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Please Keep Going

3/9/2022

24 Comments

 
It’s been a while since I’ve blogged, but I felt deeply compelled to come back with a post that may be my most important one yet. And I hope that this reaches through the stratosphere and finds exactly who needs to see it. I pray it does.

Some of you may be new, and some of you may have been around for a while. Whether you know my story or not, I’m going to quickly condense it to make a much larger point.

In 2006 I went to college feeling run down. What transpired from there was 5 years of struggling to get through college while my symptoms snowballed to unmanageable proportions. In 2011 I was finally diagnosed with neurological Lyme disease, and in 2012 I became fully bed bound. I don’t use “bed bound” loosely or in a cutesy sense. Oh no, I spent every waking second in bed because I was too weak to function otherwise. I would shower once a week with assistance (sometimes as a sponge bath), and if I made it down the stairs once every 3 months my family would cheer. In order to celebrate a holiday like Christmas I would have to prep for days and save up energy praying I had enough stamina to put on normal clothes and walk down the stairs for an hour, but 75% of the holidays got skipped because I couldn’t even do that. At many times during those 8 years I didn’t think I would make it. Yes, there's the punch line... this was my life for 8 years. I lived like that for 8 solid years. I was bed bound, weak, and in pain every waking second. Treatment was grueling, and many of the things I tried over the years were unsuccessful. The pain I lived in was unrelenting, and I have a hard time speaking about it now without crying. I do not know how I managed it, and still to this day years of my life feel like they occurred in a total fog of war. I was weak, I was so thin you’d think I’d break if you touched me, and each day I survived was a miracle by most doctors who believed my body wasn’t strong enough to withstand the hell I was living through. From seizures, to excruciating pain, to organs slowly failing me, there was no end in sight. Few people who saw me up close and personal during that time know just how bad it got. Trust me, it was grim. I walked through this darkness with no real hope - I had a few Doctors who tried to help, while many gave up and said there wasn’t more that they could do. Did I listen? No. I found someone else and tried again. I tried over and over against all hope, until something finally clicked. My climb out of the depth of my illness was slow, and it was hard fought every single step of the way, but I am here now.

You see, my existence was hell for so long, and I was clinging on to life each day. But today I type this as someone who is thriving - I work a full time job I love, I am active, I’m independent, and if you see me you’d consider me a totally normal person. Yes, I still have a chronic illness that I take lots of meds for, and yes I still have aches, pains, and other things I deal with. But my life has done a complete 180. To think I could have never seen this moment because the Doctor's and people around me convinced me to give up makes me shudder.

I don’t repeat my story and my message because I think I’m some kind of inspiration others should flock to and admire. No. I repeat my story because I pray you read this and choose today not to give up. I pray you can look at me, someone who was stuck in a bed for 8 years in a living nightmare, and remind yourself that you can find a way out too. Please do not ever let a Doctor, a stranger online, or even your own family convince you that you are a lost cause that should end their life. Don’t let your own thoughts convince you that you’ll never get better. When it is your time, God will take you. When it isn’t your time, He won’t. So if you’re still here reading this, then you are needed on earth. Even if everyone says you’re beyond help, keep going. Find a third, fourth, hundredth opinion if you have to. Keep going. Your life has meaning, and when you realize there are billions of people on planet earth, you’ll see that a handful of naysayers don’t speak for everyone. Someone out there can help, and all I need you to do is hang on until that arrives. Please keep going, keep fighting, and don’t ever let anyone gaslight you into feeling as though you aren’t worthy of life.

Why am I saying all of this so fervently? Because I recently watched a young woman with Lyme take her life while her friends, family & a Facebook page of 200,000 “fans” sat and watched. Her doctor said they couldn’t do anything more to help her, and she believed them. She felt all her dead ends and road blocks over the last few years were a “sign” from God that she truly can’t be helped, so she should die. And so, she did. First they took all her meds away from her, and then they removed her feeding tube, until slowly after 6 weeks she starved to death and passed. She did all of this while THOUSANDS of people cheered her on. It was like a mass psychosis, and it makes me sick to think about. If she was meant to leave this earth then it would have happened naturally. It wouldn’t have happened by withholding life force until her organs couldn’t continue on. For her to make that decision privately is one thing, but to watch it be celebrated in this community broke my heart. She left this earth thinking that just because Doctors A, B & C said she’s a lost cause then it must be true. And she sent a message to thousands of impressionable patients (young and old) who will now believe it applies to them too. The emotional mindset of someone dealing with a chronic illness is fragile at best. Depression and self-loathing runs deep in this world, and it does not take much to convince someone in that kind of unstable mental space that they too should die because it's easier that way. If I would have EVER listened to Doctors like that I would not be here today - thank God I didn’t.

If you’ve seen that particular story on social media, I pray you hear my story now and that it nullifies anything you saw or “learned” from her. Please do not give up, you are not beyond help. And if that moment ever were to come, God will decide that. Until then, no matter the pain and despair please allow me to hold hope for you that you will come out from this darkness. Allow me to remind you that out of the black of night emerges a new morning each and every day. You are worthy of life, and you are worth fighting for. I beg you to hold on, and never let "death" being glorified and craved in such a grotesque way make YOU think that you should do the same, or that you are worthless and beyond help with your illness.

Please, keep going.

xoxo,
Christina
24 Comments
Jen
3/9/2022 05:28:30 pm

Wow. I’m pretty sure I know who you’re talking about and I had no idea that is what happened. I thought it was similar to another warrior I read about that couldn’t eat anything because of MCAS. thank you for sharing this, I’m sure it wasn’t easy knowing what a following this person had.

Reply
Jana
3/10/2022 11:34:38 am

From what I understand that is part of why she stopped her feeding tube because she could not eat anymore due to severe mcas. I have MCAS myself and until someone has literally walked in the same shoes or in that same situation we don’t really have a right to judge those difficult decisions.

Reply
Christina
3/10/2022 12:07:29 pm

Hi Jana!
I had MCAS very severely myself - I was down to 5 safe foods and lived on shakes and homemade crackers for months and months on end. I weighed barely 80lbs (I’m 5’6) and had trouble with my organs. Many conventional mcas treatments didn’t work for me either. I obviously don’t know what exactly hers was like, but she was on enteral nutrition and it wasn’t until it was withheld very purposefully that she passed. Either way, doing it so publicly in front of a large fragile community was negligent and I don’t think it’s okay to watch that be celebrated without speaking up.

Christina
3/10/2022 12:12:36 pm

Thank you for reading! I had severe MCAS as well that didn’t respond to any of the conventional treatment. I had only 5 safe foods and my body was deteriorating month but month. I was told many times I was beyond help, and I’m grateful I kept going. I may not know why she chose otherwise, but her MCAS (or other conditions) isn’t what naturally took her life. She took her own by choosing to withhold meds & food for 6 weeks. Even any moderately healthy person would pass in that condition, and I wish more people understood that. Thank you again for reading, please keep fighting the good fight ❤️

Reply
Rebecca
3/10/2022 02:50:29 pm

Thank you! Thank you! For sharing your story, obstacles, and survival. I can only hope this post reaches everywhere. So many regardless their diagnosis can relate, be encouraged, survive, be happy and live!

Reply
Christina
3/10/2022 04:53:33 pm

Rebecca, thank you thank you. I so appreciate your kind words!

Laura
3/9/2022 09:05:45 pm

I too never gave up. I was undiagnosed, misdiagnosed, untreated and treated horribly. I am a fighter and survivor. I’m here for my family, my grandchildren, my colleagues and for others who need to see what hope can do.

Reply
Christina
3/10/2022 12:08:01 pm

Laura,
I am so so proud of you for being a fighter, thank you for reading & sharing ❤️

Reply
Anna
3/10/2022 12:18:25 pm

Thank you for sharing. Thank you for fighting. Glory to God for your recovery and may you continue to progress! We need your voice out there in the lyme and old community.

Reply
Christina
3/10/2022 12:30:25 pm

Hi Anna! Thank you so much for taking the time to leave your comment, it means a lot ❤️

Reply
Mari
3/10/2022 03:49:30 pm

Thank you for having the guts to post this...many need to hear your voice and words of encouragement. They are so valuable, and I'm bookmarking this page for when I have one or many bad days. The emotional and physical pain is indescribable, and having many children made my situation more complicated because my heart hurt for them as well. I love hearing how well you are doing;it's quite the inspiration, and what I needed to hear today. Bless you.

Reply
Christina
3/10/2022 04:53:06 pm

Mari, this meant so much to read, thank you for taking the time to write this. I’m praying for you as you continue to fight through on your hard days

Reply
Kathleen
3/10/2022 08:14:23 pm

Well I appreciate that your intent maybe 10 courage people to never give up, and of course I'm glad you are doing better because you finally found the right practitioner for your particular situation, I find this a very callous post and I hope that none of this young woman's family and friends see that you've written it. I do not believe she gave up! She was a very complicated patient who started out with a root cause of Lyme disease but ended up so seriously ill that there was not much that could have been done to prevent her death. You have no idea how hard she and her family may have worked to actually get her all the right care and still she could not get better. I read many of her postings and she met her death with grace and dignity, something not many of us could actually do so well. Again I hope nobody who loved her reads your words because they will only serve to bring more heartache to a heartbreaking situation.

Reply
Christina
3/10/2022 08:44:26 pm

Hi Kathleen! Thank you for reading and sharing your opinion. I do however wholeheartedly disagree. She did this very publicly with an audience of 200,000 people. This audience is made up of incredibly fragile patients who will see what she did and think “well my Doctors also don’t think I can get well so maybe I should just die.” Or “if she couldn’t get better why will I? I should just die.” The ramifications of her public glorified death will have a ripple that her family will never publicly see. Do you know how I know this? Because I have ran this blog since 2011 and I’m the one who gets the emails from patients with no hope who want to take their life. I’m the one who has spent hours and hours on phone calls with patients around the world who didn’t want to live another day. So I absolutely know her story will do unimaginable harm. Someone’s personal private choice is theirs to make, but once they become a public facing person like herself who sought out the medium of social media that changed.

Reply
Nanette
3/11/2022 09:11:20 pm

My heart breaks at how severely ill a person can become that they don’t want to live any longer.

My daughter was among those who become the most severe. She was wholly bedridden five years, level 9&10 pain 24/7, and so severe with sound and light that she remained in a dark room, and I was the only one that could come in, and when I did it overwhelmed her body so greatly that she’d often have seizure activity & hyperventilating fits and I had to quickly leave.

When we discovered mold, not just Lyme, we moved her to the desert on a mattress in the back of our van. She began to heal, and even more recently she’s having greater healing. Today she can walk a mile with her dad, and she’s radically better.

There were many times that I could not understand how God would allow such terrible suffering.

I understand what you are sharing, Christina. How such a public death choice could impact others. I wonder why she made it so public? It honors assisted suicide too much to me to make it that public. And seems it could be a way of inviting others to do the same?

Although I cannot understand such severe suffering, I had to trust my daughter into God’s hands. She believes greatly, and I always knew that death did not belong in any of my persuasion.

Reply
Lauren link
3/16/2022 12:48:08 pm

Christina, thank you for speaking up about this and for encouraging others to not give up. I followed that young lady's journey too, and I was troubled by her decision and thought how grateful I was that I didn't hear that story when I was at my worst. I have a similar story to you that includes bartonellosis, babesosis, hormonal problems and MCAS, and I was extremely sick also. But I'm getting better now!

Reply
Donald
3/30/2022 06:32:56 pm

Awesome to hear about your recovery I’m dealing with crazy neuro symtoms and bed bound for over a year now getting worse and worse. Brain electrocuted at the beginning now just constant hell. If you have time to email me please do would like to know how u got better?

Reply
Joanna Jasa
4/7/2022 11:51:46 am

Hello Christina,
I really appreciate this post. I was following this girl and her story and hope people with Lyme do not give up as many doctors are not well versed on how to deal with Lyme. Thankyou

Reply
Mark Frank
5/16/2022 04:06:32 pm

Hi everyone.
Not sure where to begin.
Thank you for writing your story. I truly understand. I am not well mentally and here is why.
I'm 64 and have been in pain every second of every day for 22 years.
Over those years I had 5 negative lyme tests.
I specifically asked my drs to send blood to Igenx lab..my bad for believing they did.
All negative.
In 2001 had left facial numbness tested for bell's palsy and stroke..neg.
IBS diarrhea for 2yrs, sweat so bad had to replace mattresses 3x.
Then it gets bad nerve wise.
Went to all of head neck upper chest arms to fingers, feet felt like I was walking on crushed stone. Spasms so severe I would flop on floor.
My skin would literally pop-up when I got shocks. Times I couldn't touch my hair felt like scalp was rubbed raw. Lost my balance in 06 and pain was now chronic. Dr's said idiopathic, after muscle and nerve biopsies. Nerves are not regenerating. Spinal fluid too. Both nervous systems are affected. They gave it a name
Chronic Polyneuropathy. Tested me for MS, ALS
Cancer, GB syndrome and so on.
I was dealing with unbelievable pain that no pain med would touch.
Taking my life was high on my agenda.
So bad I watched suicide clips to make sure no mistakes were made.
My life was falling apart. Being an athlete and very active in the outdoors "Maine Guide", I felt worthless not being me..
In 2018 I started losing weight fast, a person suggested seeing a lyme specialist.
Nearly 50 lbs lost I had nothing to lose.
1st test..Borrelia lyme and TBRF
3 months antibiotics
2nd test..Babesia
6 months Atovaquone (covid19) Jan20
3rd test. 2 types of Bartonella
Des bio system and AI drops and vials.
Recently tested positive for Anaplasma.
I have been 100% disabled since 2010.
As I sit here writing my story, I ask myself is there someone else that feels like me.
I dont sleep in fact last night was brutal with hourly spasms to jump me out of sleeping.
If you are curious to what I feel..here you go
A live electric wire attached to your skeletal system. In addition. .when your foot falls asleep and that worst part when it wakes up..that's 75percent of my body non stop 24/7.
Leg and foot bones feel like they are broken and not set right and then put in a cement cast.
Can't close my eyes and not lose balance. Half my tongue feels like it's burnt. Face, like you slap me with a cookie sheet. I vibrate so much my teeth chatter. Walking in afternoon and evenings is limited. My hands use to wobble, now they just temor and spasm. Well, that's an improvement lol. Yes I can still laugh.
It's who I am and have been for quite some time. I guess that I adapted in some ways.
But, I'm getting tired. Fighting every day is difficult to say the least. I make the most of every moment. Thank the Creator for each day.
I cannot afford to continue paying for Naturopath or lyme specialty cures. I have insurance but seems to be a cash market.
I dont even know where I am going with this.
But if anyone can relate or if I can help you please respond. Sorry i ramble a bit.
No I am not hurting myself..just to be clear.
I want and need answers.
BTW...what bit me?
Deer and lonestar ticks
Black widow spider..never was treated for spider bite which gave me seizures 2 day after bite..any info on this would be appreciated.
Mark




Reply
Donald
5/16/2022 04:37:09 pm

Mark have you tried detoxing. I have bad neurological fatigue and feel posioned if I stand or walk 0.25 miles to long . My legs are weak and shaky. It’s disgusting truly. I feel like there’s no way out. My brain is super sensitive and really bad. Do you feel posioned snd stuff standing right long and walk and clenchy.

Reply
Mark Frank
5/16/2022 07:28:11 pm

Hi..
Sorry you feel off.
Yes I have tried detox and many other potential help aids. Sad to say it's beyond that.
Hope you get better. Be thankful for everything everyone and be good to yourself.
Mark

Reply
Donald
5/16/2022 07:42:05 pm

Mark- Do you have trouble standing up because your brain mark? Like a neurological fatigue and weak shaky legs? Thanks I will try I think my brain is shattered beyond repair can’t breath stand up

Reply
Wanda Sue Figueroa
8/12/2022 09:46:57 pm

I was diagnosed in July 2016. I did not have any rash that I know of. I was bit by a tick when I was on vacation in Gettysburg, PA. I became very lethargic and my joints, especially my neck was hurting, some flu-like symptoms. My doctor checked EBV, Mono and Lymes. Lymes was positive. Tried 21-days of Doxy. Felt a little better, but then the bottom dropped out. Retested by PCR and positive. I was on 30-days of IV Rocephin. I felt better, but still had bad days, so I decided to start on a Natural Lyme Formula treatment protocol from Health Herbs Clinic (ww w. healthherbsclinic. com), the treatment effectively treated my Lyme disease condition. The stiffness, fatigue and joint/muscle/body pains has subsided, I feel better overall than i have felt in years. 3 months after the treatment, I made an appointment with a rheumatologist in Houston, after examining me, she looked at me and told me I did not have Lyme disease because all the usual Lyme symptoms had stopped. Its almost like a miracle! I Just wanted to share for people suffering from this disease💚

Reply
Debbie
1/2/2023 12:25:36 pm

Thank you I have just come across your page when researching burbur pinella. So pleased you are leading a full life now. I have been caring for my now 38 year old daughter for 12 long years. She has lyme and co infections. We have only recently found an ILADS Dr so I hope she is now on the way back to health such as you have found. I will be thrilled to see her sit up and talk . it will be a start... I will always remain hopeful

Reply



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