, Depression and Anxiety.  It is more than difficult being chronically sick and I hope I've helped make those who fight Chronic and Invisible Illnesses to feel not so alone.  THANK YOU THANK YOU THANK YOU!!!

Saturday, February 13, 2016

Kefir-rific!

I met with the dietitian and we decided instead of going full FODMAP diet crazy, I should slowly make changes to what and how I eat.  These changes include Kefir - a really tart, really odd tasting, thick milk byproduct that has more and different probiotics than yogurt and it has a ton of protein - which I am supposed to be getting more of.  Like 80-90 grams of protein a day.  And I have to take the Kefir in small amounts throughout the day so it "replants" my guts continually.  It's not bad in plain form but it's better in a smoothie.  I'm pretty much smoothie-ing everything and trying to eat little bits throughout the day instead of just one or two huge meals.  I'm also lowering the amount of fat I intake at one time. And I'm trying to be mostly gluten free. Trying being the operative word here. 

I'm supposed to take a ton of supplements and stuff but I haven't gotten them yet.  I need to make this transition a little slower.  I don't want to do everything all at once because if something goes wrong and I get sicker I won't know what caused it.  Also, if I start getting better I want to know what did it.

So, that's what's happening now.  Another note on the Kefir - it's better than a lot of the other stuff I have had to drink because of my illnesses.  That's one good thing.  It's also lactose and gluten free.  I've actually noticed I am beginning to crave it sometimes.  It's weird.   

Wednesday, January 27, 2016

Well that didn't work...

The whole bile salt acid diarrhea medication thing was a big fat failure.  My body simply could not tolerate the medication.  I was supposed to take it twice a day.  I couldn't even take it once a day for two days in a row because I needed at least three days in between doses for my intestines and rectum to recover from the side effects.  I had pain, I had bleeding, I even had a moment where I passed out on the bathroom floor because of all of that.  It was not good.  I traded a lot of diarrhea for diarrhea, pain, bleeding hemorrhoids, bloating, and a vast supply of never ending smelly farts that exhausted me just to expel.  I think I'll take just the diarrhea.

Now I am onto another type of medication that is said to help those with Irritable Bowel Syndrome with Diarrhea (IBS-D) called Lotronex.  It's a scary drug.  It can cause a whole whirlwind of problems and could eventually wind me up in the hospital if I'm not super careful with it.  I haven't even gotten the prescription filled yet.  I am that afraid of it. 

Of course all my test results came back "NORMAL" and showed no active Crohn's so that can't be the problem.  Dr GI wants to try to control the diarrhea with the Lotronex but I'm not totally convinced just yet.  But the good news is I finally got a referral to a dietitian so I can sit down with someone and actually figure out how to eat and maybe that will help.  I do not advocate or encourage any such diet because all stomach issues are individual and what works for one person may or may not work for the next.  I fully understand that.  I'm not saying that everyone should go out and try what I am trying either because it might not be the thing that helps you.  But what I will be trying is the FODMAP diet.  I'll be posting more about that soon - once I meet with said dietitian.

Stay tuned to see how my body can screw this up too.