It’s been too long since I’ve written a post. I’ve been taking it easy. I’ve been winding down on doctor’s appointments, as I am planning to switch insurance and restart this exciting medical adventure with new doctors in 2017. I’d rather wait and get in with some doctors who know more about Dysautonomia and POTS and related conditions like EDS and MCAS. So, unless something dramatic happens before then, I’m going on cruise control.
I’ve definitely shifted my focus from treatments to coping skills. I completed my training with Dysautonomia Support Network and I’m now an official volunteer with an admin role in California. Volunteering gives me a sense of purpose, it makes me feel like I am contributing and helping others. Plus, I can do it from home on my schedule. I’m really happy for this opportunity!
I finally received my Aware with Flair clothing orders a while ago. Here I am pictured in my “Spoonie Strong” dress. I really like how they all turned out! It’s just tricky that some of my order got held up in customs. I like that the store service and manufacturer provide estimates on shipping and delivery, but they may not be accurate due to customs delay. So, I am still considering if I will take my store to the next level and start marketing a bit.
I attended a local support group that’s just starting out. It was great to connect with some other spoonies and many also had POTS. The online support groups and connecting in person really help me to bypass feelings of isolation that are so common with chronic illness. I feel like there are many people who care and understand what I’m going through. I hope I can provide them with feelings of acceptance and understanding, too.
One of my attempts at developing coping skills has been to request counseling through my insurance. I’ve had a couple of phone consults due to my mobility challenges, but I went in person recently with the assistance of my new wheelchair. I know it can be a challenge to find the right person, and I am trying to make this work. I like that she is someone I can talk to about things while she is not personally impacted by them. However, she has a fairly strong personality and weighs in and provides a stronger hand at guidance than I typically prefer. I wanted to talk to her about a very difficult topic at this appointment- having children. We did discuss it and it was such a relief to talk about it without seeing the weight of what it all means reflected in the other person’s eyes. You see, anyone in my life who would talk about this would be greatly impacted.
My husband and I had initially planned to move to Southern California to be near our families after getting married and start our own family. We ended up moving down before the wedding because my health was failing and we needed help from my family. We were able to move across the street from my parents and my mom has been helping out a lot. My health has declined to the point where the big question is about how much care I need. Wrapping my head around how to have and raise a child has become overwhelming. We’re also trying to find a wheelchair friendly home, but are taking our time with that, despite the fact that I often feel trapped in my home with its stairs and narrow hallways. I can’t imagine how we could pull off purchasing a wheelchair friendly home and hiring in help with child-rearing. I also can’t imagine what it would be like to attempt pregnancy with my current health or how much it would hurt to watch someone else raise my child because I couldn’t do it. I already understand how hard it is to interact with my beloved nephew- just a small amount of wondrous time with him leaves me completed depleted. I thought I’d be willing to do whatever it takes to have a child, and now I can’t even figure out a realistic plan.
I do think that talking about this at the counseling appointment is helping me to be more open about it. I’ve had trouble talking and writing about having kids because the topic can be very painful for me. I wish I had more time, but I am already headed into my late 30s and my husband is mid 40s. I need to reflect and allow myself the space to really look at our situation. I tend towards optimism and dreaming big, but I’m seeking a more grounded approach on this. My family and husband have been great at listening and offering solutions. I have a lot to think about.