Stef Manning - Still Standing

Graphic Design, Animation/Video Editing, Live Event/Sports Production, Digital Marketing & Advertising, Travel, Making New Connections - my favorite things! Also some info on my interesting experiences around the globe, fighting for my life with type 1 diabetes and Lyme Disease, and my accident prone nature... :)

[stef-manning]

Click here to support Life saving IV treatment for Lyme Disease organized by Stefanie Manning

Since 2009, I have battled for my life with over 20+ hospital stays, half of those in ICU's, due to Lyme Disease and it's symptoms (currently diagnosed also with Lupus, Rheumatoid Arthritis, Fibromyalgia, Gastoparesis, POTS/heart condition and more all from Lyme Disease)Here is my diagnosis story...

I am ready to attack this head on.  I need help getting the $60K needed for IV antibiotics.  For those of you that can help, I implore you, and am indebted to you for your kindness and assistance.

Warmest Regards,

Stef Manning

[bartonellababe-blog]

Time Out.

Hey, so I’ve been away. And I could make excuses. The honest truth is that people with Lyme Disease are the victims of a lot of doubt, and I’ve gotten madder and madder about it. My gifs just weren’t giving me the same catharsis. Then something happened last week that set me off, and now, I’m in fighting shape again. SO: This is a lot of text, but please, if you or someone you know have Lyme, take a minute to read it. It’s got a hell of a tirade for doubters of your diagnosis. It’ll have you like

It’s important that you join the fight. After this post, regular gifs are set to return, with the occasional post for justice for Lyme. Content after the break. <3

Keep reading

[stef-manning]

Hi everyone!

I have admittedly had a very rough past few months. I was diagnosed with a multitude of autoimmune disorders and diseases (POTS, lupus, fibromyalgia, Hashimotos, EBV, gastroparesis...) I also suffer with Type 1 diabetes since I was 7, but all of these recent failing health scares...diseases? Or symptoms of Lyme disease? That is the ultimate question. What to treat.

I believe that antibiotics will help as it had almost ten years ago. See my first post here on Tumblr that goes into that tale of woes and survival. Herxheimer reactions are common, but I had no idea how bad or for how long.

The symptoms that leave me bed bound are:

- light sensitivity so painful that it creates unbearable pain in my brain/behind my eyes that induces nausea

- falling and fainting due to heart rate issues, palpitations and body fatigue

- world spinning dizziness, accompanied by pouring sweats and nausea that will not desist

- PAIN beyond comprehension. All you want to do is be knocked out so you don’t have to suffer...joints, head, spine, ribs, muscles...however you move, sit, lay...all intensifies. Pain level: solid 9...ninjas with knives and clubs...see chart above.

- debilitating anxiety and depression due to not being able to depend on myself and my abilities as I had...but hoping antibiotics will give that back to me 🙏

I don’t want to be a Debbie Downer, but it’s impossible to keep all of this bottled up. I don’t wish this suffering on anyone from tick borne diseases and autoimmune disorders. Thank you to those of you willing to journey through this difficult road with me.

[stef-manning]

Where my mind is...

I've held back. What I share, not all thrown out there. However, I feel the fire in me dwindling...I'm so exhausted from no answers and continued health degradation. I felt great 3 weeks ago, then all of a sudden dizziness, fainting and blacking out. I am on 20 medications, and one I started 2.5 weeks ago, Savella. Then the gasping for air, feeling like I'm falling...this is scaring the shit out of me. To be honest, I'd feel more secure with a walker at this point. Seeing the cardiologist Monday and hoping the meds are the only problem and there isn't any underlying low blood pressure or cardiac issues. I appreciate the prayers and well wishes that have been sent my way more than you can know. The love turns my dismal mind around and helps me fuel the fight to get better so I can make memories with you all. God bless...

[stef-manning]

[chronically--courageous-deactiv]

Having your body betray you on a daily basis, causing so much pain that you can barely move, is soul shattering. It’s like being in prison, without committing a crime. You’re innocent, but you are being punished anyway. And sometimes, you can’t help but wonder how life can be so unfair.

Www.whitneyhomer.blogspot.com

(via

chronically—courageous

)

[stef-manning]

Yayyyyy...new Bartonella rashes, and some I've never seen before from Lyme or Babesia on my elbows, spreading to arms, head, face and back. I've had a rough couple of weeks with stress and Lyme symptoms. Smells make me nauseous and give me vertigo, so subways, walking crowded streets...not so good...trying to be a mouth breather for a while lol...bad side pain, dizziness, motion sickness, sweats, chills, insomnia, seizures, skin sensitivity, brain fog comes in mid-sentence... My glands are swollen, GARGANTUAN and tender. The muscle weakness is not full paralysis, but damn close when I have to drop to the ground to regroup at subway stations (yeah, gross, I know...) and also run out of a train car to vomit onto the tracks in a station vs on the train...STILL made it to work on time. BOO YA. :) This is all not to moan and complain, but rather share the ongoing battle and gritting my teeth and dealing with it...PUSH THROUGH. With chronic Lyme, due to receiving late treatment (based on CDC and IDSA guidelines that are for profit vs welfare of the people...but that's for another blog) flare ups and symptoms come and go as they please, and severity is always a gamble, especially with bone pain, neuropathy/stabbing pain and lethargicness. PLEASE protect yourselves from ticks...DEET IT UP...inform others of the dangers...and if you watch Under Our Skin for free on Hulu, you will understand the horrors, desperation and constant battles we as a community of Lyme Disease and coinfections sufferers face all too well...and you'll be thankful you know what to do to protect you and your family. I would not wish this disease on my worst enemies. THANK YOU FOR READING AND SUPPORTING ME IN THE FIGHT AGAINST THE CDC...share...please. ((HUGS)) -Stef

[stef-manning]

Awesome Lyme Blog I hope to share links from :)

[stef-manning]

I love to live, hate feeling helpless, so negativity stems from just laying there :/ Now I understand why people stop treatment too. It’s a horrible reliving of your nightmares with the first endless and tortuous battle with Lyme, where the end of the road seems so damn far away. Either live with chronic pain and symptoms you have when not on treatment, or treat for who knows how long, or how horrible the herx symptoms may be day to day, all to not be sure if the disease is truly gone, or just in remission. This is my battle now. Wait to continue treatment and feel better for now, or keep trucking.

[stef-manning]

This is the non pretty days of Lyme herxing lol.

Yesterday my symptoms were: 1. Extreme nausea 2. Vision loss, just see blurry colored shapes, no definition 3. Light sensitivity that creates the most excruciating migraines 4. Jaw lock 5. Lethargy 6. Muscle weakness, can’t stand 7. Brain fog, zombie state, can’t communicate well and am immobile 8. Joint pain and stabbing pain 9. VERTIGO…can’t stand without the world spinning and I fall

That’s it for now, but wanted to share the bad days photos so you can get a glimpse that healthy “normal” days are few.

[stef-manning]

I love to live, hate feeling helpless, so negativity stems from just laying there :/

Now I understand why people stop treatment too. It's a horrible reliving of your nightmares with the first endless and tortuous battle with Lyme, where the end of the road seems so damn far away. Either live with chronic pain and symptoms you have when not on treatment, or treat for who knows how long, or how horrible the herx symptoms may be day to day, all to not be sure if the disease is truly gone, or just in remission. This is my battle now. Wait to continue treatment and feel better for now, or keep trucking.

[stef-manning]

What day is this?!

Well, I've definitely been better, but I've also definitely been way worse, so trying to keep looking for the silver lining! End of the road! The herxing this week has been debilitating. Vertigo so bad that I can't stand up, or when I do, I fall after about 20 seconds. Can't even stand to shower. The rare days I can shower, I try to do my makeup and feel a bit better about myself :P lol...other than that, fevers, sweats, seizures, chills, muscle weakness, brain fog, and extreme lethargy are the most notable symptoms debilitating me. I have good days and bad days - so amazing how quickly the bacteria attacks and then tapers off, so I look and feel good one moment, then pale and weak the next. Crossing my fingers to have more and more good days!

[stef-manning]

Herxing...sucks...

:P  Oy vay...

I already had to take off two days of antibiotics after just 2 weeks of treatment.  It felt like I was reliving a nightmare, except not as much pain, which is a plus, lol

My herx reactions since abx have been:  vision loss, light sensitivity, vertigo, dizziness/falling down, brain fog, seizuring/spasms...very scary when I woke up the other day on the floor with my boyfriend above me asking if I was alright, and I had no idea how I got there.

I'm going to help more as the SD contact/rep for Worldwide Lyme Day, helping gather information on advertising for the month of May...I'm more determined than ever after being a vegetable for 3 days again, not having the energy to even stand up to get to the living room from the bed, to inform the world and get the justice and awareness that Lyme patients and caregivers so badly need.

[stef-manning]

Low Dose Naltrexone: a Beneficial Modulator of Immune Function

I'm amazed at the energy spike in just a short time on LDN with my treatment...I'm noticing far better symptoms (tolerable lol)   I'm hoping this is not a fluke, but will continue to monitor as I progress with LDN...so far, looking great

Low Dose Naltrexone (LDN) is used in many illnesses and syndromes, among them Lyme disease, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, autism, rheumatoid arthritis, HIV and cancer.  Since it works to balance the immune system, any condition that involves immune dysregulation may benefit from LDN. What is LDN? LDN is an immune modulator, which means it helps to balance and strengthen the immune system without over-stimulating it.  For this reason it is also used in auto-immune conditions such as rheumatoid [...]

[stef-manning]

“My goal in life is to survive. Everything else is just a bonus.”

Getting REAL sick of your shit, Lyme/Bartonella/Babesia....

I have been laid up all week.  Absolute muscle weakness, extreme lethargy, vision spots/comes and goes, vertigo making me fall, nausea, severe spasms and convulsions...and NOW I get to miss out on my girl's bachelorette party...I have been looking forward to this for such a long time :(  I'm so sick of Lyme making it's own plans, BUT, I do know this herxing is not as bad as previous times, so i have hope...keep on truckin' for now.

Love you all... Stef

[stef-manning]

Ok…day 3 of my doxy/lev/azithro treatment. I’m trying to document my spasms and symptoms, but I can definitely share BRAIN FOG IS UP…epically up…joints not too bad with magnets, but muscle/nerve pain is tear inducing. Some spasms/light seizuring (yes I can categorize them based on severity now lol), light sensitivity/migraines, sweats and chills, vertigo (tripping a lot, falling down) and anorexia/no hunger/desire, so I’m forcing myself, feels awful, lol, but no nausea means I can approach the dilemma with that method. Other than lethargy, just trying to keep up, have intermittent rest and documenting the herxing are my priorities for now

LOVE…. Stef

[stef-manning]

This is how I treat my severe pain, in my knees anyway...TIGHT wrap, so tight it numbs, holding a large neodymium magnet to release pain/pressure, over top of Lidocaine patches on my knee caps, and those awesome microwave heat things that produce moist heat. Totally cool and natural for someone my age lol...

[stef-manning]

Why Can't I Get Better?

I'm trying to read this book by Dr. Horowitz.  But, the brain fog, cognitive functions, mind trailing off (imagine the ultimate space out) make it hard as hell to get through, but I'm keeping my slow and steady pace.

Since it has been years since my diagnosis, I felt it would be good to share what has happened since my 2 years of oral antibiotics.

My symptom list has lessened greatly, as well as the severity.  I now have the following:  joint swelling and joint pain that most cannot imagine, brain fog and difficulty concentrating and forming words, gastroparesis, light sensitivity, vertigo/motion sickness, enhanced allergies to smells, neurotoxins, some nausea and anorexia on a much smaller scale,  involuntary muscle shakes and spasms (mostly in my legs,) lock jaw, lethargy, and every 4-6 weeks, like clockwork, I need to sleep for 2 days...I am a zombie...brain and body will not obey, they just give out.

Currently I am visiting a LLMD and another doctor that will hopefully get me on the PICC or intraveneous antibiotics I needed from the get go, but was denied, even after positive bloodwork for Lyme and co-infections.  THIS COULD CHANGE MY LIFE AND GET ME BACK TO A PLACE WHERE IT FEELS LIKE A "GOOD NORMAL," vs. the normal I've come to accept with this disease.  I'll keep you in the loop!

If you have any questions about neodimyium magnets, my treatment and so on, PLEASE let me know!  I have tried everything from cat's claw bark, traumeel, crystal therapy, heating pads, bengay, acetaminophen, Advil, Aleve...NOTHING worked like stronger pain meds which only lead to accusing looks and side remarks about my "having a dependency problem," which only destroys me emotionally...these people judging me cannot even begin to imagine the hell I've been through and face on a daily basis.  Otherwise, epsom salt in HOT HOT bahts, extreme pressure with wraps and heat work...and now these magnets.  It feels like all pain and pressure are released...I cried because I was astounded...the first real relief I've felt in years...but these are 250 lb pressure magnets, not easy for travel, they attract and deactivate a lot of items, so they are a stay at home tool for now unfortunately.

Stay strong!!!!!  THERE WILL BE A DAY YOU FEEL STRONG ENOUGH TO CARRY ON WITH MORE NORMALCY...just take it easy and DO NOT try to rush yourself!

LOVE and HUGS FOR ALL,

Stef <3