Well, the day of surgery most people sleep the majority of the day. As you probably read in my Surgery part 2 post, I was awake most of the day 🙂 It’s helpful to have people in the morning and the evening when you’re getting dressed and bathing. Here are some subject-specific ideas that will hopefully give you an idea of what to expect!
At the hospital, surgery happens every day, multiple times a day. For the patient, it happens once in a blue moon (for most people). Bottom line: Surgery is a big deal!
I make this point because it’s important for patients to not be afraid to speak up! If you are cold, ask for a blanket… or five blankets! If something doesn’t feel right, or you need an explanation, speak up and ask. The nurses, techs, and surgeons do this every day and it can be easy for them to forget how foreign and frightening the whole experience often feels for patients. It’s important to feel comfortable and in control.
The hospital will have you arrive at least an hour before surgery. Soon thereafter they will have you change into a gown, take your vitals, and begin an IV. Before you know it, you’re fading out. Although I was apparently awake and talking to my surgeon and anesthesiologist, I completely forgot all of it when I woke up.
Last October I had shoulder surgery. Throughout the process, I knew I wanted to share what I learned on the blog because I wished I had known more going into it. I searched for information online and didn’t find a whole lot, so I hope this post will help serve as an informational guide before you have your procedure. The “how-to” of shoulder surgery that the doctors don’t give.
*Before I begin, I need to note that my surgery was a very different procedure than most shoulder surgeries. I had surgery to tighten the joint, because I was having consistent subluxations (partial dislocations) and the joint was completely unstable. After suffering for nearly six years with many restless nights, I finally decided there were no other options. The goal of this surgery was to actually limit my range of motion, and tighten the whole joint. Therefore my recovery time was much slower than a rotator cuff tear, for example. For most shoulder surgeries, the surgeon and therapists want you to be moving it within a week or two. My arm stayed in the sling for over a month. Keep this in mind when reading dates and timeline, as yours may very well be faster.
One of my biggest concerns in preparing for surgery was, how am I going to dress myself every day on my own? My mom and boyfriend are at work early, so am I just going to stay in my PJs all day? Not the healthiest thing for your mental state. You don’t realize how important this ADL (activity of daily life) is until you first hand are unable to do it! I talked to my friend who is an OT and her recommendation was to cut up some large shirts I didn’t care about and also just buy some bigger, stretchier shirts that I would be able to get over everything.
This post should really be “suggestions of a few things to do” because the options here are nearly endless. If you have physical limitations, and live in Tucson or are visiting, there are all kinds of great activities for recreation. Those of us who are residents are lucky to live in a very accommodating city! *Note – it is always possible something has changed and although I try and keep this list updated, prices and accommodations change regularly, so always call first.
“Turn your wounds into wisdom.”
– Oprah Winfrey
This is an x-ray of my chest and arm. For the last 5 years I’ve been dealing with shoulder pain. It started in just one shoulder and I only felt it at night. Although I was in physical therapy, the pain worsened and eventually began hurting in several daily activities. Overtime my other shoulder began feeling the same pain. The pain got so bad last fall, that my PT and I decided I needed an MRI and there was a chance it would lead to surgery. They found some pretty severe damage to my shoulder and told me not to push myself, but to try and keep my muscles strong. It has been a long process ever since, with doctors trying various alternatives (cortisone, PT, steroids) and not wanting to do surgery because, “with ehlers-danlos it’s best to avoid surgery” and it’s not necessary “if you can get through your daily life without surgery.” Continue reading
“For a while she considered being ill, but she changed her mind.” – Tove Jansson
There is an expectation in the world of care-providers to never label someone by leading with their diagnosis. For example, you should never say “the autistic kid” but rather, “the child with autism.” We would never say my cancer friend or my Alzheimer’s grandparent. Out of respect for the person, we are taught to name the disability after, as to not make the illness own the patient. The term we use is person-first language.
So why then, if our medical providers (attempt to) treat us with respect, do we (as patients) so often label our own illnesses or disabilities ahead of ourselves? Why do we classify ourselves in terms of the diagnoses that so often bring us down?
“It is good to have an end to journey toward; but it is the journey that matters, in the end.”  – Ernest Hemingway
A difficult thing I deal with each day is trying to embrace every day and each moment. So often I am just reaching for that destination, racing toward the finish line, and not appreciating what I’m learning and experiencing all along the way.
But don’t we all? Working toward deadlines, sprinting until… what? What exactly are we running towards? The end of one piece of our life. Okay, great so that part is done, now we move on to the next. Is this really what we want; realizing one day that we’re 80 years old and never truly enjoyed all the pieces of our puzzle – the laughter and triumphs, but also the mistakes and lessons – taking each day in stride and reflecting on what we’ve done, who we are? This blog is helping me do just that. My motto for March? Be Here Now.Â
It’s here! The countdown to rare disease day comes to an end. However, since I started the 100 Positive Days very late, I will keep going on into March, April, and May! In any case, I thought I should stop and take a minute to share some education about the rare illnesses that I have, and hopefully bring some awareness.
Ehlers-Danlos (EDS) is a genetic connective tissue disorder, which can present itself in a variety of forms or types, including a vascular form which can be life-threatening. However, I have type III, also known as “hypermobile” form. They call us “zebras,” – since we are often medically complicated and hard to figure out – hence the zebra on my blog banner. Hypermobile EDS, also often identified as “Joint Hypermobility Syndrome”, affects 1 in 10,000 people. What it means for me, is I do not have enough collagen and my joints are very loose and stretchy. I’m really good at yoga and gymnastics but should never be allowed to do them because there’s a good chance my joints will dislocate or at least sublux (partially dislocate). I have severe joint pain and my shoulders often sublux, creating further trauma. EDS is the cause of many of my other issues, including two I will mention below, so diagnosis is important to help understand other symptoms. Often a rheumatologist or geneticist can help make the diagnosis, which is typically made from physical manipulations (beighton scale) and symptoms, rather than genetic testing.
One of my favorite quotes is, “Be kind, for everyone you meet is fighting a hard battle.” It’s all too true. Divorce, the loss of a child, terminal illness, loss of a family member, troubles at work. We’re all going through something.
But it’s the struggle, that makes us strong. For every struggle we overcome and rise above, we grow as a person, learning from it getting even stronger. I know this is easier said than done, which is why I love the quote above. If we treat each person with the upmost kindness and respect, then maybe, just maybe, we will help their struggle, become just a little easier to overcome.
Rich with Life 