2019 update

So im waiting on my keyboard to come in so I can really blog. It is so hard to do on a phone!

I feel like my Crohn's is the same. Same diarrhea, same pain. No change. My spondylitis is so bad. My sciatica is always hurting. Stelara isnt helping. I go to physical therapy once a week and it helps but after a day, im back in excruciating pain. But ill accept that day. It's better than nothing! Dry needling and massage is a god send. I highly recommend needling or acupuncture. You can actually immediately feel the difference! I get severe pain in my legs and this helps me be able to walk better. I love it!

As soon as my keyboard comes in, my posts should be much better and frequent!

Another Day of Me and Maybe More?

Originally this blog was started to help me process every thing I was going through with my stem cell transplant. Then after it all calmed down, i stopped writing. I automatically assumed I had nothing anyone would want to hear.

Im learning now, I need to write for me and in the process, I hope someone reads and relates. My greatest wish is that someone can learn from my journey, from my pain, and it can help them. We all know Crohn's doesn't just affect the body, but it alters the mind as well. Sometimes all we need is someone else who gets it. You know, REALLY GETS IT!

I hope that as I start back writing more often, God will give me the words that you may need to hear.

As for today, remember you are special and loved. Crohnies United!

Not again

My heart has been broken and now im experiencing severe anxiety, stress, and depression.

As we all know, that also comes with a crohns flare up.

Unlike other people who get a nervous stomach when they're upset, i have to worry about more longterm effects.

Needless to say, i hate this disease

ER Visit: Nothing New

I'm at the ER for the first time since December 2016. I've been having increasing pain in my right side. Originally, I went to urgent care because I figured it was a flare up and i didnt feel like the ER wait. But it was too late in the day for them to do imaging so the doctor there urged me to go to the ER...even called ahead and sent notes.

5 hours later, I was finally given pain meds. He gave me Nubain, which I have never had before. Have any of you ever heard of it?? Now that he says he's suspecting a flare up, I'm just waiting for discharge. You all know how pain management is for us...one dose isnt going to do any good but asking for more makes us look bad. Smh. I hate going to the ER for this very reason. I would rather sit at home and suffer than be made to feel bad because I asked for something for the pain. I mean really...look at my medical history! You can clearly see I'm not an addict, I'm actually sick!

Sorry! Rant over!! Lol

Being prescribed more steroids. Even though i dont think theyll help the crohns, I have some respiratory issues going on too so I think they'll help there.

Will update you all soon!

All Backed Up

I ended up back at the ER the other day. I hadn't used the bathroom in 4 days, as most crohnies know, this is rare. Last time this happened, i had a bowel obstruction. So i went in, waited for hours, only to find out i was really backed up but no obstruction. 2 days later i finally went. My stomach was hard as a rock and i was in so much pain. But now im back to going like 5 times a day. Gotta love crohns and it's unpredictability...

No Rest For The Weary

I cannot sleep. I take ambien and my doctor just started me on mini press for ptsd nightmares. But no sleep. None. Nada. Nothing.

I have slept a matter of a few hours over the last 3 days and I'm taking sleeping medication.  It shouldn't be like this! Last night at 5am I broke down and went to the store and bought 2 bottles of nyquil to use over the next week or so. I also bought some sleep aid similar to zquil.

I ended up taking half a bottle of nyquil and 4 doses of sleep aid before i got to sleep. That lasted 2 hrs. Not even a full 2 hours; it was a broken up and down 2 hours. Ahh!!! I feel like im going crazy!

Insomia, you're a bitch. JS.

Back Pain ER Trip

So i started having these severe, sharp pains in my back around my kidney and in my abdomen just below my ribs. It was hurting so bad, i couldn't sleep.

As much as i didnt want to, at 3:30am i caved and came to the er. I prayed on my way it wouldnt be a long wait or else i was going home and suffering through the pain. But God answered my prayer and there was no one in the waiting room.

They gave me fluids, pain meds and nausea meds to help..and they definitely did help. The doctor ordered blood work, urine tests and a ct scan of my kidneys.

All the tests came back great. Even though i suggested it may be my arthritis, the doctor feels its more likely a crohn's flare.

He gave me pain meds to go and is starting me in prednisone...yay, moon face will be back...😑😑😑

Praying my rheumatologist can get me on meds for my back and hoping my GI will figure out my flare (I have an MRI on December 10 and a cold in January).

I should be discharged in like 15min. Im ready to go home and sleep now!!

When You Live With Pain

I have been diagnosed with spondyloarthritis. And i cannot sleep! Even though im on ambien for my insomnia, the pain is relentless and i get no more than a few hours of broken sleep a night. I'm starting to get beyond frustrated with the fact my meds havent been preauthorized yet and my dr won't call me back.

When i saw him the 1st time, he asked my pain level. I told him a 10 because it was. I could barely move, walk, sit. I cant even bend over. He said no a 10 means you wouldnt be sitting here talking to me right now.

Hold on. Let me tell you something! For over a decade, i have been poked and prodded, been through chemo, a stem cell transplant, every test imaginable, felt like i was giving birth to my intestines 15-25 times a day, was malnourished, had multiple picc lines, almost died twice, had surgery, have given my self injections for years, broken multiple bones, had my bones drilled in to 3 times and God knows what else. I am not a stranger to pain. Just because you can't read it on my face, doesn't mean it doesn't exist. It just means I've been through Hell already so I know how to walk through fire.

Please don't underestimate my pain, based on my facial expressions.  You haven't live through what I have.

Spondyloarthritis

So i have been having some serious back pain on top of my normal joint pain so I went to see my rheumatologist. He diagnosed me with spondyloarthritis. That is basically spinal arthritis. Im going to be giving myself shots twice a week of Acthar. I'm waiting for insurance approval now....ugh! I'll keep you posted!