Dawn DeBois
Forum Replies Created
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“We need people in our lives who are willing to be stretcher-bearers — those willing to carry us off the battlefield of life when we lie wounded and unable to move. Who are these people in your life?”
That’s an interesting question, Ashley.
For me, my biggest test in who those people who came to help without judgement the summer and fall after my severe concussion when I was unable to communicate …or any time I tried to communicate came out completely wrong so I had to just stay to myself in my battlefield. My stretcher-bearers were two teammates who I swam with in high school who made sure I had food I didn’t need to prepare, had my meds because I couldn’t drive and had help with anything that needed to be done at home. I also had @pricewool who made sure I had good tunes to listen to in all the quiet. Also, I had a couple of very good friends who wouldn’t judge my relentless texts or voice recordings. It was impossible for be to talk normally. I couldn’t talk on the phone because hearing unexpected sounds back was literally painful to my brain. They all knew that I wasn’t acting like the Dawn they all knew and loved and thankfully they remained steadfast and are still there today. We are all grateful that those days are just a distant memory now.
Everyone is just an accident away from needing their stretcher-bearers. Having chronic illnesses makes us all even more aware of needing to know who our support systems are, and cherishing them. Sometimes our stretcher-bearers surprise us and are not who we think they will be.
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Yes, my swallowing problems became scary and even my voice was changing from the weakness in my throat that I finally relented and started IVIG. Prior to IVIG, I often would have food get stuck just after I swallowed it and it would very slowly then painfully move down my esophagus. When I started having a hard time swallowing water and my small DAP pills, it got scary. I’d have to concentrate hard to try to swallow water. It was crazy how my brain knew what I wanted to do but my swallowing reflex just wouldn’t happen. My neurologist sent me to a speech pathologist for the diagnosis of dysphagia and the speech pathologist noted that eating or drinking anything, my throat was doing a “double swallow” trying to get things to move. I didn’t even realize I was doing that. It was this last symptom that brought about my relenting and starting IVIG- I had held my doctor off for over a year due to my fear of side effects. Thankfully, since starting Ig, swallowing has been much better and my voice sounds like myself again, unless I’m tired. I do find my large Fish Oil supplements challenging but they at least don’t stop moving the way I experienced with food.
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This week Panther Rare Pharmacy has been notified by Jacobus Pharmaceuticals to stop all Ruzurgi shipments until further notice. It may be a day, a week, a month or more. If you are on Ruzurgi, you may want to take stock of how much Ruzurgi you currently have and discuss other options with your neurologist.
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Hi Ashley,
I was put on plaquenil or hydroxychoroquine for my psoriatic arthritis and it actually caused my LEMS symptoms to flare- my head became extremely heavy and I experienced numbness in my legs and face because of it. I hadn’t been diagnosed with LEMS yet so this medication was the key to my doctor figuring out why I had been experiencing leg weakness and periodic numbness for years. I actually wrote a column about my experience: A Cautionary Tale about Hydroxychloroquine’s Side Effects.
I’m glad you don’t have the same LEMS symptoms I had caused by the med; but I wonder if you are experiencing the LEMS fatigue so many of us go through. Your side effects may not be as bad as mine were because your IVIG is doing it’s job. I had to immediately stop taking it but am grateful to this day for having been prescribed it because it helped with my rare disease diagnosis!
As a side note, I can’t take anything for my psoriatic arthritis other than NSAIDS or steroid shots when things are too painful because most all of the medications are known to cause issues with demyelinating diseases. LEMS isn’t in that “group” of diseases but the nerves are still affected and thus there is that correlation of issues. IVIG is given when/if psoriatic arthritis starts to inflame the organs, so, being on Ig, I’ve got things covered the best I can.
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FINALLY I received the Moderna COVID vaccine. Yeah! I had the first dose yesterday and my arm isn’t even sore. I was a bit more nervous than I would be about potential side effects because some TBI patients in groups I belong to have reported an exasperation in TBI symptoms with the vaccine. So far, so good with no issues! I’ll keep you posted on my second dose.
‘As far as my weekly subq, I held off last week and will infuse at the normal time this week. I’ll also hold off so that I’m 2 weeks out from subq for my second dose. Having 2 small breaks like this to give my antibodies a chance to be active will hopefully allow the vaccine to work.
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IVIg is an amazing treatment. However, when we overdue more than normal our LEMS can still give us issues. Also, some cycles just don’t do quite as much as others. The 4 week cycle was hard for me because it would take me 4 or 5 days to get past the side effects and the last week was always a down week. My body reacted to the 21 day product half-life! Being on SubQ now I don’t have as many of those treatment highs and lows, thankfully.