So what's it like to have Severe Crohn's?

What is it like to have a Chronic illness? Let me give you insight into what it's like to have Severe Crohn's.

It sucks. It sucks because people don't believe that you are sick because they can't "see" the illness. They don't see you suffer... Physically, Mentally, Emotionally. They don't see the painful inflammation in your intestines that causes bloating, upset stomach, gas, ulcers, bleeding, nausea....
They don't see the countless trips to the bathroom,... the anxiety of having to eat and knowing you will feel sick every time because of it.
They don't understand the pain of eating, the stomach cramps, the embarrassment of having to excuse yourself right after a meal because you are nauseous just from consuming food.... of any kind.
They don't understand the feeling of constant urgency and fear of urgency to use the restroom. Imagine when you've had a stomach bug, how you couldn't stay out of the bathroom, ... everything you ate upset your stomach and you felt weak. Imagine this on an Everyday Scale. For the rest of your LIFE.

Now Imagine having to be diagnosed .... meaning many doctors visits, needles prodding and poking you, Doctors "Examining" you.... (more probing) then pressuring you into "Colonoscopies" and medicines that are rather questionable. Now after being diagnosed, you are told this is a DISEASE you will have until you DIE. You will have to Live with it for the Rest of your LIFE. You can't just take some Medicine and it goes away. No.... it stays. You work around it. You explain to people Why you can't go certain places or can't make lunch dates, but they always assume it's because you are blowing them off.... when in reality, you are wore out from doing chores around the house the day before, or you ate something that tore you up the night before and now you are too dehydrated and weak to get out of your bed. It will take several days, if not a Week to recoop. But you have to keep going because it is expected of you.

Imagine what it feels like to not have the energy to play outside with your son and run around catching a ball because you ache constantly and are so exhausted, you have to sit in a chair and watch him play. He is growing up before your eyes and your body has bound you to a quality of life that limits the interaction with your child. How do you tell your child that you can't go to the park because there are no bathrooms? No benches? No place out of the sun? We make sacrifices for our child to see them happy and we plaster a smile on our face like a mask so our child doesn't have to see our suffering. Imagine being so anemic and dehydrated that you can't do anything but Sleep all day, all night.... too weak to go from the couch to the bathroom without passing out. Then you finally end up at the hospital for a week to get a blood transfusion, 20 bags of IV antibiotics due to being almost septic from a fistula that was abscessed because of the Crohn's.

Do you know what it's like to have your child see you so close to death on many occasions that he won't let you out of his sight because he's too afraid that something will happen to you? Do you know what it's like to have an 8 yr old experience that kind of worry?

I have had bowel disease since I was diagnosed at the age of 11. I have been through hell and back ... but no one knows because I just don't tell anyone about it unless they ask and even then, I don't go into too much detail, because their interest is lost. But today, I want to inform people what my life is like. I am only 33 years old and I am on a Chemo Class drug that has the potential for me to get Cancer. Guess what? I have a spot on my arm that I have looked into myself, and I do believe it is a cancer spot after the research I've done. I am at a point in my life that my Quality of life is really SUCKING right now. The Remicade makes me ache, have brain fog, makes me exhausted all the time, among other things. Plus, you have to have constant blood work done to make sure certain levels are fine and not getting unbalanced.

Imagine what it feels like not being able to hold a REAL job and make money to be able to contribute to your family. Imagine racking up thousands of dollars worth of medical bills that in turn brings down your credit score. You begin feeling like a waste of space, a human money pit.... you begin to question the meaning of life since it's quality is so poor at the moment. You daily fight with the feeling of not belonging simply because you feel like crap on a daily basis and people who say they care don't really get it and write you off.

Imagine what it feels like to be trapped in a body that betrays you and your immune system is fighting with you. You have to be put on medicines that ruin your hair if not make it fall out, medicine that makes your teeth rot, your hands rough to the point that No lotion actually helps and your loved ones get scratched when you touch them. Medicine that makes you gain weight, only for people to ask "when are you due?" ... Medicine that damages your eyes,.... your liver.... constant headaches, body aches,..... and all of this Just to keep the "Symptoms" at bay. At Bay.... Not healing it, just ... survivable.

Life is not fun when you are just Surviving. It's a living Torment.

I am sure people have judged me and written me off because of it and I've gotten to the point where I don't care anymore. I have learned that I have to do what I have to do to keep me alive for my son and my husband. My son and my husband need me more than anyone else on this planet and I've come to the place in my life that I finally have to put My health First so I can live to be 70 & 80 years with strength..... I want to see my son grow up. I want to be more active in his life. I don't want to be on the side lines anymore. I want to be a better mom and a better wife. I don't want my son and husband to see me cry from frustration at not being able to do more than I can right now. It's a fight for them as well. They have seen my suffering, they have seen my tears,.... God has heard me cry out to him for help.

This is my life. This is my daily struggle. This is why I need to move to CO so I can ENJOY life again.

I am not going out there to be a "Pot Head". I am going out there to be a Cannabis Refugee. I am going out there to use a plant that GOD created that has multiple healing qualities so that I may Enjoy the life he has given me, Not just merely Survive. I have had enough "Survival" and I'm ready to take back my life... to stop Suffering and to begin Thriving.

"Life"... such a word taken for granted.

And yes.... this was an extremely difficult decision. I will be leaving behind my parents, my brother and his family, a dog, a cat, my son's birth place.... I have been on an emotional roller coaster because of all of this... but this is the best decision for me and my family.
But keep in mind, I am only moving a few states away, not 6 feet under. I am only a phone call away,.... a letter dropped in the mail, a text, a plane ride away.

One of those days...

 I guess today is just One of those days. One of those days that Anxiety tries to shake me.... really hard. All because of a stupid jerk on facebook... someone I don't even know. I know, it shouldn't bother me, but now I have a whole new thing to think about and question....

We are moving to CO, ... are the people there going to resent us for moving there because of my reasons? I talked to a family member,... who said no.... 
but I shouldn't give 2 craps about what a stranger thinks. I think sometimes... that's my problem. I care TOO much. Always thinking about others, trying to make sure they are comfortable.... at my own expense most of the time. Either way. 

As you can see, today's post is more rambling than anything. Sometimes getting it off your chest just makes you feel a little better... a little less crazy.

There's so many... "Worries".... the drive out there.... the adjustment,.. the whole Moving my child out there, moving away from my family but being closer to hubby's family..... Will I be able to finally skate again? Coach? Finally lose weight? So much spins in my head it's dizzying. 

Lately, I've been listening to the same songs over and over on youtube of fan mashups of Suicide Squad Songs.... oddly they really relax me. Here's some of them.....

"Mad Hatter" - Youtube   

 "Blood Stream" - Youtube  

"Gangsta" - Youtube   

"Toxic" - Youtube

Scary Things

Today I went in for another Remicade infusion. It took 3 tries and a couple of different people to get the IV in.... not including blood work later,... that was only 1 stick. About 40 minutes after getting the infusion underway, I had a reaction and it was scary. I had a hard time breathing and my face and chest flush red and hot. The nurse stopped the IV for a little while to see if I would feel better. I eventually did and after they consulted the doctor, they piggy backed another Saline to the Remicade and made it go slower so i could get my "meds" in me. What a seriously scary experience. Being that there are only 3 or 4 Biologic meds out there right now, I have to have this work as long as I can,... or at least until we can make it out to Colorado.... (for the whole "alternative medicine" thing) and I can get off these Big "Meds".  

Having a "Chronic" disease like Crohn's, you tend to feel backed into a corner,... trapped. 

If you don't take meds, you can go into a flare up, bleed out, severely dehydrate and potentially die. (Yes,.... it has killed people) 

There is always a feeling of being a slave to medicines, doctor's visits, and the constant fear of not finding a bathroom in time. The feeling of Peril comes when, You know you have to take meds or flare and possibly die from it all.... or take the meds and have the crappy side effects. Let me remind you that Remicade is a "CHEMO" class drug. Some people have lost their hair from it, developed other serious conditions or even cancer. This is what I really really want to avoid. (Thus creating a GOFUNDME  so I can raise funds faster to get out there ASAP for "Alternative Medicines")

My friend made a post a couple of days about about her being the 1% of people who experience "Crohn's Like Symptoms" with this certain antibiotic and she told me I was Superwoman to put up with such things on a daily basis. At least she will be back to "normal" after a week... but it was nice for someone to get a Glimpse of my world. 

Giminy Crickets

   Good Morning everyone!
  How goes it in your neck of the woods? I am currently frustrated... I want to watch Deadpool and I remember seeing the DVD in a weird place, now I can't seem to locate it. Oh well, it will turn up in a bit, I imagine.

   What has everyone been up to? School started for us,..... it's back to routines and quiet time in the mornings for me! I've been feeling crummy on and off for the past couple of months. One reason was because of one of my meds... so I stopped taking that one, I'm now doing better. Still having some issues, but... trying not to freak out at the same time can be tricky.

   I must admit, I'm ready for cooler weather... I wish it could stay about 70 degrees year round,... but then again I could just move to Hawaii. Yeah,... not going to happen. lol I say this, but it is really awesome to live in a state with 4 seasons, not just "Hot, Hotter, Hotter than Hades, & You've Entered Hell" kind of heat, (I lived in Florida for 20+ years).

   Yesterday was a bust for grocery shopping with my mom, but my husband took me after work once I was feeling up to it. Although we didn't get our plans done, I did get to meet the Seamstress in town who used to have a store front. I had seen her in the thrift store before, I just didn't know that's who it was. She's pretty awesome and I told her I, too, sewed. She told me if I ever need help to give her a call. I wish I would have known her 4 years ago when I really started sewing, lol

   Have you seen "Suicide Squad" yet? There was a few things that could have been better, but I have somewhat become obsessed with Leto's Joker. I also keep finding the music videos on youtube to play over and over.

   Anyway, that's it for today! Thanks y'all for stoppin' by!

Coping with Crohn's Disease - My Journey

  Crohn's Disease. Yeah, I know, I've heard people say it... "That's an Old people disease! You are too young to have that!" well, tell that to my immune system and bowel. When I was 11 I was first diagnosed with Ulcerative Colitis. I was 11... that was not fun. Know what happened? I saw blood in my poo. Yeah. Scary. I told my mom... then I got scared and wouldn't tell her anymore and I kept it a secret for several months. But, then she found out. I went to several Pediatric General Doctors who... "Examined" me. I will leave that to your imagination. [[ shudder ]] Then I was sent to a Gastro Doctor... a specialist. I ended up having a Colonoscopy done, but prep was WAY worse then! You had to drink 2 gallons of this salty junk to clean you out (drink it ALL day) and have enemas several times that day and the next morning as well. For an 11 year old young girl, it was very traumatic. 

  Back then, we didn't have "support groups" or google for information. We were told what it was, sent to Shand's Hospital in Gainesville, Fl. for more doctors and STUDENTS to "Examine" me. I tell ya, those students could have learned what KY Jelly was! Ouch! Then I was told "I had it for life",... I remember crying my little eyes out,... I was no more than 50 lbs, I was a tiny little thing. Later they want to give me Steroids.... "Experimental" steroids... enough in one dose for a 200 lb. man. I was maybe 50 lbs. My parents said no. 

  So, fast forward years later.... I'm an adult, I refused to go to the Doctors anymore because of the Trauma I've been through as a child... not to mention all the BLOOD WORK they want to do. I'm surprised I had any left. Now I get married at the age of 22,... still having constant flare ups which means lots of blood loss, exhaustion, severe diarrhea, nausea, loss in appetite, weight loss, 30 trips to the bathroom a day....  I have a few ER visits from Dehydration. I get pregnant at 24 and OMG, pregnancy was a Nightmare for me. I lost 30 lbs in the first Trimester (first 3 months)... I was in the ER 11 times in 10 weeks and admitted twice into the hospital for Low Potassium. (Did you know that if your potassium is too low, you can have a heart attack?! It controls your heart beat and rhythm) 
So, I end up gaining 50 lbs in about 4 months from Prednisone (at the time I didn't know it was from that) once I got past the second trimester. I had to work on my stamina for standing up more than a few minutes because I had been bed ridden for so long. 

  I gave birth at 35 weeks (5 weeks early) to an amazing little boy who was 4lbs 10 ounces and 18 inches long. We only stayed the weekend ... he had to have 36 hours of Billy Lights and they sent us home on Monday.  Now, I can say my son is doing amazingly well, he is going into second grade and is up to my shoulders in his height.  

  It pains me to see him worry so much about me being sick. I was in the hospital last year for a week, had a blood transfusion and a scare of nearly being Septic from an abscessed Fistula... all thanks to Crohn's.  I was re-diagnosed as having Crohn's and I have been put on 2 different medicines. Now I'm on "Biologic" medicines, which brings down my immune system, making it easier for me to get sick. Also, there is a Long list of possible side effects, one of which is Cancer. I have to go in every 8 weeks to sit for 3 hours for an IV of my medicine all while a nurse watches and checks me for reactions. After it's over for the day, I go home and sleep for the remainder of the day.  

  Crohn's may be an unseen disease, but it causes so much pain and trouble. You don't see that I could be in pain, You don't see how it affects me emotionally, how it affects my family.... 

  Right now, I can't be in direct sun light because of the medicines. A couple of Saturdays ago, I had a yard sale. I was under a tent in the shade and I got Heat Exhaustion and became ill. I have had to cancel plans with friends because they want to do something outside in the heat or someplace that doesn't have public bathrooms. This may seem silly, but to me, it's a huge stress because I want to be social, I want to be with people, but the anxiety of getting sick or not making it to the bathroom is all too real.