Remicade Infusion Day #3

I know I know, I missed a week of posting.  But shit happens.  No pun intended. I apologize for the hiatus.

I hope you all had a very Merry Christmas and a Happy New Year.  I know that sounds disingenuous or insincere, but, trust me, I’m sure your holiday was better than mine, and I’ll leave it at that.

But, alas, we forget the cruel year of 2016 and move forward to 2017.

Hello Week #1 and Blog Post #1 of the new year! Here’s to a healthy self and a healthy year.

To start on a positive note, my identical twin sister and I reconnected after months of estrangement and family chaos. And it’s nuts to think about, but I’m sure some of you didn’t even know I had a twin! Well, I do. It’s been nice having her back in my life lately, my phantom limb has been reconnected 🙂 – Mindy coined that phrase and it was an absolutely perfect way to describe us. It is probably a twin thing, but they are your person, a part of you that is outside your own body, it is rather unexplainable I guess.

As for my own body, I have yet to find a relief. I have bled out of my rectum every day for the last 3 weeks or so? Sometimes a little and sometimes a lot. I can almost feel it moving through my stomach and bowels, it’s an uncomfortable feeling like something doesn’t belong.

I have taken the Imuran booster for my Crohn’s Disease for 3 months now, and I have been taking the Prednisone steroid since around Halloween, still with no change in my issues. At least I have not had severe reactions to the Remicade, but I just want my insides to feel better like they used to.

Funny thing, I used to drink every night and stay up late, I loved to go out and do things, and I never suffered any issues. Now that I drink rarely, I’m a homebody and I stay inside and live in pajamas, I feel miserable and I ache every day.  I let go most of my bad habits and for what? For a medication that gives me more problems and medicines that could potentially kill me anyway? Chaos.

My body continues to be tender to the touch, like one big sore bruise all over. I think I’m going to ask my doctor about Fibromyalgia, or Medication-Induced Lupus, as I have many symptoms that could be systemic of those disorders.  I hurt and my body aches, I am always slightly feverish but cold, my skin is awful, I get insomnia and recurring migraines, I have depression and anxiety, I suffer from constant IBD issues, AND I have the nerve pain, nausea, and, fatigue that just won’t stop. Yay me?

I am still puking my meals, at least the ones I attempt to eat, and even the small snacks I try to force myself to stomach are coming back up, sometimes instantly and sometimes in the middle of the night.  I used to live on PB&J and late night cereal, but those things are about as bad as having a lasagna, and we all know I cannot have tomato sauce like that without repercussions.  I tell you, there is nothing worse than waking up to a late night party for one vomit session with an empty stomach.  Puking up the remaining peanut butter or stomach bile at 3 am is extra painful and exhausting.

I clearly still have the random late night insomnia, I find myself awake many times throughout the night.  Not always induced by vomiting, but rather I get restless and it’s hard for me to fall back asleep, I toss and turn and watch movies at 3 am, and when I wake up at 7, I feel as though I never slept at all.

I have even taken naps this week, shockingly, and I have fallen asleep early some nights, my body is just tired I suppose.  I went back to sleep one morning this week after Philip left for work, and just as I was falling asleep, the VA was calling me, just to remind me of my upcoming appointments, as if I don’t keep impeccable notes and schedules for these things.

My breast still hurts, that right side boob area is tender to the touch, but if I take the Gabapentin regularly I avoid the stabbing electric fence shocking pains that catch me off guard. The downside is that I suffer from the double vision and that drunk sleepy feeling when I take more than one.  It is difficult to decide which pain you want to accept. I don’t accept any of it, and I refuse to just deal with any of it.

As for the consultation with General Surgery about the breast pains, the Veterans Choice Program still had not called me to schedule. So I called them yesterday, almost a month since my mammogram and ultrasound, to see why I had not been scheduled for the appointment they originally messed up, by scheduling an ultrasound 4 days after I had one, a completely wrong appointment on their part.

The representative on the phone told me that I would have to wait yet another 5 to 7 days and they should be contacting me to schedule another appointment.  I’m sure something will go wrong with this scheduling as well, considering the last two appointments had issues from the source. (See Time Wasted)

My skin is getting worse as the days go by, so another consultation with Dermatology will have to happen.  I wonder if my childhood Shingles has returned, which would not surprise me one bit considering the amount of stress I have had in the last few weeks. Stress only induces more issues on the outside and within.  I am breaking out on my shoulders, my face, my chest, my legs and my back.  I am not sure if it is my Folliculitis or from another cause.

I also jacked up my hand around Christmas time, my right wrist on the outside toward the pinky finger has bothered me for about 2 weeks now.  I had a nasty fall at some point, so the next day I woke up to a completely black and blue bruised side of my hand.  When I feel the wrist bones the pain worsens, so I am thinking I will need another appointment with Occupational Therapy because I have injured my hand further. I really can’t win for losing.

To add to the discomfort, I lost my septum ring so I will have to wait for it to heal before I re-pierce the damn thing.  I should have known better and used a different ring for it.  The one I had in it since the piercing did not fully close, so I was constantly rotating it back before it came completely out of my nose.

This month, along with the Dentist, Neurology, Mental Health and GI, I will also get to see Primary Care for my one-year follow-up and my follow-up for my 3 months of birth control for my ovarian cyst, Myrtle. That makes 5 appointments scheduled for January thus far, not including my Remicade infusion #3, that is happening today.  And, not to mention the General Surgery consultation that I will hopefully be scheduling, again, sometime next week.

As for the Remicade Infusion #3, I got to the VA right on time today, did my blood draw to check my kidney and liver panels, and I made sure to bring a face mask just in case the waiting area was filled with coughing patients. The mask itself, I got two, one purple and the other black, and I feel like I belong in Mortal Kombat.

I was taken back to the infusion lab. I had the same nurse as last time, J, who I feel is always rushing.  She rushed through my questionnaire, she rushes through the infusion prep and she rushes to get things started, which isn’t necessarily a bad thing, but it makes her complacent and careless with me. Heck, she doesn’t even give me my beloved medical bracelet until I remind her to get me one, because let’s face it, that’s the highlight of those appointments for me.

I filled her in on my skin issues, the double vision due to the Gabapentin, my fall and bruised hand, my chronic issues and relentless nausea, my Fibromyalgia and Lupus theories, and this tingling sensation I have gotten randomly in my legs and arms, which I think I forgot to mention.  Here lately, I have had moments where my arms and legs feel like they are tingling or falling asleep at random.

Anyway, after my questionnaire, we had to wait for nurse J to call GI and Dr. S, my GI doctor. I had actually shown the nurse my skin issues during the questionnaire, scattered sores across my abdomen, shoulders, behind my ears, and she had to call and double check with GI that I could still get the infusion since Remicade can cause skin problems. Once GI gave the approval, then the Saline fluids and Hydrocortisone drip could begin, with the Remicade (Infliximab 260ml) 30 minutes later, like usual.

The nurse, J, she blew my first vein causing me to get more than one needle stick, a rarity for me since my veins are always so ‘good’.  So what could have only been two needle pokes (including blood draw) turned into three, so that explains all of the blue medical tape on both of my arms.

Once she found a good vein and got the Saline and Hydrocortisone started, and we waited for the Remicade to arrive from Pharmacy.  I made sure to bring my own blanket, candy, coffee, and of course, Harry Asshole, the rectum pillow from IHeartGuts with me.

And once the Remicade began, I tried to write, I had half a sandwich, and I napped for a short time, until 2 1/2 hours later when the infusion finished. I had just really fallen asleep toward the end of the infusion when the nurse woke me up to inform me that my next infusion would be on March 3rd and mind you, I had told the nurse this when I arrived.  Trust me, I have the next year worth of infusions timed out in my Erin Condren planner.

So far, so good. I am really hoping I do not have a migraine repeat of last time, to where I contemplated another ER visit.  I planned ahead today and took a Promethazine for nausea and my migraine medication, Fioricet before the infusions even began.

Philip had a smart idea to take some Tylenol and Benadryl as extra preventative measures because he knows once a migraine hits full effect, then there is nothing to do short of that dreaded ER trip. And I just took those, so fingers crossed I can sleep tonight without my skull and eyes throbbing in pain.

I was honored to be the inspiration for a watercolor painting this week, as you may have seen on social media.  The piece was done by @Chloe.Biggins, so check her out. I am beyond amazed and honored to inspire her art piece. This watercolor is one of the nicest things! I am extremely impressed and I love it so much.

And as for the blog, I have been creating some stickers with my coffee stain logo, so stay tuned for those soon! Let me know if you want one 🙂  I also wrote about my infertility for another website, so stay tuned for a post about that soon.

So, that’s it I suppose, another few weeks are gone, the first week of the new year has almost passed us by, and I continue to be hopeful for relief because It Could Be Worse.

Thank you for reading, and for keeping up with My Crohn’s Journey.

Please Like It Could Be Worse on Facebook for Updates!

And as always, any information you’d like to offer up about Remicade infusions or any of my struggles and issues, I have open ears and I’ll happily take any tips you have!

For those of you who are continuing to donate to the Cure for Crohn’s and Colitis, I encourage you to donate towards my team page with CURE for IBD – where 100% of the funds We raise will be allocated to IBD research for a cure. That’s right, 100%!To Donate:

To Donate:www.cureforibd.donordrive.com/campaign/icbwblog

Previous Posts on It Could Be Worse:

‘Tis the Season

Time Wasted

Remicade Infusion Day #2

The Week In Between

Remicade Infusion Day #1

Consultations and Remicade Infusions