anxiety, joy, MS medication, Multiple Sclerosis, Not Today MS, pandemic, panic attacks

Let’s catch up

It’s been a while. I’m sorry. I’ve been processing and planning a wedding (my son’s) and learning my new job at my old office which brings me so much joy and continuing to work on my mental health and recover from what I went through from 2019-2022.

I once heard a Christian leader say that they couldn’t speak on or lead from a place where they were still processing and I’ve felt that the last little bit. I don’t have the answers. The 3 years of toxic work environment, bullying, health scares, pandemic, family crisis, raising a teenager, raising a newly college graduated boy starting his career, uncontrollable weight gain and stupid MS Medication changes have left me with quite a few scars. But I finally feel like things are getting solid in my life again. My immediate family, my career, my friends and my mental health 3.5 weeks of the month (more on that in a bit)–so many things that have been rough for so long finally feel right. But sometimes there’s sour mixed in with the sweet, and that sour I’m still processing.

Let’s start with all good things in my life at the moment:

  • My son’s wedding is quickly approaching and I’m overjoyed for him and his bride.
  • My daughter is graduating high school and has been accepted to a wonderful college and has huge plans and we’re so thrilled for her.
  • My therapist (shout out, Amber!) is amazing. What she’s walked me through this past year… the tears she’s shed with me… the darkness she’s helped me process… She’s a gift from God. Our monthly therapy sessions right now are just a catch up and a chance for me to brag on how I handled a situation that would have sent me into a panic attack a year ago and for her to shout “GREAT JOB!!!”, but I know that she will continue to ask the hard questions and require the hard answers so that together we can do the hard work.
  • My husband. 19 years in and we’ve never been more in love. I tell him all the time I am so sorry he got such damaged goods (me), but he quickly tells me I’m dumb (his way of telling me to stop calling myself that) and that I’m the best thing that ever happened to him. He found me and pulled me out from the bottom of a closet in fall of 2021 while I was in the throws of the worst panic attack of my life and got me started on a path to mental health. I’ll never forget that.
  • I’ve been more active in the last month. I feel myself getting stronger and having more energy. I’m not weighing myself–I can’t stand to watch the scale not move or go up, so I’m just focusing on eating foods that gives me fuel and doing activities that bring me joy and make me feel alive.
  • I’m thinking about things like writing and podcasting again. Have you ever heard of Maslow’s Hierarchy of Needs? Abraham Maslow was a master psychologist and he had a theory of motivation that states that five categories of human needs dictate an individual’s behavior. In a nutshell, Maslow’s theory was that humans couldn’t progress to love, belonging, self-esteem, or self-actualization until their basic physiological, safety and security needs are met. For a long time, I felt unsafe. In fact, in therapy we’ve uncovered that’s the core of every trauma I’ve ever felt and every panic attack I’ve had as an adult. And when you constantly feel unsafe, it’s virtually impossible to create or do things that bring you joy or love or self-esteem. You’re just trying to survive. I was just surviving for a long time – now I’m ready to start thriving again. (see image below for an illustration of Maslow’s Hierarchy of Needs)
Maslow’s hierarchy of needs represented as a pyramid with the more basic needs at the bottom.
Source link here.

Now, the not so fun:

  • People. I can’t get into the majority. You get it. People are messy (including me) and I keep reminding myself I’m doing the best I can and maybe they are too. I can’t control anyone but me. I say this to myself nearly on the daily–I can’t control anyone but me. It’s not my job to make people do what I think they should be doing or saying and it’s okay if people don’t like me. I like me. God likes me. That’s all that matters at the end of the day.
  • Medication. This is what you came for… the MS stuff that I constantly try to put on the back burner on here because a) I’m not a doctor and I’m terrified of anyone following my lead on anything medically related and it causing them harm and b) I’m just doing the best I can in a situation I have almost zero control over. I’m on Kesimpta. I started the once monthly injection in December after Vumerity failed miserably and sent me into Lymphopemia. I’m trying to get used to it. The once a month is great. The shot–easy peasy. The nightly chills for 3-5 nights, no big deal. The irritability for a few days post shot–livable. My WBCs and Immunoglobins tanking because of the med… ugh… we’re hoping they recover by June. But… there’s a symptom I’m having that I can’t seem to find anyone else reporting on and I’m wondering if it’s just me and my brain and my hormones, etc. On day 3 post shot, depression creeps in. It’s dark, folks. It lasts a solid 48 hours, sometimes a bit longer. I’ve tried increasing water, planning more activities, planning more time for rest during those days, eating super healthy, going on daily walks–you name it. I have made my people aware of it so they can watch me. I keep waiting for that symptom to get better. The chills have and I’m managed to not get the upper respiratory infections that people seem to always battle on this med… but this depression… It’s a symptom I can’t live with over the long haul. Tecfidera gave me flushing every single day for five years and I would gladly take that side effect again in place of this emotional spiral. It’s hard to describe. It’s just a void of joy. And when you’ve been in a life-saving battle for joy and finally feel like you’re winning, the last thing you want is for anything to take that away from you again. At best, I feel numb. At worst, I feel like all hope is gone. My monthly shot for April has been delayed a week due to a minor cold I was battling. I’m set to take it on Wednesday (the 19th) and I’m praying so hard that I do not struggle with depression after this shot. I would love for you to pray for me. Brian and I have set a deadline. If by my appointment in June I don’t see a huge improvement in this side effect and if my WBCs and Immunoglobins haven’t recovered, we’re going to have some discussions with my doctor. I don’t know what the next step would be, but I like having a plan. And I like reminding myself that at the end of the day, I’m in charge of my health decisions. And if you too are struggling with a chronic condition, let me take a moment to remind you of that too–YOU are your own advocate. No medicine or therapy happens without your stamp of approval and comfort. Okay? It doesn’t mean we have to like it…. sometimes we have to endure crappy things for our own good. But sometimes the bad far outweighs the potential good. And it’s okay for you to speak up and say no.
  • And speaking of medication, yes, I’m still bitter over what happened in spring of 2021 when my insurance (and basically every other insurance company in the country) said they would no longer pay for Tecfidera. But, I remind myself every day that God is still sovereign over everything. And there’s a reason for medication battle I’ve been going through. It all serves some kind of purpose and it’s all for my good. I know that. I believe that. It’s just also hard and frustrating. Two things can be true at once. God can be good and the situation can be hard.

There is so much to be joyous about this month. As I type, the sun is beaming outside on this 80 degree day in Kentucky. I’ve filled all the bird feeders outside the house and I love watching my cat watch the birds out various windows. Life is good. Now, if I can just get this stupid medication side-effect to go away, things will be near perfect.

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