Diagnosis

Let’s start off with something happy. My garden is flourishing:

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Today's scenes from my garden. Lovely flowers blooming. #gardening #flowers

A post shared by Andie Wells (They/Them) (@sewprettyinpink) on Jun 22, 2016 at 5:37pm PDT

I got more flowers and the back planter is fixed, but not yet rid of the rogue tree in the planter. Once the tree is gone, I can dig out the roots and finally refill the planter. I think some more hostas and a shade-loving flowering bush or two would be awesome.

On to the not-so-happy…

I’ve been pretty transparent about my health issues on this blog and I wanted to update since I finally got diagnosed. I have ehlers-danlos syndrome hypermobility type. It’s a connective tissue disorder that presents with hypermobile joints, chronic pain, thin skin, (cigarette paper) widened thin skinned scars, frequent bruising, and poor wound healing. My connective tissue which keeps my joints in place sucks and doesn’t help keep my joints in place at all. This explains my frequent subluxations/dislocations (subluxation is where the joint goes back in on its own and dislocation is where you need to push it or pop it back into joint) and chronic pain, but no signs of arthritis or joint swelling. EDS is often misdiagnosed as fibromyalgia, but can also come with a diagnosis of fibromyalgia. My pain is from hyperextension of my joints and damage to the soft tissues, but ultimately doesn’t affect the bones except as a result of injuries from dislocations. The injuries can lead to arthritis, but EDS itself doesn’t cause it. I’m glad to finally have a diagnosis and have a plan for treatment. I may also have other associated disorders, but those diagnoses will come later.

I have to work with a Physical Therapist to build up my muscles to give more support to my limbs. Some of my joints need braces and splints in the meantime to at least give me more confidence while walking. I walk slowly because I’ve had my knees give out so often. I used to be a fast walker. While I currently walk 6-10km per weekday, it’s not really doing much when I can’t build up the cardio aspect by walking faster. It will be a tough road and I will have more injuries along it. I know the injuries are just part of EDS and I can work on more preventative measures, but there will be injuries.

At least now I know the words and doctors can stop telling me it’s in my head and that I just need to lose weight and all my issues will disappear! Oh, the magic of weight loss… GPs love telling people weight is the issue and not a symptom of bigger problems. It’s tough to loss weight when exercise literally dislocates your joints… 5ish years ago I was 60lbs lighter than now. I was walking 10-15km per day and doing an hour of cardio and yoga per day. I was supposed to be in the best shape ever and on the road to even better shape with a lighter weight, but it was really the start of all these problems. My hip started dislocating and then various other issues arose along with another major knee injury (I’ve injured one or both of my knees several times throughout my life). My quality of life since has gone down significantly and I’ve gained back 60lbs. Luckily, my diet is pretty balanced so I’ve stopped gaining weight and have found that the summer has helped increase my activity for me to lose a couple of pounds. I’m sure that the increased weight has contributed to my increased pain and joint dislocations, but I haven’t had proper medical care until this past year to support me in any weight loss. Now I have a different GP and a diagnosis, I know what I can do to help myself. Weight loss won’t be my focus at all, but it might be a result of all the work I need to do. Weight loss is the furthest thing in my brain right now. I’m not going to beat myself up for not losing anything like I would have years ago, but I will be upset if I don’t build muscle mass and start feeling better. I shouldn’t be pushing myself with high-impact workouts or cardio. I need physical therapy, aquafit, and some weight training with a PT that understands EDS. I need to stop the decline now before it gets worse.

You’ll see swimsuit sewing popping up in the next while. I’m joining a YMCA with a warmish pool very close to my house and am going to need a bunch of suits. Swimming really is the best exercise for me and luckily I am part mermaid. When I was younger, I spent hours in the water if my parents let me. I will have to start out small and work up to a daily regiment. I have to be very careful to not injure myself (which can even happen in the water because that’s how bendy my joints are…) and work closely with a PT on every exercise.

Part of me is really relieved about the diagnosis, because it’s a name finally and actually matches up with all of my symptoms including GI issues. Many specialists told me that I would likely be diagnosed with it so I was prepared for it in one way, but the other part of me is scared and worried about the risk of injury as the reality of EDS sets in. It doesn’t ever go away. I know braces/splints and building muscles will help build confidence for the movement my body needs, but it’s a scary diagnosis and often the extent of the injuries and chronic pain leave people disabled. I already feel like a lot of things are cut off to me and I’ve spent the past two years really cutting back on my social life, because I just can’t do what I used to be able to do. I can barely hold groceries or pick up a laundry basket without feeling a joint dislocate/sublux. Even putting on a bra can sometimes lead to a subluxation of a rib or my shoulder or even my thumb. My chronic pain keeps me up at night, makes me exhausted early, and even makes sitting out the couch difficult since my right hip is prone to subluxation in any position. Even sewing can be difficult. The positive thing is that it won’t get worse as I age. It gets worse with injury and complications associated with that. Working on injury prevention and muscle tissue will help more than anything else.

I still have a lot more to learn, but at least I have something to research instead of a bunch of symptoms. I’m grateful that I finally found a team of medical professionals that can help me. Mostly I am grateful for my husband. He takes care of me and is my biggest patient advocate. He carries the groceries and takes the laundry baskets down two flights to our laundry room. He makes sure I rest when I need it and reminds me to stop. As we approach our first year anniversary of marriage, I’m more grateful than ever that he is in my life. He’s truly a wonderful man. I’m also pretty transparent about my love for him. 😉

I’m trying to keep positive as I juggle the emotions associated with this diagnosis and plan out treatments with the professionals. It’s tough, though, and my sewing mojo has definitely decreased. I’m a bit depressed to be honest. I’ve struggled with it in the past and have felt it as my body declined. I find the plants help, which is why this post started with them. They give me something to focus on for care. I’m a nurturer so I feel better caring for others than focusing on myself. I miss my cat’s comfort for times like these. She would curl up with me in bed and purr like crazy when I felt sad or ill. My husband is a good cuddler and I don’t need to clean a litter box for him. Ha!

I’ve joined some support groups online lately and have found comfort in talking to other zebras:

❤

Everything in life takes hard work and I’ve never been one to let that stop me. I’m strong.

My tomorrow will be better than today and not worse than yesterday.

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