Thursday, November 26, 2015

Happy Thanksgiving!

I have finally received some GREAT news!  I received the letter in the mail and my Social Security Disability claim was finally given a FULLY FAVORABLE decision.  In just a few more months I should start receiving the help my family and I have waited so long for.  I had my hearing back in October.  It was the most nerve wracking day of my life, I think. 

I fully intended on walking into the hearing, sitting down like a BOSS, and being all like...

This is what I actually looked like...

But now, I'm just totally and utterly relieved.  The waiting, the struggling, the worry and regret, it's almost over.  I'm truly thankful.

Friday, November 20, 2015

The Uncomfortable Side of Chronic Illness

I need to say some things so others know and also so I can remind myself.  Sometimes I get so lost in what others think and their misconceptions and preconceived notions that I forget the truth of what life with multiple chronic illnesses is really all about.

Let me enlighten you as to what it is like for me lately.  This morning, around 4:30 am, I was awoken from a very good sleep - which doesn't regularly happen a lot because of insomnia, and I didn't actually get to sleep until well after midnight - by the urge to move my bowels.  Cramps, diarrhea, painful wiping and the anxiety of how much longer I will have until it happens again consumed my sleepy mind.  I managed to get back to bed and laid there, uncomfortably and not sleeping, until around 7:00 am when I had to run to the bathroom again.  Now this time there was much more anxiety.  You see, we only have one bathroom.  My sixteen year old daughter has to get ready for school and is usually in the bathroom around this time.  She keeps her time in the bathroom very short and accommodates me when it's possible, but damn, does that make me feel bad.  A girl needs her bathroom...poop issues or not.  I'm stealing that from her.  Immediate thoughts of how much I suck as a mother and how she must hate me started filling my already anxious mind.  Self hatred and depression creep in and are coupled by complete and utter frustration at my non cooperative body.  I really hate myself.  For so many reasons.

Luckily this morning, the fates allowed me to slip into the bathroom, die from the diarrhea, and slip out before the kid needed in there.  However as soon as she was finished, I was back in there for the third time this morning.  More painful cramps, more acidic diarrhea that burned my whole perineal area, and more self deprecating thoughts.  I thought I could just go back to bed.  I am just so tired and weak.  But as soon as I get comfortable it happens again.  Back to the bathroom.  I'm so drained from doing this over and over and over again. 

Now I'm up.  I am obviously not going to be able to go back to sleep.  I can't take a shower yet because I might have to poop half way through.  Alright, I'll blog.  So here I am.  I've had four more episodes of this diarrhea and it's only 9:30 am!  This will only continue throughout the rest of the day because this is my life lately.  All I can manage to do anymore is poop and mentally tear myself apart.  The doctors seem to think I'm totally healthy.

My furry little baby dog Loki is sleeping beside my on the couch snoring away.  He's curled up on his favorite blanket without a care in the world.  Meanwhile, I'm sitting here trying to keep the thoughts I want to write straight in my head.  My head is pounding with a dehydration headache.  My butt hurts.  My lower belly hurts. I'm nauseous.  I'm so tired.  I'm exhausted actually.  I need to take a shower but I have no energy.  It's all I can do to type this.  I weighed myself today.  I've lost seven pounds this week alone.  I'm not exaggerating. This is Crohn's disease.  This is bowel disease.  But the doctors won't acknowledge it.  Not that I can go see the doctor anyway.  No money for the copay. Waiting on SS Disability to come through...still.

I'm hanging by a thread, but the world thinks I'm okay.  The doctors think I'm okay.  My parents think I'm okay.  My friends think I'm okay.  I try my best to portray okay but you know what, I'm NOT okay.  Nothing about this is okay.  This is why I cannot remain positive.  This kind of illness just destroys you, physically and emotionally.  I don't think regular people realize that.

I recently had a post about my Game of Perfection and how I continually have to put all the pieces of my life back together again and again. It's changed me so much.

Most people who knew me just one year ago probably wouldn't even recognize me today.  Not that my looks have changed that much.  But I have changed.  I have had to endure way too much.  My husband and daughter and I have been through so much in the last two years alone that I don't honestly know how we have made it this far.  But to all the people who think I've changed, lost my faith, am not who I used to be, seem bitter, or have completely "backslid" guess what, you're right.  And the reason is because I have had to manage this, all of this, all of the chronic illness, pain, depression, anxiety, financial ruin, waiting, not receiving the help I need from doctors and the government, all of this and more - I did it alone. Aside from my husband and a few key people in my life (and I mean about three other people literally) I have been abandoned by everyone. I'm must just be too much of a problem that they can't be bothered with.  Too many people believe that if it doesn't affect them directly, why bother with it at all.  My "Christian" friends have taken to the "I'll pray for you" route.  That's all well and good but how about a loaf of bread?  How about a can of soup?  How about you call me on the phone, or better yet, come to my house and check on me.  Ask me if I'm okay and if I need something.  Because I do.  I need a lot of things.  I need help.  My family needs actual tangible help.  Not prayers.  Not good vibes.  Not good thoughts.  And definitely not sayings like: "Everything happens for a reason, in God's time."  "This too shall pass."  "Things will get better." And my personal favorite,  "God's got great things in store for you." ( For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and future." )  Yea?  Bullshit.  I'm already harmed, I have no hope and seriously, can I have just one peek at these remarkable plans God has for me?  Because so far, they suck.  His plan sucks.  I hate his plan.  His plan is stupid.

Chronic illness does not work like this:

YOU say:  You're depressed.  You sit at home all day. Come over to my house and I'll tell you all about the wonderful things in my life.  We'll do something fun.

I think:  I really don't want to leave my house.  I haven't showered in four days.  I'm too exhausted. I have no way to get there and if I did I can't afford gasoline for the car I have to borrow.  I don't think I'll make it there without having to stop and use the bathroom along the way and what if I can't get to one fast enough. I'm entirely too tired to drive safely.  I've been up all night with pain and diarrhea.  I'm not sleeping.  I'm scared. I don't want to come and hang out and pretend to be okay.  I'm not okay.  My body hurts and I physically cannot do anything. But I don't want to hurt your feelings even though listening to all your stories and looking at all the stuff you spend tons of money on will make me even more depressed.  My husband is struggling to work and shuttle our daughter around to her special Nerd school and her job and do everything for her because I'm a deadbeat parent.  My husband is doing the best he can to do just about everything, but we don't have enough money to buy groceries this week.  He needs help.  My husband needs a break.  He needs to be taken care of too and I can't do it.  Chronic illness is hard on the caregivers too.

I actually say:  I'm not feeling great today, can we do this another day?

YOU say:  No, I have plans every other day.  I really think you can do this today.  You're fine.  And get here soon, it's getting late.

I think:  I can't make plans.  I'm unreliable.  I hate myself.  I'll figure out a way to do this for you.

I actually say:  Okay, I'll be there as soon as I can.

This is what should happen:

See the difference?  YOU come to me.  YOU inconvenience yourself because I'm already inconvenienced in 86,392 different ways because I am a sick person. Come to me.  Sit with me.  Lay on the couch with me and watch a movie.  Brush my hair.  Rub my feet.  Tell me all the things you love about me.  Offer to do my dishes or run the vacuum.  Laugh with me about the stupid things my dogs do during the day.  Stay with me at my house, where I am comfortable, and talk to me about things that I want to talk about.  Stop showing off your perfect life for five minutes and focus on me - just me.  I'm sick.  I need help.  I need special treatment.  I need special considerations.  Just hold my hand.  Put your arm around me.  Hold me.  Make me feel like I'm worth something.  Pet my dogs.  Hug my husband and thank him for taking care of me and doing the best he can.  He is doing everything he possibly can and you know what, he has a chronic illness too.  He's had two brain surgeries and has irreversible nerve damage and chronic pain and numbness because of it. There are life long repercussions from nearly dying from bacterial meningitis, staph infection in your blood and a Syringomyelia caused by Chiari Malformation.  He's not in much better shape than I am.  He's a champion.  (Thank a Vet?  Hell, THANK A CAREGIVER!)

No, I don't want your pity.  I don't want you to feel sorry for me. What I do want is your compassion.  I want your understanding.  I want your help.  I want you to know that just because you say "it'll be okay",  right now it is very, very far from being okay.  Just because I laugh doesn't mean I'm not dying inside.  Just because I show you a happy smile and seem interested when you tell me about the new things you just bought or all the great things you are doing, doesn't mean I don't want to punch you in the face because I can't afford to go to the doctor and get my medication right now and I know you could help me but are choosing not to.  It also means that when I am alone I am going to fall further into depression because my daughter will be home soon and there is nothing in the house for her to eat.  It does mean that I am going to cry myself to sleep again tonight because I have only have one roll of toilet paper and it's only Tuesday and my husband won't get paid until Friday and I've been so sick lately I'm using a whole roll myself every day.  Think about what your actions and what you are saying is doing to me.  To sick people in general. 

So that's that.  That's what's in my head, in my heart.  That's my despair and my wish for others to understand. To every other sick person out there, I'm truly sorry you are sick.  And I promise, I'm going to continue saying all the things that most others just keep to themselves.  I'm tired of being the only uncomfortable one.

At least you don't have cancer...

Monday, November 16, 2015

Money makes me really, it does.

Why does the status and severity of my health problems wax and wane depending upon my financial status?  I see the doctor and I'm somehow in devastating peril that will cause me to need many more visits to the doctor, many, many expensive tests and bottles upon bottles of medications.  However, when it's time for another appointment and I don't have my co-pay and I call and let the office know this, I need to reschedule my appointment, I am all of a sudden cured.  "Oh, well Doctor doesn't have an available appointment until three months from now, would you like that one?"

Really?  I thought it was imperative that I saw doctor in six weeks.  I thought doctor wanted to make sure I was doing well and make adjustments to my medications, if necessary, so doctor needed to see me now.  I need a prescription refill of something that doctor said I couldn't just stop, but you won't refill it unless I come in and physically see doctor.  What do I do about my medicine now? Oh, I'm no longer a concern when I don't have my co-pay at the time of my visit, I see.  It isn't as important for my medication levels to be checked and for the doctor to even look at my chart now.  I can immediately stop this medication now because I can't afford to come in and see doctor to get it refilled.  Fantastic.  I'm feeling better already.

If the government would get it together and get my disability started I wouldn't be in this problem and I'd be able to take care of myself better.

Thursday, October 29, 2015

New Hobby

I'm trying to channel all of my bad feelings into something more positive.  I've started drawing, doodling, coloring, abstract arting - whatever you want to call it.  I drew this last night and finished it this morning.  The purple Crohn's ribbon is where I had my resection.  I don't know if this is considered "good" but it made me feel better just doing it. 

Wednesday, September 30, 2015

The Game of Perfection

My life is like a delicate game of Perfection. It takes me forever to get all the little pieces of my life in order and put in the right place, but once the pieces are all where they belong, life is worth living.  I want to be alive.  I want to see what each day brings and I'm basically happy.  All is right with my world.  Depression isn't as big of a deal.  I can handle pain and sickness better.  I don't worry so much and I'm less anxious about everything. But inevitably, in as quick as 30 seconds everything in my life explodes. All the pieces go flying and I have to scramble to get them back where they belong.  The more often my Perfection game explodes, the longer it takes me to find the pieces and put everything back together.  And the more I have to continually play this horrific game of Perfection the less I want to. It's not fun.  I'm forgetting where everything goes and why it matters so much because it's all just going to blow up again anyway. 

Sunday night my stomach started hurting in a gnawing, burning annoying kind of way.  It had been feeling that way for the previous few days off and on but Sunday night it just wouldn't stop.  Through the night it continued to wake me up and I had a few bouts of diarrhea which didn't necessarily hurt anything - but it definitely didn't help anything. Early Monday morning I placed a call to Dr GI and left a message for further instruction and I took a pain pill that, as you'll remember, Dr GI had just prescribed me for my most recent flare going on in my colon.  I was also taking the Entocort and Pentasa again.  Remember, the CT scan from July that showed the inflammation in the colon and with my current symptoms and all Dr GI decided it was a 'member.

About an hour and a half after took the pain pill the pain had not stopped or even eased up at all.  In fact, it was a little worse.  I felt horrible.  I still hadn't heard anything from the doctor so I knew it was time to call my husband.  I had to go to the ER.

Well in true ER visit form, it sucked.  I was at the ER, I was in pain, every single person that came in had to ask me a million and one questions fourteen times because no one ever reads the damn chart or talks to each other.  Then they did another CT scan test like I had just had done at the end of July when I was there.  They gave me some pain meds - nothing.  Still in pain.  They gave me a different pain med - it helped.  Not a lot, but it was something.  During all of this I spent at least four hours explaining to the various MDs, DOs, Hospitalists, Interns, Attendings, Nurses, Janitors, and general administration the essence of Crohn's disease, how it has affected me, my personal history with it, the various medications I have been on and what my GI was currently doing to treat the flare up in my colon that he said I was having based on the CT he looked at from July taken at the same ER that I was at currently. Frustration doesn't begin to cover the range of emotions I was feeling.

All my lab work came back fine.  My CT scan showed some inflammation in my colon. They didn't use contrast on this one like they one they did in July but whatever they saw they wanted to put me on IV steroids.  It took forever for me to convince them that they needed to contact my regular GI because I cannot take Prednisone anymore due to what happened when I was on it in 2009.  See THIS BLOG POST as I describe some of the side effects I was having from the Prednisone and after much discussion with Dr GI at that time, it was determined I shall never again have to be on Prednisone.  However, the current doctors at the ER didn't read the script.  No one was listening to me. 

After several hours of waiting, it was determined that I had to be transferred to a different hospital because my GI didn't have privileges at the hospital I was at. (even though they are all owned by the same Super Corporate America Company that thinks they know about how to run healthcare better) So I got to ride in an ambulance to the next hospital so I could be admitted for pain management and observation and more testing and torture.

Once I got to the second hospital, a slew of doctors and medical people came in.  One right after the other.  They were all literally hanging outside my door waiting for the next person to be done.  Every doctor had to come in and mash on my stomach and listen to my heart and lungs.  Breathe deep.  In and out.  Where does it hurt?  When did it start?  What does it feel like? Blah, blah blah.....   Eventually they decided to give me some pain and nausea meds and they put me on IV Prednisone. They slipped that in there before I knew what was happening.  The GI who was covering for my actual GI wouldn't come see me until the next day and then he would decide what to do.  I was assured this "one small dose" of steroids wouldn't hurt anything despite my not wanting steroids.

SIDEBAR:  I take a lot of medications.  I am strict about how I take those medications.  I don't like it when people fuck with my meds.  Every time I go to the hospital they fuck with my medication.  They give me my day meds at night and my night meds during the day.  They never give me enough of my medication for the acid reflux issue I have that feels like acid is burning a hole in my throat because the recommended dosage isn't what I take - I need more.  Even if I tell them they have everything mixed up and I take certain things at certain times and take more of certain meds than recommended because that is what works for me and my doctors all know this - NO ONE EVER LISTENS and they just do their own thing.  I was already irritable.  Now they are fucking with my meds and they had me on steroids.  Can you hear the Perfection pieces starting to pop?

The next day after even more doctors came in and asked all the same questions again and again and mashed on my stomach again and again no one really said anything to me.  I mean, I literally had one head doctor lady who didn't seem to know anything, two other doctor people telling the head doctor lady about me and two med students standing there doing nothing.  They were all talking about me but no one was talking to me. I asked questions and the only thing anyone ever said was they wanted to wait and talk to my GI doctor - who wasn't even my GI - it was the stand in doctor and he still hadn't come to see me yet.   The general consensus though was that my Crohn's was flaring and needed treatment.  OK.  I knew that.  I was in a bad flare.  I got it.  I've done that before - I can handle it.  All this made sense. Until the nurse happened to offhandedly mention a few hours later that I needed to start my colonoscopy prep at 5pm that night because I was scheduled for a colonoscopy at some unknown time the next day.

I hadn't eaten for two days and counting.  I was in pain.  I wasn't even having that much diarrhea because of the lack of anything in my system.  I did NOT want a colonoscopy. I could not endure the prep - and they were discussing enemas.  OH HELL NO!  Dr GI just did a colonoscopy in January.  The CT scans proved it was my Crohn's flaring.  I didn't need a colonoscopy.  And why the hell didn't anyone actually come and tell me that was the plan?  Anyone like one of those eight million doctors that came and mashed on my stomach and listened to me breathe?  I have to have special considerations when I have a colonoscopy.  I cannot take pain meds while I'm prepping because I will most definitely shit all over myself.  I was in the hospital to get said pain meds because my pain was that bad but now I couldn't take them?  Why were they doing this?   Why wouldn't anyone talk to ME?  I wasn't consulted through any of these decisions.  I demanded to see the GI and I wasn't nice about it.  I was already not getting my meds normally so my anxiety was reaching a level that was dangerous.  I could feel it.  I was seething. 

Stand in Dr GI finally came in and sat down and we talked.  Enemas were immediately taken off the table.  I would be given the proper sedation I needed and I could only do half the prep because I didn't need all of it.  He knew I was pissed.  It didn't matter.  I was having a colonoscopy the next day.  I was so exhausted it was hard to continue the level of upsetness that I had reached.  Anxiety took over from there and I just began to panic.  I was awake all night because I was afraid if I slept I would shit all over myself because of the prep.  I hadn't slept the night before either because of the pain and being in the hospital sucks.  And the night before that I didn't sleep much because I was at home dealing with the pain.  I was beyond exhausted and beyond anxious.

The colonoscopy was done the next morning.  It showed nothing.  No Crohn's.  What?  The doctors wanted me to have another CT scan with contrast.  The kind you drink that is like a laxative.  Like the laxatives I had just endured the night before for the colonoscopy prep.  Like I needed anything else to make me poop.  I was hurting.  I couldn't have the pain meds and more laxatives.  I reached a point where I just couldn't do anything else.  I was done.  I quit.  I mentally checked out. 

Here was my thinking:  If they did more tests they weren't going to show anything anyway.  There is no Crohn's.  No reason to be on the steroids (which I later found out was 40 mg of Prednisone they were injecting into my IV at least twice a day but I think it was really three times a day)  I was NOT going home on Prednisone.  I didn't need to be on anything for Crohn's because they couldn't find it - again.  No reason for the pain I was having.  No reason to go through more tests.  No reason to be in the hospital.  No reason to live.  No reason.  I have played this "I feel horrible and I'm having pain and diarrhea and all the other symptoms of Crohn's disease without having Crohn's disease" for years now.  Not weeks, not months but YEARS!  Years of my life wasted on being sick with no cause.  Every last piece of the Perfection game had popped.  The pieces were everywhere.  All I could do was cry.  I just cried.  Hysterically.  For hours.  The gang of doctors and students came in my room to try to talk to me finally, but it was too late.  What happened was not one of my finer moments.  This picture sums it up.  I'm pretty sure at least one of the student doctors is still rethinking their career choice.

After the nurse and several other doctors - even a resident doctor that had nothing to do with me or my case - offered me an Ativan and some time to "calm down and make a rational decision when I wasn't so upset", it was settled that I would go ahead and have the CT scan with the contrast and it would be later that day.  Except it wasn't.  After waiting and anticipating for six hours I was told that two techs in the CT department went home sick and I wouldn't be able to have the test that day after all.  I was allowed to finally go home and follow up with my own GI.  They realized the CT scan was pointless, I guess, and I was supposed to continue the Crohn's meds I was taking before I went to the hospital.  No changes. Let's pretend like nothing just happened.  I went home.  I was still in pain.  I was probably in more pain because now every piece of my Perfection game was out of it's perfect little place and some of them weren't just out they were lost.  And lying in a hospital bed for three days caused my Fibromyalgia to rear it's ugly head.

I called Dr. GI the next morning.  After review of what took place at the hospital I do not have active Crohn's.  I was supposed to continue the Pentasa but not the Entocort.  Did I mention I received at least six doses that I know of for sure of 40 mg of Prednisone via IV in the hospital that I was now stopping cold turkey?  I'll be ok - no one seems to be concerned about that.  (FYI: I'm still NOT ok)

So what now?  I honestly don't know.  I don't know what I am going to do.  See, those pieces of the Perfection game, they are all popped out.  There are some that are gone forever.  I lost them at the hospital.  I lost the ones that were hope, meaning, faith, fighting and caring.  I don't care what happens to me anymore.  I don't want to fight anymore.  I've said before that I was done and then somehow found some inner strength to get through.  But now, now is different.  I'm really done. There is no more inner strength to draw from.  I don't care anymore.  I'm done with medicine for problems I don't have.  I'm done trying to get people to listen to me.  I'm done fighting to convince people that there is something wrong when clearly, there isn't, or it would've been discovered and treated by now.   All this fighting I have done for all these years has not been worth it.  I haven't won anything.  I haven't been given a break.  My family has gone through hell.  My body has gone through hell. I am emotionally in hell.  No one would expect me to endure abuse this long.  Why do I have to continue to suffer?  With no reason, no cause, no relief, no cure?  I'm tired now and I just want to go home. 


Thursday, September 17, 2015

Being a Sick Person

I've not been feeling well lately (I know, big surprise) so after an ER visit, a CT scan and a trip to Dr. GI, it was confirmed that my Crohn's is flaring in my colon again.  I'm back on Entocort and Pentasa and Dr. GI said if I'm not better in a month we'll have to talk about an anti-TNF drug like Humira or Remicade.

I've felt horrible for so long but it's always been "nothing" because all the tests showed "nothing" being wrong.  Now all my tests are showing stuff wrong and it's becoming real (to others) that yes, I am an actual sick person.  It's not in my head.  I'm not making it up.  I'm not crazy!  The way I feel is finally justified. And that's how I felt for the first few moments.  But now reality has set in and I am kinda freaking out.  I'm sick. I have something wrong with me for real - a disease.  I have to take a lot of medications and they have big scary names and even worse side effects.  My body is going to get worse before it gets better.  I could have complications.  I could need surgery again.  I'm scared.

Sometimes I spend so much time trying to be the perfect Crohn's warrior.  The activist who has it all together.  I've been there, done that and made it through and so can you!  However, I'm back there again and I don't know how to process the feelings of being a sick person who is actually a verified sick person with real tests and proof.  I fought for so long for someone to actually listen to me.  Pooping as much as I do isn't normal.  The pain I have isn't normal.  And I was right.  So now what?