Surviving is a good thing

Yes, I have survived my surgery.  Given that a partial thyroidectomy is a pretty standard affair, this should come as no surprise.  However, it hasn’t felt so easy so I’m trying to make a point to feel proud of myself for getting through it all.  The surgery itself went well and I stayed in the hospital overnight for monitoring.  The biggest issue seemed to be the alarm gong off every time I nodded off to sleep.  It seems my meds were making my heart rate too low (we have since adjusted dosage).  Also, since I was a fall risk due to my POTS, going to the bathroom was a big ordeal and involved needing a family member present- I still don’t understand why it went like that.  So, hubby stayed first part of the night and my mom stayed the second half.  I must admit, I was so happy to have someone with me.  It was a great comfort.

I was on pain meds and stayed on them when I went home.  I had some lovely visits both at the hospital and at home.  It meant so much to me to feel the support.  In fact, I also had a support group online and my folks’ church sending me positive energy and healing prayers.  Both my mom and my dear husband have been taking care of me.  We were using the wheelchair indoors a lot, which is a mixed bag.  I finally got off the pain meds and started getting around on my own a bit more, but my mood sort of tanked when that happened.  I’ve been experiencing this horrible strangling sensation in my neck and have been very grouchy.

I’ve been working on my mood and on getting my body back in gear. I’ve been watching TV and floating around online.  I’m really thankful for my online support groups- they keep me from feeling alone and isolated.  I’m trying to do little exercises while I lie down like I learned from my Physical Therapist.  It seems that since the wedding, I’ve had some notable deconditioning.  Hopefully I can get some strength back into my muscles.  I was especially restless yesterday and I got a really nice treat.  My mom and sister took me to a park along with my nephew.  I got pushed in the wheelchair and got to feel the sun on my skin and fresh air in my lungs.  I was delighted to see my sister play with her son.  It was really special to be out in nature with family.  It exhausted me, but was well worth it.

With the surgery behind me, I’m feeling a bit lost about what I am doing in life.  My main goal is supposed to be to work on my health.  I’m having trouble navigating my care.  I’ve been denied an outside referral to a specialist and frequently feel like my doctors don’t know what to do with me.  It feels like I have enough to deal with without fighting insurance and working with doctors who are unfamiliar with the nuances of my conditions- a frequent complaint from the chronically ill, I know.  And I want to be doing more with my life than working on my health.  It was awesome to work on planning our wedding.  I was driven, motivated, and creative.  Still, in retrospect, I clearly ran myself into the ground and did not pace well.  I had big plans post-wedding.  I wanted to create an online store for crafts that I would make.  We were also talking about having children.  I don’t know what to do with those plans, as they seem quite out of reach at the moment.  I’ve talked to my husband about possibly working towards growing awareness about chronic illnesses as a new goal to work on.  Perhaps this blog is part of that.  I tend towards being a private person, so I question if I am ready to share my story towards that end, but I am testing the waters.  Part of me worries that if people in my life really knew how hard I struggle, that it would be difficult for them to be around me.  I don’t want sympathy, and I don’t know that I truly want people to understand.  I think that for someone to truly understand chronic illness, they must somehow experience the pain of it, the overwhelming sense of loss, and I don’t wish that on anyone.  I like to try to find the bright side and leave things on an up note, but I can’t always do that while also being authentic.

For now, I am taking one day at time while also looking at the near future.  I have an appointment next week to see about a power wheelchair.  I’m nervous that they’ll give me one and nervous that they won’t.  I’d like more freedom, but being a part-time wheelchair user is still something I haven’t wrapped my head around.  I danced at my wedding, so can’t I just use my willpower again and again to not need mobility aids?  So far, willpower only gets me so far and often ends up with a huge toll afterwards.  Part of being strong is knowing when to ask for help and to stay open to utilizing tools that make life more livable.  I know I have a lot of work to do in my own headspace as I adapt to the changes I’m going through.  I’m reminding myself to be patient, kind, and loving towards myself.  I’m focusing on how thankful I am for my loved ones and the support they give me.  I’m pushing myself forward, but doing so gently, and I am staying mindful of finding a good pace.

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4 thoughts on “Surviving is a good thing

  1. Although a thyroidectomy is considered a standard procedure- I think the recovery is not as easy as people say. My mom had it done and she too feels a lump in her throat after and is having trouble having the doctors address this issue. So if you are having difficulty with the recovery don’t think you are weak because you aren’t. Trust your gut and be persistent in getting yourself the right care!

    Also- I have learned so much from your blog already! I was compelled to learn what POTS was because I have not heard of that condition before! So you are already spreading awareness! 🙂

    As someone else who has a chronic illness- I encourage you to take life one day at a time and still follow your crafting dreams! If it’s your passion- go for it! It will improve your quality of life and provide motivation! Understanding that bad days happen and those should be rest days- but on good days you should craft! 🙂

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    1. Thank you for your comment; your kind and supportive words mean a lot to me. This surgery recovery is not what I expected, so what you said is very validating and appreciated. And I am so encouraged that you have learned from my blog and feel that I am already spreading awareness! I do hope I can get back to crafting and hope I have more up days when I can do this. I think I’ve just had so many bad days lately that I’ve been bracing for it to continue- I’m due for an up swing! It’s really special to be encouraged by another person with chronic illness. Thanks for taking the time to comment. ❤

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      1. No problem! My mom has had a difficult recovery as well- I guess we assumed that it would fix the problems she was having pre-surgery and I think it just created a set of new ones. I wanted to let you know that you are not alone! And that you are entitled to feel whatever way you do- despite how people think you should feel. But also encourage you to follow your passions and not let the bad days consume you. They happen, but good days are coming. Like you said- you are due for some! 🙂

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  2. I suffer with chronic pain day in day out its depressing and your right no one really understands it, however in nearly 3 years I have come along way, the pain is still there but my attitude has changed. Family support is the most important part of recovery and continued adaptation to life. In fact I am wrong the love and support of my wife is the most important part with out that I would feel truly lost, the trick to remember is they are going through the same thing as you are only on the different side of the coin. My advice is pay some attention towards your dreams and your plans you must never forget that what ever happens your future is what you are working towards and you may find the distraction and the mental exercise is as important.
    Your mind is no different to your body and it to needs some concentrated efforts. I wish you all the luck in the world so keep blogging if nothing else writing down how you feel good or bad is the best release you will ever have. And trust me if it helps just one person then the sense of achievement is priceless…

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