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!

May 2018

I have been having a Crohn's flare lately and am going to try some Rowasa. I'm in so much pain and bloated.

I'm anemic. I don't really know why but I am. I can't take iron supplements because I just can't digest them. I don't know what to do. I eat as much as I can. I take gummy multivitamins but it's not enough. This is probably why I'm sooo exhausted. Not to mention I'm trying to quit caffeine and smoking. Lord, help me.

My arthritis is so so but restless legs is killing me and keeping me up. I see my rheumatologist in a few weeks so i guess I'll be bringing it up to him then. The stelara injections seem to help a good bit of the pain but I still get searing pain up my back and in my hands so that's something we still need to work on.

I already take antidepressants and anxiety meds but sometimes I go through rough patches where I feel so down for no reason at all. It's really to be expected with all I've been through. I'm always terrified of going somewhere and being sick or in constant pain. It's very PTSD-like. It's a panicky dread of leaving the house. If any of you feel this related to your IBD, please know you aren't alone. And I promise, you'll get through it!

UPDATE 2018

Here is my year so far:

I've been under stress so I've had a bit of a flare. I'm on Rowasa as needed for that.

My arthritis is bad. My rheumatologist thinks he may need to double my stelara dosage.  So we shall see.

I went to donate blood today and couldn't because my hemoglobin is 9.6. Guess i get to start some iron for that. But i have no idea why it is so low! Ugh!

About a month ago, i fell off a chair and scraped up my entire side, took a chunk out of it and hit my head pretty bad. The wound got infected because of my suppressed immune system. It's all healing now! It's going to leave a huge scar. And i had some brain trauma so I have to go back to my neurologist.

Updates to come!

Just Another Crohnie Day

I finished the Rowasa a month ago. i don't feel any different but my inflammation (C reactive protein went from a 6.8 to a 2.9) has gone down. i still have diarrhea and it's making me really sore!

I have spinal arthritis and the pain has been unbearable for the last year. so bad i had to quit the gym, i couldnt stand to cook, i couldnt even bend over to tie my shoes. About a month ago i was referred to a pain specialist and he injected nerve blockers in to my spine. my arthritis doctor is giving me steroid shots in my hips for bursitis (might be why my crp went down).  i feel soooooo good now! i even rejoined the gym! he hasn't gotten the stelara approved (hasn't been trying either) but he gave me samples last week so i could start it. im hoping that gives him the push to work on insurance approval!

i took a Pound class...dancing with drumsticks..this week and omg...it was a WORKOUT! I made the mistake of doing the same day as my steroid shots so i was HURTING! but it was a blast and awesome cardio so im going back for sure!

I've been trying to eat healthier. It's bot easy when healthy foods make you sick...thanks a lot crohn's! but im doing my best!

thats all for now! updates coming soon!

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.

My Back

Omg my back is killing me. I keep trying to work out but it's making my back so much worse. It's hard because I want to lose weight so badly and taking any break affects my self esteem. But i can't make my arthritis worse either. I have to call my doctor...again...about my medicine. Im going to talk to scheduling and make them leave a message because i left a voicemail on the nurse and doctor line almost 2 weeks ago and no call back yet. Like im not in excruciating pain smh.

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!