Well, goodness, what a crazy few weeks it has been! And my life will stay a little chaotic for the rest of this month, too.
After my last blog post, No Luck of the Irish for Me, two weeks have passed and I’ve been running around like crazy. But here is Bilbo to get us started.
I’ve had doctor’s appointments, go figure, but I’ve also had interviews, new medications, and always new ailments and symptoms.
My eyes have bothered me, my hands and mouth, too.
My eyes started watering a lot, I didn’t see anything in it and I had flushed it out enough with eye drops, but it continued to water and feel irritated. I had thought maybe a stye was starting but I couldn’t see any, so I called the VA and had them set me up with my Optometrist.
I had seen them not long ago, for my styes that were happening a lot and my eyelash loss, and they had told me to call if I had any eye irritation again. (See Optometry)
The only doctor visits I make without hair and makeup are my Dermatologist and Optometrist. I figure they are going to be getting up close near your skin or face, so full makeup with my eyeliner and all that jazz is a bad idea in my mind. So, I dread these appointments of going in public without looking 100%.
The doctors at the optometrist did eye tests, looked into my eyes and lashes, I had a repeat eye exam, the doctors touched my eye with a cotton ball to test feeling, and they even put dye into my eye that kind of stung a little.
The dye actually turned my spit and snot a bright highlighter yellow color. I found this out because all of a sudden my nose began to run afterward, with a shocking fluorescent yellow color. Ew.
The doctor told me my eyes were irritated and dry and that I do have ‘tr concretions with cysts’ and ‘allergic conjunctivitis’. The concretion means there was or is trapped debris that is just in there, in the lower inside of my left eyelid. Not really bothersome, but with allergies and eye irritation, it can also get irritated.
The doctors ordered me two forms of eye drops, one for lubrication and one for itching and irritation, an antihistamine. This meant I had to leave this VA to go to the pharmacy at the other VA in town, but luckily it isn’t far
When you are ordered a prescription at the pharmacy, you must take a number and speak to an actual pharmacist about the order.
They ask and make sure you know what you are getting and how to use it, then they tell you to wait and they’ll prepare it. This time, I asked the pharmacist about my Stelara, too.
I knew I was a week or less away from doing my first Stelara self-injection and I had messaged my doctors on the VA website asking if I should be expecting it in the mail.
The pharmacist told me he was glad I asked, they had seen the request earlier in the week and they didn’t know if I was getting my shot with the GI clinic or if I was self-injecting it at home, so they didn’t want to ship this expensive medication without knowing what the plan was.
I told them I was doing it myself since I am familiar with self-injecting medications and they told me I could pick it up with my eye drops momentarily. Nice!
My Stelara, for my Crohn’s disease, I had my first self-injection, and you may already know that if you follow my social media.
I shared an article about self-injections with IBD News Today and I made a video of my whole injection process for my personal blog, you can see that here.
First, you want the medication room temperature before injecting. This helps you not feel the medication, especially cold, entering your body as much and may help prevent any pain with injection.
I ice my stomach, to numb any pain.
I prepare all my items needed:
- Alcohol Swabs
- The medication itself, whether it be Humira or Stelara
- Sharps container, and
- Band-aids
I make sure to wash my hands before because sanitation is a big factor. You do not want to get an infection near or on the injection site and you want to prevent any problems.
I bought a hard case/safe for my injection medications. I have Humira in my fridge, Ovidrel, too, so I know these medications get shuffled around the fridge and I want to prevent breaking anything since there is quite a few medications in there. A hard case/safe that also acts as a cooler is preferred, making this perfect for traveling with my meds, if needed.
The injection wasn’t bad, there was no sting or bubbling of medication under the skin at the end like Humira. It felt like nothing and it takes a few moments to get the entire shot completed, and the worst part was psyching myself up because my nerves were shot with anxiety from the shot.
I don’t understand my nervousness, having gotten plenty of shots, IVs, and even all the blood draws and stabs I got in phlebotomy school, I would have thought I was perfectly prepared. I have given myself injections with Humira, too, but for some reason I was anxious.
I planned on a noon injection but I didn’t get the nerve until after 3. Immediately after, it wasn’t so noticeable but I did start to feel bad.
If anything, I was so extremely tired! Like the most tired I have ever been. Then, my nose sinus area felt clogged. I didn’t have a stuffy nose, it just was not breathable for some reason. I began to get a migraine, too. I took Imitrex, Promethazine, and Benadryl, and tried to sleep.
It may be too much info, but every time I get medication, any medication, shots, infusions, etc., I am guaranteed to have issues the next day. I will most likely hurt all over, fight migraines and have bathroom issues that include bleeding.
I was getting hopeful with this Stelara medication, I have not really had bleeding lately, which is a big deal for my Crohn’s disease maintenance, but that didn’t last. I suffered the next few days after the injection.
The insomnia has been helped by the overwhelmingly tired effect the Stelara has had on me, so I guess that worked itself out at least.
I only really suffered a few days after the injection. The stuffy nose feeling went away, I’ve not had another migraine attack, and the only complaints I really have daily are fatigue and allodynia, with the bowel issues, of course.
As for GI, I visited with Dr. S a week after injection. I told her that I had prematurely gotten excited about no bleeding, but my body let me down.
I mentioned that I had gotten a lot of cold sores this week, with even the sides of my mouth slightly irritated and she suggested getting my B12 levels checked. I have only been tested once before, in March of 2017, and those levels were average.
I haven’t had blood draw since February, so checking all of my kidney and liver levels was needed anyway, so adding the B12 test was simple. She also noted that I had vitamin D deficiency, so I filled her in that I have a supplement for that now.
She was a little mad at me, I have lost 7 pounds since January, and before that, I had lost 7 pounds when I was seen in November. I usually fluctuate around the same weight, but sometimes I do get thinner because of my Crohn’s, nausea and constant bowel issues. She wants to monitor my weight at all of my scheduled doctor visits.
Since I am in week 9 of my Stelara treatment, I can expect to start feeling better anytime. I am hopeful because the bleeding has significantly decreased, but the rest of my issues are still here for now.
She noticed I was missing eyelashes, a large patch are missing after my eye irritation spells and dryness.
My joints hurt always, which could be my Fibromyalgia, but Stelara could help arthritis, so this may help numerous problems. I have been feeling pretty tender all over my abdomen, front and back, and the entire torso gets sore and painful to touch, that damn allodynia.
She checks my mouth, my breathing, she listens to my stomach – which is loud at this point anyway, and she feels on my shins and makes sure that I do not have any rectal sores to be seen.
We decide to wait until my next Stelara injection in May, then I will have another follow-up with Dr. S and the GI clinic to see about my Crohn’s disease management. I continue to take Imuran, probably my longest running prescription to date.
When I went to the blood draw, I seemed to bring bad luck with me. First, I forgot my current VA ID, I left my large purse at home and only brought my small one, which didn’t hold my VA ID.
I did have my SUPER old VA ID from my time in the Navy and my driver’s license, and somehow my old ID barcode still scanned, so my blood test labels printed with almost no issue. We were shocked.
When my labels went to print, the printer jammed and they had to open up the entire machine to realign the labels and fix the printer. They had to do this a few times before it was right.
And then…I must have had the new phlebotomist. I knew everyone in the lab, having worked there before, but not the girl who was taking care of my labs. She set up, got me all ready to go for the blood draw, and she puts the needle in.
Now, I was a Guinea pig for the blood draw in phlebotomy school because I have such good veins. And somehow, this tech missed my vein. And then what does she do? She asks me if my veins ‘roll’, which is really the nurse blaming my veins instead of her own missed venipuncture. Veins do not roll, you miss. It happens.
She starts probing, moving the needle around trying to get it into my vein. This was always taught as a BIG no-no in school – if you miss, try again and hold or anchor the vein in place, do not probe!
Then, she heard the other lab techs talking, and she looks away, and the needle comes out of my arm, with the specimen tube still attached inside. What does this do? When the blood tube is still attached, there is a suctioning to help the blood flow into the tube, almost as if siphoning the blood out of the vein. I told the nurse at this point she was hurting me.
When the needle exited my arm, I could hear the air and suction, and then the needle was completely out — this was also a BIG no-no in school. This causes the needle to pull or suck the blood out and causes it to pour from the vein. And pour it did.
There was blood coming out of my arm, there was blood on the needle, somehow it ended up everywhere all of a sudden. It was on her hands, her lab coat, and then she realizes what she’s done and called another tech over to come help her, one I know. They clean me up and prepare to try again.
Mind you, the tourniquet has been on the entire time, my hand going numb.
To add to the bad blood draw experience…as she accidentally removed the needle from my arm by not holding it in place, the needle scratched my skin on the way out, leaving a visible scratch following the puncture wound — this is something else that should NOT happen.
The needle is sharp, it will scratch if you press it into the skin, especially when nurses press the needle with gauze as they are removing it, scratching the patient on the way out – you do not want to press down on the needle.
The phlebotomist I know, she grabbed a butterfly and got my blood draw finished in another vein, no issue. But, the other vein, it has become blood-bruised, a hematoma.
My hands though, damn – They Hurt. They hurt constantly. I’ve had to wear my braces to prevent using my thumbs and wrists. I want new spica splints.
Lumpy may be coming back for his trilogy, it seems. First, we aspirated it, then we cut it out, and now I think it is returning.
70 days since the ganglionectomy and my wrists hurt constantly, and now when I look at it, it looks like there is a small lump beginning to show once again.
I am going to monitor it for a few days and if it continues to swell like last time, where it doubled in size in less than a week, then I’ll be calling to see the surgeon way before my scheduled June follow-up.
Otherwise, I have had three interviews, with three more planned in the next few days. I feel exhausted running around like a mad person, with so much to do and so little time.
I will mention that I also got sent letters about Grand Jury duty and I was selected to serve. I cannot say much other than I will have to go in once or twice a month for the duration of a YEAR. I cannot wait to share my experience when it is all over.
I still continue to share weekly columns with IBD News Today, sharing a new post every Friday. Since my last blog, I have written How to Use Self-Injecting Medications, going through everything about my Stelara shot and how to do it safely. Tomorrow, there will be an article about Deficiencies of Vitamins B12, D with Crohn’s Disease and IBD.
IBD News Today has even shared more images and quotes from my column, which I appreciate and share like crazy across all my social media.
I’ll see Neurology in a few weeks, and I’ll mention that my nightly Melatonin and Mirtazapine cocktail has lost its effect. I have been up numerous nights, sometimes until 1, which isn’t so bad, but often I am up until 3 to 5 to 7ish. Somethings gotta give.
My nerves have also been hurting with everything else. I have mentioned before that the right breast sends shock like pain randomly, so I have to make sure to take my Gabapentin religiously.
I do apologize for the timing of these posts. I have not been doing well with writing for this blog and I am almost ashamed of that. I used to post weekly, then bi-weekly, and now it comes whenever I find the time to sit and write. I will note that I have been researching every night. Just this past evening I went through an 845-page file of my past medical history, with doctors notes, blood tests, etc. trying to research my own health history for future use. But, I will do better.
Otherwise, I am the same. Living the Crohn’s and Fibromyalgia dream, right?
For me, It Could Be Worse.
And as always, any information you’d like to offer up about infusions or any of my current struggles and/or issues, I have open ears and I’ll happily take any tips you have to offer!
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IBD News Today Column:
Welcome to ‘It Could Be Worse’ – A Column by Mary Horsley
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Previous Posts on It Could Be Worse:
Getting Hopes Up To Be Let Down
2 Year Anniversary of Crohn’s Diagnosis Day | It Could Be Worse Blog
Always Another Appointment | It Could Be Worse Blog
Stelara Infusion & Ganglionectomy Pain
Crohn’s Disease Essentials and Emergency Kits
itcouldbeworseblog.com 