Note: This article was originally written by Jamie Holloway and posted on JamieChasesButterflies.com on May 10,2022
I am writing! The day after receiving my first chemotherapy infusion of Rituximab in a year. I had to stop this medication in order to receive the COVID-19 vaccine so that I would not be negatively affected by it. It did not turn out so well for me. No matter what I chose. I could not win. Life sometimes happens that way. That is why choices have to be made. I am good with my choice, even at the moment it feels scary and overwhelming. I am overwhelmed. That is my biggest emotion at this present moment. I realize this as I navigated my day. Things that do not bother me, bothered me. But it’s okay to ask for help.
An idiotic package I got from a medical supply company that needs to learn how to pack a package. I made the choice to laugh about it, but my first reaction was not a good one. I do not like insulting someone but when your first words out of your mouth is to call that person a dumb f_ck that is not a good thing. Those were my exact words. I am being honest. I do not think the person who put a prepaid envelope box into my package for me to mail back a sensor to them is a dumb f_ck, but the fact, that the person sealed the box already before I even had the old sensor in it was a dumb move. I choice to laugh.
I know the 60 mgs of prednisone I am on daily to keep my Granulomatosis with Polyangiitis (GPA) (formerly known as Wegener’s Granulomatosis) from attacking my lungs even more is the culprit. I hate making excuses for my bad behavior. I am not angry anymore. I am overwhelmed. I have too much on my plate right now. Yesterday, the entire time I was getting my Rituximab infusion I watched my blood pressure skyrocket. I knew it was the steroids causing it. It caused my blood sugars to skyrocket it too. I feel like I can’t catch a break and it is exhausting and makes me feel like a giant failure with a dunce hat on.
When I got home yesterday I wrote my primary care doctor, the one in charge my my blood pressure medications, and shared with her what is going on and that I need help. I am overwhelmed and I need help. Thankfully they tracked my blood pressure during the infusions all day yesterday so she got to see them in the chart notes and that helped a lot. I told her that I would like to have an RN come out once a week or so to help me navigate my blood pressure while I am on Prednisone, which will be about 6 months to a year depending on how things are going with my lungs and my GPA. She understood and validated my overwhelming feeling without making me feel ashamed or guilty about it. I appreciate that all of my doctors do this for me. I need more of this in my life. I think everyone needs more of this in their lives.
I do not like feeling overwhelmed. I am glad that I do not feel this way often. I cannot imagine how those in my life who suffer from anxiety at higher levels than I do manage to breathe with this feeling. Gentle hugs. You are so brave.
In case, I am not making any sense with what I am trying to write to you all, I want to make it clear that it is okay to ask for help. There is no shame, no guilt, no pressure, no I am a warrior and I can do this myself attitude coming from me today. I understand. I am in need of extra help as I navigate these new circumstances in my health. In less than a week I will be getting my first lung balloon dilation surgery. Something I did not know existed for the lungs. I knew about the trachea, because I have been getting balloon dilation for my trachea since 2009. But my lungs, this is new, and the worse part for me is a new set of doctors I do not know yet.
I just met them last week. We barely shook each others hands. It was a quick appointment and here I am expected to trust this man and his team while they knock me out and place a balloon in my lungs and stretch it out so that I can breathe again. I have a complicated history with being put under. I have had several larynx spasms during surgery and I am not willing to be put in jeopardy so I am not going to play Russian Roulette with it. This week I decided to take a bit of control of this and I called my beloved Dr. Anderson (best ENT in the word, in my opinion) and asked for copies of the surgeries so I can hand this over to the team when I get to a new hospital and medical team. I want them to have all the information before knocking me out. No surprises. No excuses of not knowing. They will know. I am going to take an active role in my health. That is one thing I have learned from this journey of mine. Is not to be afraid to stand up and take action for myself. That I am worth fighting for and that I can fight for me better than anyone else can.
So even though, I am asking for help, I am still taking an active role in my wellness. Asking for help does not mean I am sitting by and doing nothing. No, I am asking for support, someone to stand with me and help me navigate the harshness of my reality. I have no idea where this concept came from that when someone asks for help it is seen as weak or makes them a liability to others. That does not make sense to me. It makes you stronger, because when we stand together we are stronger. Yes, healing is a lonely journey, but just because you are alone on the majority of the journey, because no one is going to experience your pain, your suffering, your ugliness, does not mean I am alone. It just means I am the only one who can navigate it and experience it and breathe through it. The others, who support me can be there and hold my hand, validate, and care. That is what support is. Support does not mean that the other takes on the suffering themselves, but they stand beside you while you are suffering through the darkness.
We all need support and to be validated. Validation goes a long way when you are suffering form chronic illness. At least, it is does for me. When I am validated by my medical team, family, and friends I feel like I can stand taller, fight longer, and do the impossible things. I am remembering this as I fight the mind monsters of trusting new doctors with my precious breathing. That is what I am overwhelmed about at the moment, along with the new body changes.
Here are some things that are changing in my body:
- I am shaking, especially on the right side of my body. Not all the time, but sporadically. This is new. It freaked me out the first time it happened. Freaked my caregiver out too. My hands and leg on my right side shook violently for a period of time. Thankfully, I am was in my electric wheelchair.
- Pressure in my face, especially the nasal passages. It does not feel that great.
- Pressure and pain between my boobs from my lungs. Because of the GPA and my air passages closing up it causes pressure and pain. Not fun.
- New noises from my lungs and trachea tube. Yep, never thought I would be hearing new noises that sound like a pressure valve going off, but I am. I am not amused.
- Blood sugars sky rocketing and then plummeting without warning. Not fun.
- Blood pressure going up and loopy. Not fun. I talked to my primary about this and we raised one of my medications I am currently taking so hopefully this will help me.
- Emotionally, I am overwhelmed.
I have asked for some help with some of the new things I must manage like extra infusions and tracking new things. I am proud of myself that I asked for help from my doctor and she is sending me the requested help. To anyone who is feeling overwhelmed by all the medical needs and responsibilities that are coming up that are making you feel loopy and afraid and ashamed and guilty and all those emotions. It is okay. It is okay to feel this way. It is okay to not be able to manage everything. It is okay to ask for help and support. It is okay. I would gently hug you and cry with you. Maybe throw out some cuss words with you to ease the pain and tension. Sometimes those cuss words release the pressure, so do not be afraid to use them when you need some stress relief. It is okay. No shame, no guilt, you are not a terrible person.
I am reminding myself to this daily. I understand the mental pressure of being disabled and chronically sick. It sucks! I hope that you know it is okay to ask for the help you need and that you are not weak because you need help. That is the biggest message I want to send out to the world. That there is no shame is receiving or asking for help. I am asking for help. I bravely talked to my care coordinator with my insurance company and told her I need help with ordering medical supplies because right now it is just too much for me to do. She graciously is helping me, no judgment, but with compassion.
Compassion and kindness are hard to see sometimes. It makes me sad. Because we need it so badly in our communities. Kindness feels like a balm to a wound of the soul and heart and when you are sick of spirit, body, and soul and mind that balm soothes everything to make it bearable.
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Jamie Holloway is a co-owner of Wellness Works NW and she is also our Research Manager and writes our Chasing Wellness with Jamie Holloway and Dear Jamie columns. Jamie is also an Independent Wellness Advocate at dōTERRA. She lives in the Portland, Oregon area. Since October 2011 she has been sharing her Journey Toward Health and Wellness with Vasculitis through her blog at JamieChasesButterflies.com. We hope you are as inspired as we are with the raw candor Jamie uses in her writing. If you would like to help support Jamie’s writing efforts please Donate now.
