As part of my “I will get relief and not taking no” resilience, my rheumatologist and I met again to discuss next steps and options after the dermatologist’s treatments weren’t working for me (insert last blog). I agreed to switch biologics from biweekly injections to infusions to get better efficacy and hopefully cure the cracked bleeding feet and overall better efficacy for my autoimmune disease. Super glue and new skin can only do so much and it’s not a long-term solution for me.
Some folks have asked me about the medications I take. I have taken a different set of biologics and DMARDS since 2000. A biologic is “I disease-modifying antirheumatic drugs (DMARDs), which means they attempt to slow or stop the processes in the body that cause joint damage. They target a cytokine, or protein, called tumor necrosis factor-alpha (TNF-alpha) that causes psoriasis and PsA.” ~ https://www.psoriasis.org/biologics/
Switching to another old tried and true biologic, Remicade sounded reasonable and not so bad when described to me. A 2-hour IV infusion every 8 weeks. They have nice comfy chairs and free snacks and drinks. Not bad I think. It was a potential treatment when I was first diagnosed but my super busy high-tech life wasn’t conducive to 2-hour treatments. I figured I run my own coaching business, I’ve got time and control over my schedule. I can do this.
Resilience illumination – Having a can-do attitude is critical to being resilient.
I must keep my can-do attitude is my mantra. This attitude has served me well in my professional life and personal life. I can do this. I can get IV infusions. I can do this.
The first infusion treatment, I nervously drove myself to the appointment and brought my iPad thinking I’d get work done. I really hate needles and really don’t like IV’s. I have rolling, collapsing veins that can be hard to find that make the process painful. I
’m welcomed into the infusion room, and I see a few folks hooked up to their IV’s, one’s sleeping and another man is tying away on his laptop. I think it's looking like this won't be so bad.
I’m directed to a nice comfy recliner, covered in plastic for Covid precautions, with 2 cup holders. I plop down and the nurse takes my vitals – eh gads my blood pressure is high, I’m nervous for sure. Next another nurse brings me some prep medication to take by mouth – oh nice, Tylenol for headaches and Allegra for allergic reactions. I think to myself, OK, I read about this and it’s normal – let’s hope for no reaction or headache.
Next thing I know the next nurse grabs my arm and preps me for the IV, no numbing or anything, whammo and it’s in. Thank God it was in with one stick. The meds sting a bit at they go in but not too horrible. I begin to relax and recline back for the 2-hour infusion. About 30min in, I feel super woozy and sleepy, I fade out for a while. I awake when the furiously typing laptop dude’s infusion is finished and beeps. Off he goes and I realize I’m the only one left and it’s only been an hour. I have to use the restroom and I ask the nurse to help me unplug the I. I never thought I’d be rolling my IV to the bathroom while being infused.
I feel woozy, weird and awkward with people from the waiting room all looking at me with pity and glancing away. I manage to get back to the infusion room, thinking, I feel stoned or drunk and why didn’t they warn me. The last hour I remain awake freezing and feeling sick to my stomach. When I’m done the nurse lets me know that next time I can ask for a blanket and pillow and suggests I dress in layers. She gives me my infusion schedule, I ask if I can change it. No, this is your schedule and it cannot be changed due to how the medication must be ramped up. The control freak in me is not a happy camper, I feel like crap and have no say in when these infusions are. They happened to be at a work inconvenient time. I leave irritated, sick to my stomach, super woozy, concerned about driving, and hacked off about my lack of control when I do these infusions.
Resiliency illumination 2 –You don’t have to do it alone. Yet, I did.
I have that darn saying on my website, I say on social media, I tell clients this. You don't have to do it alone. But, what did I do, I chose to do it alone. I didn’t ask for help or for anyone to drive me. I figured how bad could it be? I’m fiercely independent but sometimes that’s a detriment. I continue choose to do it alone. I don’t want to ask for help or myself and I don’t want anyone to give up their busy life for a 3-4-hour period of time. I have family & friends who would be there for me. I choose not to ask for help and the last couple of infusions were less problematic. Still reflecting on this topic.
The second infusion is in 2 weeks as part of the ramp up. This time I go prepared, dressed in layers, with water, snacks, laptop and headphones. I ask for a blanket and pillow. This one is not so bad and I don’t feel so woozy afterwards. The next day however, I’m flat out fatigued and I have a crushing headache. I can hardly get out of bed, I’m so tired. Thankfully, I blocked some of my day off but the entire day. I slog through some coaching clients and sleep more than work for two days. I’m annoyed that I feel so tired and fatigued. I want to feel better not worse.
Resiliency Illumination #3 – Look for the good
During the 4-week period between infusions, I notice that my feet may actually be getting better and starting to heal. They are not getting worse. I’m fatigued for longer than I feel I should be but, realize one day that I have little to no arthritis pain. I take a moment to thank God and write down my gratitude for potential healing of feet and feeling pain free. Thinks are looking good.
The 3rd infusion is at week four – I’m feeling pretty good and my feet seem to be healing. I go in prepared again with layers, water and snacks. Ready to knock this out and take a day off to recover. This time, my fears and worry about a “bad” infusion came to fruition.
The infusion room is packed, apparently there’s been a shortage on some medications and a shipment came in so people are making up their missed infusions. Next, the nurse cannot seem to find a vein. She keeps sticking me, then she starts digging, I let out a loud ouch, she asks, am I hurting you, YES, I attempt to calmly reply trying not to faint. After 5 sticks she finally finds a vein a good one as blood shoots out as she’s gathering my blood in vials for testing. I’m nauseated and wiped out and we haven't even started. I hate IVs. I’m having a moment remembering this very thing happening when I had my first child and screamed a and cussed out the nurse. I let my nurse know I’m trying to be very understanding and kind but this is not OK. I let her know I’m not cussing or screaming so be thankful. She quietly brings me a pillow and blanket and apologizes for the 100th time.
I get settled in and try to relax, read a bit, write a bit, I feel sleepy but cannot sleep due to the beeping of IVs and noise in the room. I get super annoyed as glorious Glam-Ma shows up in her designer clothes dripping with her swanky jewelry. She’s not wearing her mask over her nose, then takes it off to eat and call on her speakerphone loudly. Glam-ma scowls at me for staring at her and giving her the stink eye. I scowl back best I can with my mask on. She was the last straw for me and my annoyance dripped off me.
I finally decide to close my eyes and meditate the stress away. I meditate and perhaps doze for a bit and it’s over. This infusion was OK other than the IV pokes that left painful bruises for over a week. I feel ok on the drive home and sleep for a day. Next infusion is now 8 weeks away thank God.
Resiliency Illumination 4 – Be flexible and kind
I really had to dig deep to be flexible and not terrified to do an infusion in a packed room during the pandemic. I wanted to walk out. I had to dig even deeper to breathe and be kind while being poked many times for my IV. I had quite a story in my head going about Glam-Ma but decided she's getting an infusion and that sucks for anyone. I'm determined to let it go and meditate. Meditation grounded me and helped and calmed me down.
It’s been almost a month since the last infusion and I’m optimistically hopeful that it’s working. I feel really good, little arthritis pain, moments of pain free, and best of all my feet are healing. I only have 1 or 2 small spots I glue now. I can walk without pain and am back to morning walks. I am beyond grateful for medication and patience in waiting for results.
Resiliency Illumination 5 – Patience pays off
I’m not a very patient person, it’s something I’ve been working on my entire life. This has been a lesson is patience and trust. Patience that the medication will work, patience in healing, patience with medical providers, insurance and nurses. Patience with others like Glam-Ma. Patience - it can pay off.
I hope that this series about my auto immune journey has provided you with some insights into resiliency and illumination at how you can grow your own resiliency skills. even if you have health issues.
Please know that you can survive and thrive when life keeps happening and it seems no way out.
May you and yours be healthy and well. Never give up and advocate for your well-being and health.
I know you can survive and thrive even with life really seems like you can’t catch a break, rips the rug out, and you want to give up.
I would be honored to support to build your resiliency or other skills. Please reach out and contact me. I love supporting my clients to get up and bounce back and live boldly. I have space for a couple of clients as some have moved on and others have begun their journey.
Click here to reach out to me or set up a 30min discovery call.
Peace, and blessings,
Teresa – Grateful and Optimistic for healing and pain free moments
Teresa Q. Bitner, M.Ed., PMP, ACC - Resiliency, Change and Loss Coach
Partnering with those who have been knocked down my life and want to build resiliency and move forward and live a bold life.
Author of Soul Love: How A Dog Taught Me to Breathe Again &
The First Days Widow Journey