Hi everyone, I haven’t been on here in awhile. I came back to bring very sad news. I kept in touch with @slekeille for some time after the surgery that we both had on the same day but I haven’t heard from her in quite some time. The other day I checked her TikTok profile and was shocked to find out that she passed away a few weeks before her second ES surgery that was scheduled at the beginning of August.
It was mentioned in the comment section and at first I didn’t believe it but there was a reference to her sister’s instagram page where there is a post dedicated to her memory. Like someone said in the comments she is finally pain free
Oh no, that is so sad, she was such a tough girl I was thinking that she’s not been on & had been due to have her second surgery…thank you so much for letting us know…have you been able to post a comment in memory of her? She was such an inspiration…
How are you Elena?
@Elena - Thank you for the update on slekeille. I have also been thinking about her recently & was going to send a message to see how her second surgery went. I’m very sad to hear that vEDS took her, but as you said, she is finally pain free, & as @Jules & @DeeCeeNorth noted, she was an inspiration on this forum. She will be missed.
I have also been thinking about you, @Elena. Have you made any forward progress in find the cause(s) of your remaining symptoms? I hope you have & have gotten resolution or at least reduction of your pain. Please let us know how you’re doing.
@Jules@DeeCeeNorth@Isaiah_40_31 I apologize, I’m not sure why I didn’t get any notifications about your responses. I thought maybe nobody wanted to comment on such a dark topic. Tonight I decided to randomly check the forum and found your replies.
I did not get to leave a comment in her memory on her TikTok account as I wasn’t sure if it would be invasion of her privacy or not and secondly I had no idea she even had a TikTok account as we always commented through text messages and I only accidentally stumbled upon her account when it popped up in suggestions. I have to say she did a great job spreading awareness about vEDs, ES and chronic illnesses in general and her account was quite popular.
I’m not very often on TikTok and went to check on her account after I haven’t heard from her in awhile, was shocked to find out the sad news, I was always amazed with her determination and willpower in the face of a lethal chronic illness - she worked full time and found time to spread awareness and educate others. I’m sure she’ll be missed greatly.
I can post a link to her account if that’s appropriate.
As far as myself I think I’m finally getting close to solving the puzzle. My bilateral ES surgery unfortunately hasn’t proven to be effective and my left side is stlll numb and sore from the jawline down the neck.
But I have found certain improvements after I started working with a functional medicine provider that is drastically different from traditional allopathic medicine. Just by changing my diet in a huge way I have achieved improvements in overall pain levels and hugely decreased medication intake.
While I’m far from being “normal” I finally have an answer. I had extensive blood work done through the FNP that showed mold in my body and my house, heavy metal toxicity, gut issues, high levels of inflammation. But most importantly a very expensive test through an independent laboratory came back positive for late stage Lyme disease and coinfections that explains all the bizarre and weird neurological symptoms I’ve been experiencing since the onset. Lyme disease is also infamous for mimicking multiple autoimmune conditions like ALS, MS, Lupus, Parkinson’s, Fibromyalgia, Chronic Fatigue Syndrome etc etc and many patients go their whole life misdiagnosed not knowing they have chronic Lyme.
I have learned a lot through extensive research and from joining an amazing facebook support group and will be seeing a Lyme literate provider out of state next month (since Nebraska doesn’t have any, surprise ).
I hope you all are doing well, I definitely missed our interaction and all the wonderful advice and support you have given me. I appreciate you all
@Elena - We would very much like the link to slekeille’s account. We lost another member last year - JustBreathe. I think it was therapeutic for people to be able to read her obituary.
I’m so sorry to hear you have late stage Lyme’s Disease & are suffering from mold toxicity but am really glad you’ve found doctors & more natural remedies that are gradually helping relieve symptoms. I hope that continues to progress. I hope as those symptoms heal, so will your remaining pain & numbness from your ES surgery. I hope in the end, the surgery did provide some benefit even if it wasn’t the ultimate cure for you.
Please drop by here anytime to update us with how you’re doing. I’d love to know you’re continuing to improve!
slekeille was definitely an amazing woman with all she achieved; I’m sure her family would be fine if you did leave a comment for her, I imagine it would be a comfort for them to know how many people across the world were touched by her story & to know she was an inspiration…
I’m sad that the ES surgery wasn’t really helpful, but glad that you are getting some answers now. @Dobbs has posted being in the same position as you with surgery not helping and has explored all sorts of other possibilities, you might find the discussion interesting, here’s a link in case: Dr. Hackman Surgery 2/28/22 + Full Story - General / Eagle Syndrome Stories - Living with Eagle
As @Isaiah_40_31 says, please keep in touch with updates if you can, & will keep praying that you can improve your health, you’re still on my list
@Isaiah_40_31 I’m so very sorry to hear of the passing of another forum member JustBreathe, I went back to read some of her posts and she was such a kind soul full of optimism in spite of all her ailments. Makes wonder so often why life throws these things at such wonderful people. Thank you for sharing with me and I’m sure her presence and her story has helped a lot of people in so many ways. May she rest in peace
@Elena - Thank you for your thoughtful comment about JustBreathe. We miss her just like we’ll miss slekeille but they both had a very positive impact on our forum and that will keep them alive in our memories for years to come.
I will look forward to your updates & will also be praying for your health to be restored.
Thank you for your kindness @Isaiah_40_31 , I appreciate all the helpful advice and support I have received from you and other wonderful members of this community.
I’m also sharing @slekeille ‘s sister’s instagram account where there is a pinned post dedicated to Kelsi’s memory.
Thank you, Elena! It helps explain her obituary which I found. It references her lifeguard & firefighting careers but said nothing about her valiant battle w/ vEDS. It is refreshing to know that she’d had a somewhat normal life into her twenties, & it was only her few last years that were such a struggle.
Thank you for sharing these, she was certainly amazing with her careers and what she overcame with vEDS, and how she educated others. So brave and positive, we will miss her
I was thinking that she’s not been on & had been due to have her second surgery…thank you so much for letting us know…have you been able to post a comment in memory of her? She was such an inspiration…
to hear that vEDS took her, but as you said, she is finally pain free, & as 
explains all the bizarre and weird neurological symptoms I’ve been experiencing since the onset. Lyme disease is also infamous for mimicking multiple autoimmune conditions like ALS, MS, Lupus, Parkinson’s, Fibromyalgia, Chronic Fatigue Syndrome etc etc and many patients go their whole life misdiagnosed not knowing they have chronic Lyme.
).
