Consultations and Remicade Infusions

I’d like to start by saying thank you to all the welcomed followers who read this blog weekly. I know some weeks can be chaotic and others can be slightly boring, so every view is appreciated.

Like many other weeks, this week had its ups and downs, it’s events and its downtime, the good and the bad, all rolled into 7 days of blah.

I began the weekend with dizzy spells, and a feeling similar to that of a heavy night of drinking that leads to the spins. You know, the feeling where the more you try to gain control, the more you spin out of it. It was recurring and it was making me so sick to where I had to sit down at times for fear of collapsing.

The Gabapentin, the nerve pain medication, was causing me to almost black out, with the prescribed 300MG 3xs a day, so with a phone call to the father-in-law, we lowered my dose to only once a day. He was shocked I had been prescribed such a high dosage, and said that it takes ages for him to prescribe a dose that high.  I have since taken it only at night, and the sharp pains in my breast have gone down in occurrence, but the side-boob still remains tender to the touch.  It’s so odd.

When I went into the VA Tuesday, I had to meet Primary Care to see about my chest.  My doctor gave me a breast exam and continued the referral to General Surgery for a consult, and they added a pneumonia shot since I was already there.  Ouch.  I got a nice selfie before I had to disrobe and let the doctor “feel me up”.  She thought me saying that was outright hilarious.

Because General Surgery will not see me unless I have a mammogram first, I will have a mammogram and a breast ultrasound scheduled in the upcoming weeks. Something has to explain the sharp pains, right? Nerve pain didn’t just show up, did it?

Since the VA doesn’t offer the mammogram or ultrasound at the Lexington location, I will have to use the Veterans Choice program again and have my appointment elsewhere. This means more paperwork and a third party being involved in the appointment, much like the Double Balloon I had in August. I will more than likely have them done in Georgetown, which is conveniently closer, but it could take a minute longer to schedule the appointment.

The Veterans Choice program already called me to clarify my care preferences for both the mammogram and ultrasound, and for the General Surgery consultations; preferences, I have none.

After the breast exam, I immediately had my mental health appointment and therapy session next door.  This doctor, Dr. C, is a very nice older man who lets me vent for an hour and tries to help me de-stress from everything occurring in my life, medically, emotionally and physically.  The appointment went well and I didn’t cry this session! Before getting a ‘permanent diagnosis’ of depression, anxiety or the like, I will see a psychiatrist, another consultation needed, and Dr. C suggested coming to a group therapy session that the VA offers. We shall see…

Since I did not speak with GI last Friday, I attempted to call Dr. S on Monday, on Wednesday, and again on Thursday. She is a busy woman! She had sent out for my infusion consultation on Monday, and she had intended to call me back with more information, but I assume she got busy.  Wednesday, the same story.  I called but she did not return my call,  again.  And then by Thursday, she was in a meeting all afternoon at the VA, so I wasn’t getting through to her, but finally Joanna from GI called and said the infusion center would be calling me, and that my stool and blood tests had come back.

My Crohn’s issues this week have been extra active.  I have had constant issues, I blame stress, and I continue to vomit, even waking in the middle of the night to puke bile.  That’s definitely fun to wake up to.  I’llspare you the other fun photos I take for the doctors.  The prednisone is making me hungry, I ate a pint of ice cream one night and then I threw up that pint of ice cream, but we are sad that I am still having puking fits and the Prednisone hasn’t helped that.

We have thought maybe my cocktail of daily medications could be inducing the puking and nausea, meds working against one another, but in order to know, we would have to cut off everything and add things back slowly.  I think I’m on too many regimens to stop them all at once. I don’t want any of my ailments returning or getting worse.

And now, for the Remicade.  The infusion lab called me to schedule my infusion this afternoon.  My first of the three loading doses will be the day after Thanksgiving.  That makes a week from today.

It’s somewhat intimidating, and yet, it’s exciting to think my body won’t hurt, that I won’t have so many issues and that I can eat my favorite foods again (read: hot sauce and ice cream. Not mixed, of course).  The nurse told me to prepare to be there a few hours, so I plan to bring a goodie bag of things to keep me busy and warm, like my crochet items and my Bengals snuggie.  I am slightly eager to bring and use my Rectum pillow, just so I can say things like “Who brought the asshole?” or “The asshole’s with me.” I am hilarious. Ha.

Considering that may mean my infusions will always happen on a Friday, respectively, I may have to change my blog post days to Thursdays, or just post a day early for those occasions. We will see.

The loading doses for Remicade are given on week 0, 2, 6, and every 8 weeks after that.  If this works, I’ll get around 6 infusions a year, and I could be out into remission as early as a few weeks. Now, I will probably have side effects, and I will probably feel bad days after, at least for the beginning, but we are extremely hopeful this medication mixed with my Imuran booster can bring me some relief.

I re-colored my hair this week, and I finished yet another week of class, with 1 week until I complete this capstone course.  I reordered some migraine meds, to prepare for the hectic week ahead, and we put out Christmas decorations and lights.

We go into this next week hopeful and thankful because It Could Be Worse.

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

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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!

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