Remicade Infusion Day #2

Like most weeks in my Crohn’s journey this far, this week was similarly filled with doctors visits, phone calls, unnecessary drama, and, scattered throughout, there have been a few highlights of the week to brighten the mood.

After Friday’s blog was finally posted (The Week In Between), Philip and I went to dinner together, and we spent the rest of the weekend on the couch, napping and watching movies in the warm house, staying out of the cold as much as possible.  Remember, I freeze.

The Gabapentin medication that I have been taking for the Pleurisy/Neuropathy (nerve pain) in my right side side-boob area, it has continued to cause me drowsiness and double vision, so I have to just close my eyes, and try to nap or sleep, usually with no luck.

Come Saturday, I napped for a few hours! WOW!  Sleep was something my body just needed I am guessing.  I have still had insomnia on random evenings, with daily vomit sessions and Crohn’s issues, it was about time my body broke down on me and I was forced to nap.  Trust me, I may be home a lot with my Crohn’s issues, but napping is not something I do often, it is a downright rarity for me.

That night, I made the best steaks I have ever made in my life, and I was extremely sad throwing it up.  I am SO. OVER. IT.

Due to my afternoon nap, I had insomnia throughout the night and early morning on Sunday.  I didn’t even go to sleep until 330 A.M. on Sunday, but I was wide awake by 5, went back to sleep and awake again by 9.  I have a wonky sleep schedule, it seems.

Sunday was filled with Bengals football, Who Dey!, and loads of coffee.  Philip surprised me with a new HUGE coffee cup, so I have had almost 2 pots of coffee every day this week.  It helps when the new cup keeps my coffee warm and drinkable for like 5 hours. I am obsessed with it, thanks, babe! 🙂

With dinner, I made chocolate chip cookies for National Cookie Day, an added bonus to the evening and Bengals.  Otherwise, I was useless for the weekend except for the little homework that I did.

What homework that did not get finished Sunday, was completed and submitted Monday night, meaning that I am another week closer to being finished with the course, and finishing the certificate.

 

Oh, to make matters worse, I almost had another Crohn’s disease accident on myself.  I have so much going on with my body, you would think enough is enough.  I do not need to be in public and having Crohn’s disease issues or accidents and unable to prevent it.

Tuesday night, more insomnia.

But, the highlight, in the overnight hours, the It Could Be Worse Blog page on Facebook finally hit 400 likes!  I cannot begin to explain how ecstatic I was to see that!  Thank each and every one of you who read this blog and for those who give the best support a girl could ask for, and I thank you again because I have received some of the kindest words of encouragement.  You guys keep me writing and venting and sharing my story.

Especially Murphy and Chris.  You two are the BEST! 🙂

Wednesday was nothing to write home about, with no exciting moments other than being up with insomnia again and getting approved for my very first Blog + Instagram Giveaway! – More Details to come! 🙂

And, by Thursday, I was wishing for another boring day.  On Thursday, I got to get my first mammogram ever and a breast ultrasound, just so I could see General Surgery next Tuesday about the right side side-boob pain that has been ailing me the past 2 months or so.

Let me tell you, IT WAS NOT FUN!  When they tell you they smoosh your breasts almost flat they are NOT kidding, and go figure this appointment could not go smoothly without some sort of mess due to paperwork.

I get to my appointment, as scheduled, around 1 PM.  I checked in with the nurse in her tiny glass office, she asked questions about history, insurance, and my visit today, and I am told to wait in the lobby, it should be no time at all until I am taken back.

When the nurse calls me to come back into her office, she informs me that the Veterans Choice Program (see my rant on that here), well, they had scheduled the appointment incorrectly.  While they had the order for the ‘basic mammogram’, I actually needed a ‘diagnostic bilateral mammogram’ meaning ultrasound and both boobs checked out.

They had completely forgotten my ultrasound in the appointment ordering, and they had not planned ahead to look at both breasts, only the problematic one.  I tried to explain that the letter I received in the mail had me approved for anything imaginable, so I am not sure why they only scheduled a basic appointment?

So, the nurse tells me that she was going to call TriWest, the Veterans Choice Program scheduling program and that she would come get me from the lobby once it was taken care of.

Once the order came in, the nurse gathered me from the lobby and we went on our way to the Radiology lab.  I was given a bracelet and paperwork to give the lab personnel, and then we got to wait some more.  I always get deja vu when I come to this lab since I had my transvaginal ultrasounds done here, too.

Well, get this – by 2:45 I still hadn’t been seen, and the nurse in the lab comes to tell me that the paperwork she has is wrong, too.  So, I explain the dilemma that I already went through today at the front check-in desk, and she said she knew that, but the paperwork was still wrong.  They had sent the exact same paperwork we already had.  Good thing I got a bracelet this visit, or else I’d be more upset.

So, I tell her to get on the horn and try to get it fixed, and so would I. She told me the cut-off time for the radiologist was 3:15, so I had 15 minutes to figure this out or else I was going to have to reschedule.  Rescheduling was again, not an option because I needed this appointment for the appointment onTuesday, or else I had to reschedule both.

I called the number I had for the Veterans Choice Program, and I get on the phone with a female.  I tell her the situation, how we have already requested and received ‘new’ paperwork today, that I am physically at the appointment, now for 2 hours, and the Veterans Choice Program is the one who approved this appointment, to begin with, so how did they schedule wrong?  She tells me that she will send over the correct paperwork, so I give her a direct fax number to this office to save time, as we only had around 7 minutes until we made the cut-off.

She tells me that she sent it all over, electronically, so we should receive it immediately, but it did not come.  Precious minutes went by, and I could tell she wanted to get off of the phone with me, but I refused to get off the phone with her until the fax went through.  And so, she hung up.  SHE HUNG UP ON ME! GAH how that makes me extremely LIVID!

I immediately angry call the Veterans Choice Program back, and I am even more unpleasant than before (I feel bad for the poor girl on the phone who gets stuck with me).  I am angry talking AT the lady at this point, trying to get my displeasure and my point across, while also trying to get the CORRECT paperwork, as the clock just hit 3:15 and I have nothing.  It was this time the radiology nurse flags me and lets me know something was just sent through.  So I hung up on them this time. #petty

With the correct paperwork, finally, I am taken back and the appointment is done backward.  Usually, they do the mammogram first, then the ultrasound, but since the mammogram was in use, we flip-flopped since I had been there for over 2 hours at this point.  With my new coffee mug, I probably drank another pot of coffee just waiting.

The ultrasound portion was a piece of cake.  I was taken to a large waiting room and told I could change anywhere.  There were 2 changing areas with drapes, a bathroom, or the main area, filled with chairs and a television.  I was given a hospital gown and commenced the selfies. Another nurse came to get me, walked me down the hallway and I was taken to the ultrasound room.

The nurse lubed me up and she looked around.  There were a few times she stopped, highlighting dark areas in the image, marking a few places with sets of crosshairs, but otherwise, she didn’t tell me anything.  She handed me some baby wipes to clean my chest off and that was that.

I was taken back into the waiting area that I changed in, with lube on my hospital gown and my phone ready again for loads of photos, clearly.  I was not looking forward to the smashogram, I had heard it was uncomfortable and painful.  And boy, it WAS!  This new nurse told me she would take four images, two of each side, one flat, and one at an angle, and that if I was having pains already, then she would not be my friend today, as it does hurt and will hurt me more.  I was given more baby wipes to clean my deodorant off of me, and we took 6 smashogram images, with the two extra views of the bad breast.

Each time, I thought for sure my breast was going to explode at the nipple and the contents of my breast come out.  But, seconds later, right as I think it may burst, the image would take and the pressure screen would lift, relieving the pressure and releasing me from the torture device.  I was also kind of on my tip-toes, the face-plate where I put my boobs was too high for my reach.  I felt like I was in the Navy again, needing a footstool for everything because I am so short. (5foot1, ladies, and gentleman).

Each time we imaged my breast, we had to readjust, with the nurse flattening my breast, and almost smoothing it out onto the faceplate.  And then there’s me, holding, no, physically hugging this machine, holding my body and breast completely still.  The nurse, she would get me into the position she wanted, let the screen come down and smoosh the living hell out of my breast, and she would run to her machine to take the image quickly.

She told me that ‘they’ would contact me either this evening or the next morning with results, and I was taken back to my waiting room to get dressed.

Let me tell you, my breasts hurt the rest of the day and again today, Friday.  They almost feel completely bruised and slightly heavier, and probably worse off considering the right one was already tender to the touch and it just got nearly popped like bubble wrap.

I made lasagna for dinner, and of course, it did not settle well with my stomach.  We wanted that for dinner so we could have it twice so that I wouldn’t have to cook or prepare anything on Remicade infusion day.  I hate beautiful homemade dinners that are ruined with vomit sessions.  I am hopeful this Remicade treatment creates some changes soon.

And finally, for today.  Blog Post Friday and Remicade Day #2. I slept terribly, as usual, but I got up and had to my face and hair again since I knew I would be at the hospital all day.  I hate going to appointment’s feeling and looking like death, so Hallelujah for beauty products that make us all pretty.

Philip drove us to the appointment, thank goodness since I had double vision from the Gabapentin and all my Infusion Day morning medications, which included my beloved migraine meds, Fioricet.  Everything in my vision gets slightly blurry, almost like they are filling with water.  Either way, I was up and at it this morning.

We knew we had to stop by the blood draw lab, for my Kidney and Liver panels, so we checked into the Infusion Lab and then went back to the Blood Draw Labs, where I had left my VA ID with the attending to get me in their system.  It seemed like everyone and anyone was being seen at the VA today!  There were so many people in all of the waiting areas, I probably should have been wearing a surgical face mask, as Philip pointed out to me.

The entire waiting area was filled with middle aged vets and seniors who were all there to see some form of a doctor, some sick no less.  My GI doctor had told me to steer clear of large groups of people and to steer clear of sick people.  I was getting two birds with one stone here.  Next time I go to the doctor, beyond this upcoming week, I will have my own surgical mask I will bring with me as I will order one, or make one, ASAP.  Thank you, Pinterest for the sewing patterns!

I give my blood, let the Infusion lab know I am back, and we are eventually taken back with my Nurse of the Day, Jesse, who would be with me all day, checking my blood pressure and infusion rates and times.  She weighed me, asked me the ‘how am I?” questions, and she hooked me up to the Hydrocortisone drip and ordered the Remicade to be made.  (The amount given is based on patient weight, so it is made at the time needed).

Philip went to get lunch, while I played on my phone and waited the allotted 30 minutes with Hydrocortisone to begin the Remicade drip.  The Remicade came later from the pharmacy than we had expected, we waited on it actually.  But, since this was not my first time, the paperwork portions went quicker, so we got to be finished quicker than Remicade Day #1.

Philip and I were eating lunch when the Remicade came, and I got to throw that up before the infusion even started.  I have never broken any blood vessels before, but I have a few small red spots in both of my eyes and eyelids from vomiting so hard and so often.  I imagine the next good puke I have will cause me some noticeable bloody eyes.  Won’t that be great?

I brought my own blanket and my rectum pillow that I have mentioned before with me to the infusion.  I named my Iheartguts pillow Harry Rectum, and he will accompany me to all my GI and Bowel related appointments if I can remember to bring him.

Since it finally was sent over from the pharmacy, the Remicade, I sat with my blanket, pillow and power juice working its magic, while Philip took a nap and I tried to call about my mammogram and ultrasound from the day prior.

I had still not received a call back with my results yet, so I called the Georgetown Hospital and spoke to a girl who told me the results had been sent, so she would try calling my primary doctor, Joanna, because she would be able to tell me the information herself.  So, I call the Leestown VA, while sitting in the campus VA, trying to reach a doctor, when anyone could possibly open the results on their POS system.

It’s baffling the loops I have to go through.  I had to speak with telephone care and leave a message, as per usual.  Delaney, my nurse called back, and she had not received any form of paperwork.  We seemed to be having a repeat of the day before.  She told me she would call TriWest, maybe they got faxed to their number instead, and I told her I would call Georgetown back because someone clearly fibbed to me about them being sent from there.

I called Georgetown, and I remembered to remember the girl’s name that I was speaking to, so if I did have to call back, again, I would know.  She informed me that both reports were completed, but neither were sent over to the VA, or anywhere  Again, I beyond irritated, but I was still in my infusion.  I kept my cool, told the girl what was going on, gave her Delaney’s fax number, and she told me that she would send them right over.  I made sure to tell her that if the reports were not in by 4 (it was 2 PM), that I would be calling her back, and I made sure to call her by her name just so she knew that I knew it.

The Remicade infusion was done shortly after, rather quickly if you ask me, and we were on our way home by 2:40, a whole hour earlier than last week.  Maybe showing up on time actually matters? HA!

On the way home, Philip had to stop at WalMart, and I had wanted to stop there anyway, to see about a glitter Poop Emoji coffee tumbler that I had seen online, they did not have it. I found something significantly better.

In the children’s aisle, we found onesies for $4.  We picked out an XL Child, thinking that would be decently sized for an adult, (which it was!), but we had to dig through the pajama kiosk to find one, any, that was a Child’s Large for me.  We found one, finally, with polka-dots, hearts, the color purple (for my Crohn’s), and “I Heart Naps” written all over it.  Like I mentioned before, I don’t really ever nap, but this was my only option from the rack, so we went with it.  I may shop the kid’s section more often.  So, if you don’t know what to get me for Christmas, now you do!

In the milk aisle, getting coffee creamer for me, Delaney called me back and told me they didn’t think my mammogram or ultrasound were anything to be stressed about at the moment, they saw something, possibly just swollen lymph nodes inside the breast, but they did want a repeat of the smashogram and ultrasound in 6 months, just to be safe.  Great, I get to do that all over again next summer. 

She told me to keep the General Surgery appointment scheduled this Tuesday, as they may still want to see me since it was an ER consult and I was still tender to the touch.  They may say nothing, they may have another idea of what could be causing the pains.

As soon as we got home, we walked the dog, and once we got home from the coldest walk of my life, I got to finally wear the pajamas, and begin writing this blog.  I apologize for the latest post ever and the longest, but it has been a stressful and eventful day, even more so than I am allowed to share here. Phil had the lasagna for dinner, I skipped.

I know this week is filled with a lot of information to take in, so I appreciate you making it this far.  Next infusion in the loading doses, January 6, I will better prepare myself for blog day and try to be more productive than today.

Through it all, it has been an okay week, to be completely honest.  Not my worst, but it ranks up there with the worst of the worst when I think about the boob pains.

Next week, I will see my therapist and I have that General Surgery consult I have mentioned a few times.  I will finish week 2 of this course, and I will try to prepare for the Christmas break.  We are ecstatic to start on our gifts this week and to see everyone again for another holiday.

Fingers crossed the next few weeks give me some Crohn’s issue relief, and we look forward to another crazy, hectic, stressful, drama-free week that lies ahead.

Because It Could Be Worse.

To top it all off, since we just passed midnight, and before I forget, Pantone selected the 2017 Color of the Year as Greenery.  I have to say this color matches my hair 90% of the time PERFECTLY with the yellow-green tints!  Thank You, Angela! 🙂 2017 will be my best year yet!

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:

www.cureforibd.donordrive.com/campaign/icbwblog

Previous Posts on It Could Be Worse:

Remicade Day #1

Consultations and Remicade Infusions

ER Déjà Vu & Veterans Day Weekend

Chest Pains & ER Visit #3