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Chronically Pep
United States
Приєднався 20 жов 2015
Hello everyone!
I started this UA-cam page originally to share my journey with spinal surgery recovery ( ACDF surgery ). However, following my surgery, new health issues arose and my many symptoms progressed. Eventually, I was diagnosed with Lyme disease, migraines and full body small fiber neuropathy. I am here sharing my joys, struggles and adventures. My hope is to raise awareness of chronic illness/pain and connect with others facing health issues, and help those who may be facing surgery or dealing with a chronic illness diagnosis. Please subscribe to my channel so you don’t miss a video!
Instagram is Chronically_Pep
I started this UA-cam page originally to share my journey with spinal surgery recovery ( ACDF surgery ). However, following my surgery, new health issues arose and my many symptoms progressed. Eventually, I was diagnosed with Lyme disease, migraines and full body small fiber neuropathy. I am here sharing my joys, struggles and adventures. My hope is to raise awareness of chronic illness/pain and connect with others facing health issues, and help those who may be facing surgery or dealing with a chronic illness diagnosis. Please subscribe to my channel so you don’t miss a video!
Instagram is Chronically_Pep
Відео
Divorce (Will I lose insurance/treatment now?!?)
Переглядів 2762 роки тому
Divorce (Will I lose insurance/treatment now?!?)
Decorating for Christmas 🎄
Переглядів 622 роки тому
Decorating for Christmas. I love this time of year. Over the years I have learned that the real joy of Christmas comes not in the decorating and the shopping or the scurrying to get the best deal on the latest gift. I find the real joy of Christmas when I focus on the reason we celebrate. I am blessed. Even when I walk through difficult times, I am blessed. I can’t imagine navigating through th...
My Grandson Said S#*! 😂
Переглядів 683 роки тому
My daughter was stopping by for a visit. She tripped on the porch ledge and said,”Sh@!. The grandman copied lol……… #blooper #kidssaythedarndestthings #AFV
Texas Snow Storm 2021| Fun Snippets #shorts
Переглядів 383 роки тому
Texas Snow Storm 2021| Fun Snippets #shorts
Bud Light Ugly Sweater Seltzer Taste Test
Переглядів 843 роки тому
Taste testing a few Bud Light Seltzer drinks while we wait for the snow to come! ⛄️ ❄️
Worsening Symptoms Part 2 ( Now testing for SFN )
Переглядів 3884 роки тому
Worsening Symptoms Part 2 ( Now testing for SFN )
ACDF Surgery 5 Weeks Post-Op ( Video and pics )
Переглядів 3,5 тис.8 років тому
ACDF Surgery 5 Weeks Post-Op ( Video and pics )
ACDF Surgery 4 Weeks Post-Op ( video and pics )
Переглядів 29 тис.8 років тому
ACDF Surgery 4 Weeks Post-Op ( video and pics )
Horrible Insomnia After ACDF Surgery
Переглядів 4,6 тис.8 років тому
Horrible Insomnia After ACDF Surgery
ACDF Surgery 4 Days Post-Op ( video and pics )
Переглядів 11 тис.8 років тому
ACDF Surgery 4 Days Post-Op ( video and pics )
ACDF Surgery 3 Weeks Post-Op #acdfsurgery #spinalsurgery #herniateddiscs
Переглядів 81 тис.8 років тому
ACDF Surgery 3 Weeks Post-Op #acdfsurgery #spinalsurgery #herniateddiscs
Are you in Canada?
Thank you for sharing ..I think I'll tap out now because I'm terrified of doctors and needles
Omg 😳 sorry you went through that
Thanks!! I mean it wasn’t fun but at least we had a good laugh afterwards. 😂
Hey how are you doing now and recently? I had a spinal tap done in the ER, and it left me nearly quadriplegic. I’m actually now considered paraplegic to an extent because I’d suffered an injury during the spinal tap procedure. When the doctor stuck the needle in it hurt like hell in my back and my right side and leg jolted and then went limp. Now almost over a year and a half my right leg has droop foot, I can’t stand or walk, I have nerve pain and damage that is neuropathy, it feels like there’s no strength or muscle in it at all because the nerves controlling moving the legs from that spinal column were severed. It affects my back, my hips, and even my left leg having some paralysis in it. I wish I never got one done it’s completely ruined my life!!
Jedi this is heartbreaking!! I am at a loss for words. I hate that that happened to you!! Never mind how I have been!! How are you doing through all that?
@@chronicallypep5 I’m not going to lie.. it’s been absolute hell and just awful. It seems like this might be the end, if it’s not, I don’t even want to know.
@@harris1482 I’m at a loss for words. I can’t imagine how that would be. I sure hope you have good support around you!! I know what you are going through is difficult, for sure. But prayerfully with time, you will find more peace as you walk this out. It’s not the end for sure. Praying peace and strength over you new friend.
Insane
I have a history very similar to yours. I have had an equivocal Lyme Disease test too in the past. If you have not yet, look into Armin Labs the eliSpot test in Germany and Igenex test. Also you may want to contact Columbia University about the Lyme Disease program there. Also, if you have not yet, please get a test for anti-FGFR3 antibodies and TS-HDS antibodies. IVIG is going to be denied most likely - but it will work. Let's try to put a lawsuit together against insurance possibly....same boat....
Twitching all a normal part of the joys of SFN. So glad pain isn’t a huge deal for you; definitely keep that journal because mine has progressed over the years & it’s much easier to see it through journaling. The memory issues cause such a problem I couldn’t remember anything without writing everything down. Making videos is easier as it hurts my hands terrible to write. Are you open to using Ambien for sleep? It saved my life. I started getting only 2-3 hours of broken sleep a night to pain & stiffness. Anyway. Thank you for sharing your journey with us. 😊
Thank you!! I just had a zoom appointment with my doctor and forgot to ask for sleep aide 😭 I’m going to message her and see if she can help. I have been worried about my air hunger though and worried if a sleep aide would worsen my breathing. I too forget sooo much. We joked about my forgetfulness for years but now I understand why. Even in looking back over these videos I have made over the years, I forget words. It all makes sense now. My symptoms have progressed over the years as well. Now that we have a diagnosis, I’m hoping to get medications working for me better. Btw, sorry for the late responses!! I just figured out I wasn’t getting comments because I needed to download another UA-cam app!! Lol I really enjoy watching your videos. I relate to sooo much of what you are going through.
I have this for 15 months now had all weird electrical sensation and pains since 2015 . Have you had a EMG?
I did have one. It showed some weakness.
So it sounds like you also have nerve damage on your l spine. Im confused why you had surgery on your c spine but not your l spine because you have leg pain... sounds like that might be next. Beware as you remove vertibre you loose mobility.
My brother has had multiple spine surgeries. I fear that!!
Did the fusion help get your life back? Im getting pain between my shoulder blades . I get pain in my shoulders
The fusion was a God send!! I would do it again in a heart beat!
Hey Leanne how are you these days with your cervical fusion?
I am doing good in regards to the fusion, However I now have been diagnosed with a chronic illness. Possible trauma?? We don't know.
I just had a skin biopsy done and it showed it in my foot but not my thigh, they didn’t do my arms and most of this started in my hands, and now I have twitching in my eye, tongue, lips, and chin. I also get stabbing pain in my tongue, do you have any of these symptoms?
I do have those symptoms. Although I have not had twitching or pain in my tongue. I get twitching and pain everywhere else though.
How have you been doing lately? Are you doing any treatment?
I am so sorry, I have been diagnosed with idiopathic small fiber neuropathy around the end of June of this year. I am now going to try getting a second opinion to see if there is anything my neurologist missed.
Sorry you have it too!! Keep me update! I hope you can get treatment and help with symptoms!!
I'll go watch your former videos. Interesting your take on lime. Mine were always negative. How do you get the second test? Maybe you're on to something. Took me SEVENTEEN years to get the SFN diagnosis. It's been hell.
Seventeen years for a diagnosis?? Oh my gosh, I’m so sorry!! My neurologist tested me again because the disease specialist wouldn’t treat me after my first positive test. So I was given the recommended two weeks of Doxy ( what CDC will allow ) and retested some time later to see how my results were. I was still positive. I was then tested about a year after that when I came down with an infection on my face but I tested negative that time. It’s been a crazy past five years. I’m so sorry you went so long without answers!!!
Wow how crazy, I am currently being tested for this but cant because of COVID right now, my neuroligist is not seeing patients in the office to do the skin biopsy. But so crazy I think mine was caused by dengue fever is when all my symptoms started almost one year ago today and me too gastro symptoms, now neurological.
I hope you don’t have it!! Have you been tested yet?
Tmj? Problem?
No. I don’t have those symptoms.
Things have changed I guess. My wife had acdf on two discs. She came home today with no brace. Doctor said it's not needed, said after group tests 1 year post op there was no difference between the group with and without braces
Sorry for the late response. Just figured out I needed an app to get all my comments, so I am missing tons of Comments for years. She didn’t have a brace!?!? LUCKY!!!
girlll I would sue that disease doctor. that's ridiculous.
Oh, I wish!! It’s CDC standards though. Nothing I could do. It’s ridiculous for sure!!!
I hate that for u I have same thing
Thank you. I’m sorry you have it as well.
Ok girl - join us on the Small Nerve Fiber Neuropathy page on FB!! You are so lucky honestly to have gotten diagnosed so quickly. It took me 8 years and I lost track of the # of doctors I saw trying to figure out what the hell is wrong with me. Finally diagnosed last year after a visit with a rheumatologist. And I still don't know what's causing it either, aka, idiopathic (I suspect Sjogrens). And I can't get IVIG either. They usually only give it to people with confirmed AI diseases because its so $$ and so hard to get. Anyway, please join the group on FB - I have learned everything I know about SFN from that group. Doctors don't know crap about it. Also look up videos from Dr Oaklander in Boston. She is the world expert. Here's part of her website that lists her videos. Hugs from Texas
Thanks for sharing, will be watching your videos with interests as I have the same issue. It’s good to have someone sharing their story.
Thank you!! I hope you are doing well.
I’ve had it over 5 years & no remission days. There are days that suck & then days that get much darker. I hope you get answers. Idiopathic doesn’t help in regards to getting insurance to cover anything. 😕
Uugh, girl. I’m so sorry. 5 years and no remission!?!? I have been watching your videos for months now, and I see you’re looking for another job right now. I’m working a full time job right now but I don’t know how much longer I can do this. 😢 I feel like my bad days are more and more often. I still have remission days, fortunately, but there seem to be fewer and fewer days of them. How are we going to do it!?!? And with no treatment of this disease how the heck do we slow it down and or get better!?!
My neuro tried for a year to get IVIG. I really believe it will help me but because I’m idiopathic it’s a big fat NO. 😡
Same. Uugh Have you tried low dose immune suppressant medications?
Keep fighting and thanks for sharing!! Prayers to you!!
Thank you!! ❤️ prayers for you as well. I watch your videos and enjoy seeing your updates. My heart hurts for all you are going through and when you cry, I have cried with you. You are beautiful inside and out. You’re a warrior!!! Praying for you and for a cure for ALS!!
Thank you for the video I hope you are still feeling better.
Yes, thank you
I'm 14 weeks post ACDF surgery...I can't do anything because pain comes back worse than before surgery....I still have pain and tingling but now in both arms instead of just my left before surgery. I never had headaches before but now almost every day. Surgeon says its muscle related and will go away in time. Would I have surgery again? Not sure yet....I'm told could take year or longer to heal...I still have to take pain meds and flexerill. Not happy now but will see how it goes!!!
The pain I felt prior to surgery was horrendous so I would do it again for sure!! However I have since been diagnosed with a chronic illness that is nerve related that they cant figure out as to why I have it. Possibly trauma form the herniated discs?? We don't know. I hope you are doing better!!
Mederma helps scars
I have got a of information from you thank you for doing that
I’m happy they have been helpful!! Best to you!!
I have to the same surgery coming up and I can't sleep
Did you have surgery yet? If so how are you doing with healing? Sorry for the late response. Just figured out I needed an app to get all my comments, so I am missing tons of Comments for years.
Thx for posting, videos,I came across your ACDF video . You'll be fine , you are young beautiful lady , use your hypersensitivity for meditation ascension to higher self, positive thinking generates positive perspectives. "There's no matter as such, this mind is the matrix of all mater" Max Plank. Try vegan diet, heals most medical conditions and fasting, less food leads to higher consciousnesses. Don't let a diagnostic charge you with negativity, humans survived millions of years without doctors . heal your soul and the body will follow. Sending you positive vibes. Pray God !
❤️ Very true. Thank you for the reminder!
If you don't mind me asking why did you need a spinal tap
Natasha Malone I have brain lesions so they were checking for MS.
@@chronicallypep5 what’ did ur results say? I got my spinal fluid out today... they’re thinking it’s MS
@@luanarciajamesmair9669 my spinal fluid was clean. So no diagnosis of MS. The lesions I have may be related to migraines. I was recently diagnosed with SFN though. I hope you are doing good!! Be sure and rest up. Don’t try and push yourself. I ended up with the spinal headache and it was awful. Best to you!!!
@@chronicallypep5 Awwwwwww thank you so much.. I’m glad you were not diagnosed with MS.. MS is a hard pill to swallow..my fluid was immaculately clean 🤷🏽♀️.. just here patiently wait for results next week.... I’m besides myself girl.. lots of 😭 tears...it’s only God holding me up rn... thank you much.. hopefully ur neurologist started you on something to control ur headaches.. all the best
@@luanarciajamesmair9669 Thank you!! We are working to control the pain. Doing pretty good overall. I hope you get good results. I agree with you on leaning on God; it’s what got/gets me through as well. He is good ❤️ I am now having another issue that I’m trying not to drown in fear over ( I will make a video about it soon ) I keep running to Him for comfort and holding on to faith. Faith over fear!! 🙏🏽💪🏽 Keep me updated. Praying good results for you!!
Mederma for that scar even if its old ... everyday day! Thks for your video
You bet !Thank you!!
I have been told I almost have no choice but to do this soon and I have been very scared and sad. Thank you for your video, it has lifted my spirits. How are you doing now? have the fingers gone back to normal?
Sorry for the late response. Just figured out I needed an app to get all my comments, so I am missing tons of Comments for years. I have had other health complications and have a list of videos following this explaining. It’s been crazy. Not sure if it was health issues that caused this or this that caused what I am going through now. 🤷🏽♀️ My fingered girl better but not back to normal.
Hi how are you now? Have you pain neck now? And the swallow is good? Thank so much
Hi I am 2 weeks post op my neck gets stuck when I try to move it. And the throat will heal on it’s own. And yes the cut looks lumpy on many people mine is like that. It’s hard to do anything with the neck brace so I use a soft one. I just hope I can take it off soon. Thanks 🙏 for your video.
Hope you are doing well!! How did your neck heal?
my swallowing was so bad that they ended up giving me steroids for a week and had to stay in the hospital cuz I was having trouble breathing
Oh no!! How are you been doing now?
Just noticed that this video is fairly old hope you're doing well just curious as to how you're doing today
Sorry for the late response. Just figured out I needed an app to get all my comments, so I am missing tons of Comments for years. I have been doing good in regards to the surgery. But it triggered other health issues or the other health issues triggered the spine issues?? 🤷🏽♀️ Long list of videos have followed and will continue as I document what’s going on.
I'm curious I just had the exact same surgery 3 weeks ago and my doctor said I did not need a neck brace why do some patients need neck braces and some don't not sure if you have that answer very curious though
Good question. I have no idea!! Haha 😆 Sorry for the late response. Just figured out I needed an app to get all my comments, so I am missing tons of Comments for years.
I thought they cut on the left side not the right side?
Nope. The right side.
Keep your head up, I'm in the same boat! Its scary and stressful! It is a chore!
How have you been doing?
How are you doing
I mean I am now diagnosed with a chronic illness so I could be better but doing good still. lol We arent sure if the nerve injury caused my diagnosis or not.
Hey did you get the , blood patch ? Did you get any nauseas ? Or dizziness ?
Abcd Efgh I did get the blood patch. My headache got so bad I was nauseous, dizzy and in a lot of pain. :(
How are you doing now? I have had all the same symptoms too and it's frustrating trying to figure out everything. I just had my MRI on my brain so waiting for results.
Mother Clover I’m so sorry for such a late response. Sometimes I miss comments. How are you doing now? I just watched some of your videos. Sorry you are dealing with similar stuff. I am actually doing worse. I have more symptoms and they have been compiling. I will need to do an update. It’s a long story. I will do an update tonight. Best to you!!!
@@chronicallypep5 not to worry. I understand! I'm sorry you're not doing very well. :(
@@chronicallypep5 they found a lesion on my pineal gland that they think is a pineocytoma.
I had my lumbar puncture this morning and for me it was a good experience. The only "pain" is when they numb the area (cant really call it pain cuz even a regular blood test is more painful!) Then I didn't feel anything during the actual procedure and the resident was able to get to the right spot in one attempt. Now im having a very mild headache and a little bit of nausea and that's it , didn't have to use tylenol or advil. Hope you'll all have a good experience dont worry :)
Meriem M That’s great your experience was good!! Mine was NOT at all. It was horrible. I also got the dreaded spinal headache the second day after mine and had to go to the hospital for the blood patch. Worst headache ever!! And an expensive trip back to the ER. :( Some experiences better then others for sure.
@@chronicallypep5So sorry for that :( hope that its all good now !
I would look into autoimmune diseases that attack the brain if turns out not M.S. I am looking into them as well. Our symptoms are very similar. And I also have lyme, frontal lobe brain lesions, Hashimoto's and other autoimmune diseases. Please keep us posted
Angie D Well first I want to say I’m sorry you too are dealing with similar health issues. I hope you are getting good treatment!! I have sooo many updates. I need to do an update for sure. I know they checked me for several autoimmune disease but I’m not sure which ones 🤷🏽♀️ I’m back with the neurologist now and she wants me to do another MRI. I have to call the imaging center and schedule it. Hopefully even more answers soon 🤞🏼
Your a strong incredible woman God bless you and family
Jeffrey Laughman That was super kind!! Thank you so much for that!! 😊 Blessing to you and yours as well!!
Can you up date how do you do now
I have several in my playlist titled health journey bt if you are referring to my ACDF surgery then sure!! :)
Wow... still speeches. You are a true hero. How you doing?
Norah A B13 hello Norah! You’re too kind. I am doing the same. No worse and no better. I need to have another MRI done now to recheck lesions and neck surgery but even with insurance it is super expensive so I am waiting until after the holidays. Hopefully I get it done over Spring break and we go from there.
as far as I know I dont have Lyme
Today I was told I have 4 marks on my brain that are old
Any updates? Hope you are doing well.