Shenanigans

"Do or do not, there is no try." - Yoda

It has been a few weeks since I last posted to this blog. Life continues to move forward. It has been 10 months since I had Open Heart Surgery to graft my aorta and replace my aortic valve. You may recall that I spent 8 months prior to that surgery battling my Takayasu's Arteritis (TAK) while also trying to decrease my steroid dose down to an acceptable range for the surgery to be performed. Last year at this time I would nearly pass out when I moved - I wasn't able to be alone, unable to work, homebound, weak, using a wheelchair for outings, unable to drive and completely reliant on my hubby, son and close friends to run our household. Looking back provides perspective, but looking forward makes me frustrated and sad. I have overcome so many challenges since December 2023, but I have more obstacles (which I am affectionately calling "shenanigans" instead of "dizziness") to overcome.

My surgery in July 2023 was extensive and I spent 3 months in the hospital recovering and rehabilitating before I could come home. I was bed bound for 2 of those months, and after having been sedentary for many months prior to surgery it took an extensive amount of rehabilitation to regain simple skills (i.e., breathing, swallowing, speaking, standing, balancing, walking with a device, walking without any devices, and eventually driving). I had inpatient rehab, day rehab (3 hours a day, 5 days a week for 10 weeks), and outpatient rehab. I recently started cardiac rehab. I fought hard and was able to regain so much and am grateful. So, why am I frustrated?

My surgery also robbed me of a few things. One of my vocal cords is paralyzed and I had a temporary injection so that I can speak above a whisper. My right coronary artery that was bypassed in 2004 is now occluded/blocked. My subclavian artery is also occluded. I continue to struggle with positional dizziness (aka shenanigans). These "shenanigans" are hard to explain and are unpredictable. It can happen from rolling over or sitting up in bed. It can happen when I go from sitting to standing. It can happen if I turn around too quickly. It basically happens at all sorts of times, all inopportune, with no consistent pattern. Because I know the likelihood of me being dizzy is very high, I normally sit at the edge of my seat, move my legs in place, slowly stand up, and then stand in one place to make sure to get my bearings. The trouble is, it often occurs after I do all those things. For example, I get out of bed, walk down the hall, and then become dizzy. Or, I drive to the store, slowly get out of my car, walk across the parking lot and have nothing to grab onto as the dizziness overcomes me. This is a very different sensation than the dizziness I had prior to surgery; it is not light-headedness. These shenanigans cause me to lean toward the left, feel/act off balance, my face gets hot, my ears ring, I am unable to focus my eyes and I hear my heartbeat amplified in my head. It can last a few seconds or drag on for quite a while requiring me to sit down, take deep breaths and try to regroup.

Here are a few examples of how these shenanigans manifest in my life:

• I drove myself to get a pedicure. I carefully stood up (with my beautifully painted toes), started walking to the register and then had to lean against someone's station. This actually happened again this month, but this time as I was checking out at the desk. The manager walked me to my car to make sure I was okay.

• We recently attended a fundraiser trivia night. We were at table with 8 of our friends. I stood up at one point, felt the dizziness coming, put my leg under me in a half-kneel and proceeded to crumble into my friend on my left. This was one of the worst episodes in a while and was terribly embarrassing. Our friends were really calm about it, and my friend who caught me was so kind about the whole thing.

• The other day my doorbell rang. I saw that it was my neighbor, so I went downstairs to the front door. I had to prop myself up on the door frame, and eventually lean against the open door. I am not sure if I had a coherent conversation with them, or not, and felt really bad that I couldn't even invite them in.

I am trying - or as Yoda would say "doing"- to reclaim the things that I did previously and be more independent. Hubby is very patient and empathetic and takes me grocery shopping, to our local MLS/soccer games, out to eat, etc. I know it isn't fun for him to stand by while I am dizzy and there is nothing, he can do about it. I have taken a one-time fairy garden class at the community college, a one-time container garden class at the local park district, coordinated a couple of events at our church (where I try to stay standing to avoid dizziness), volunteered at our church's Justice Center, volunteered as the administrator for our church's benevolence fund and am currently taking a pottery wheel class at our park district over the next few weeks. But the reality is that I don't leave the house much without someone with me.  I have become very skilled at drive throughs, store pick up, online shopping, and delivery to be as independent as possible.

I am SCARED, FRUSTRATED, SAD, DISAPPOINTED and EMBARRASSED. I feel like people expect me to be "back to normal" while I am still struggling with so much. And it is embarrassing when I have to stop in the middle of walking somewhere/talking to someone/standing up from a chair. I don't want people to be scared to be around me and I want to be independent.

We have made lots of modifications to our home and our routine to make me as independent as possible. I wear a smart watch with fall detection and the ability to call 911. We have an adjustable bedframe that uses a motor to slowly incline the head of the bed towards a sitting position. I have slip on shoes so that I don't have to bend over/have my head down. We recently had a storm door with a built-in dog door installed - this has been life changing, especially during the spring, as the dogs can now go in and out freely. We have robotic vacuums and a cleaning lady. I have lots of household items on "subscription" and utilize Amazon and online shopping frequently. With all of this in place, hubby has gone back to working in the office two days a week.

Hubby is traveling for work this week and our son is studying overseas for his May-term, so I will be alone for a few days. We are taking a family vacation with my parents and my brother's family to Gulf Shores, AL next week. Then my husband and son are going fishing in Canada for a week, and I will be alone again. And I am planning a trip to Disneyland in July to celebrate our 25th anniversary. I haven't navigated an airport, flown or been away from home vacationing in quite a while. Also, I have not been home alone overnight for more than a year. So, I am DOING.

I have had appointments with my medical team, had medical tests and made some medication modifications. My cardiologist took me off one blood pressure medicine and will be decreasing my beta blocker in half. These changes are like walking a tight rope. Because of my damaged aorta, fragile arteries, and blocked coronary artery my blood pressure needs to be optimized or controlled - but my blood pressure may be dropping when I change positions contributing to the dizziness. I am also in the process of changing the type of steroid I am taking. I am steroid dependent (also called adrenal insufficiency) and must take a daily steroid to replace what my adrenal gland is not producing. Hopefully the steroid switch with help eliminate some steroid side effects, even if the change doesn't help reduce the dizziness. All these things take time and patience.

My patience is running thin. My quality of life is suffering. I will not give up this fight and refuse to believe that this is my "new normal". I am also tired of living this way. But I will keep DOING.

I am grateful for all the people in my life who have extended grace, compassion and patience as I continue to struggle both physically and emotionally. I know I am "a lot" and do not expect anyone to have to put up with these shenanigans (sometimes called dizziness).