I’d like to point out that asking for help is not one of my strong suits. I have always been pretty independent. Now I’m not talking about the big stuff like asking for help moving or editing a resume. I mean asking for help with the everyday mundane trivial things like getting out of the shower, help getting up, walking from point A to point B, or admitting that I can no longer hold down a full-time job. Battling Wilson’s Disease definitely has been a humbling, eye opening, and stretching experience. The most frustrating part is knowing that a little over a year ago you were doing fine working, running, sewing, driving, able to finish a sentence on a consistent basis without stuttering… it’s like knowing how delicious dark chocolate and peanut butter tastes and then being told you can’t have them any more (yes that was a WD joke 😉). There are so many trivial things that you take for granted every day like listening to music or tv a normal volume and then all of a sudden, any sound seems like too much. Or the pain you live with every day is slowly growing to such a fever pitch without you even noticing. As a result of this pain you become short with everyone around you and you aren’t really sure why. These aren’t complaints they are just facts of where I’ve been and where I’m at in my journey. I was asked to share my story with you and while I know many are freed by hearing another’s testimony it still feels like I’m standing in front of you baring some of my ugliest flaws.
So here it goes! I can pinpoint the day I knew something was terribly wrong with my body. Looking back there were little hints before my body fell apart, but nothing that you could put your finger on… like the arthritic pain in my knees since high school, my irregular cycles, emotional roller coasters, the intense headaches/migrains. Then there was the more intense stuff leading up to my collapse like falling asleep in the middle of a mat exercise only to wake up at the end of the workout. And even though I was eating well and working out regularly I just kept getting super sick; as in the flu 3 months in a row on 3 separate occasions. I went to my family doctor at the time and I went to my gynecologist and both said the same thing you must be depressed or stressed or having some sort of emotional break down it’s common for women in their 30s (que eye-roll). Then I had one good month then BAM! On March 22, 2017 I was down for the count. I found myself so dizzy I couldn’t walk forget about in a straight line; I spent a lot of time crawling. Then I realize “I’m not really dizzy like you get when you’re dehydrated or even have the flu. My head is literally moving without my control! All I kept thinking was how do I get off this ride (it’s crazy YouTube it)!?”
A week goes by and I am PRAYING like CRAZY at this point, hoping that very soon this will be over; it’s just a weird bug. Then in the middle of praying one day I remember that I knew a doctor that might actually listen to and believe me. I had met this doctor 3 months before through my employers, at the time, who by the way paid for our whole team to go to this doctor for detailed blood work on our heart health (Seriously best job ever!). So, I get into see my new doctor and he is like “Wow! This is not you at all! Let’s get some tests going.” For the next 6 months or so I was getting tests done and seeing specialists. Finally after my another failed attempt with a neurologist has done what tests they think need doing and come up with nothing, my D.O. remembers that he has had some Wilson’s Disease patients in the past and that my symptoms look similar. So we test for that sure enough that was it. We asked the latest neurologist if they would help treat my WD; she every so politely declined and the only person she would recommend would be a gastroenterologist… totally ignoring that my liver test came back fine and all my symptoms where neurological (yeah just a little frustrating). Best part though is my doctor pulled through! He already knew how to treat it so I didn’t have to find another doctor! I cannot convey to you in words the vast relief I felt to finally know what was wrong with my body and to be able to take some action. All I had to do was change my diet, take some pills, and come in for quarterly testing! Praise God!
I am now somewhere over 1 year into the chelation process and doing much better. I look back at that summer and smile. I have come such a long way. I have learned so much about myself and feel truly loved and cared for, by my family and some friends have stepped up and rallied around me. I know who I can count on and that it is ok to lean on others. God is still working on me to accept help graciously and admitting when I need a rest, but I know he’s there backing me up every step of the way. I think sometimes we focus too much on the I cannots in life and not enough on the little wins that you CAN achieve every day.
I try to do just one thing each day that I can count as a win; even small things like contacting a friend or spending time in prayer. I can do most basic things on my own now; like stand on the beach without help, cook small meals, and bathe all by myself on a regular basis. And on good days I can drive and sew. There are still some really rough days, but those are getting farther and fewer between. Through journaling and chatting with fellow warriors, I have learned and am still learning more about the little idiosyncrasies that make this disease so unpredictable and frustrating. But there are some patterns to be found if you know where to look; like check the barometric pressure in your area when you have bad days and if you see any consistencies. I have a migraine buddy app that helps with that. I try to fill it out every day I have issues and my sleeping pattern cause insomnia is no joke!
The learning curb is steep and I definitely don’t know all I’d like to know yet. And I can’t say I always handle it with grace, but maybe one day. 😉 What lessons I have learned have been hard one and I know this kind of recovery/experience isn’t the same for everyone’s story, but I am hopeful that through awareness we won’t feel so alone in our battle and help find a way to make this disease more livable. There is really neat research being done, like early detection in infants. What a blessing that would be?! To know from a young age and just take zinc every day! Well I hope this encourages you my fellow warriors…. ’til next time Live A Life Worth Fighting For!
Ajoy
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