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For all my Lymies out there

I’m currently working on my book “Predictably Unpredictable”- a book all about my lyme journey and then some.

I’m searching for anyone who would want to share their story/testimony/transcript- whatever you’d like to call it, so I can include others stories in my book. [I am not using names in this book- as I respect doctors and patients privacy, so you will be given a name for my book]

If you’re interested, I would LOVE to hear from you. Tell me your story, so I can tell the world. #stopthesilence #ChronicLymeDisease #Babesiosis #LymeWarrior #Bartonella #InvisibleIllness

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Jan 6, 2023

Today I’m feeling quite awful. My brain feels in the clouds, anxiety level ridiculous, left side weakness. My extremities don’t want to do what I tell them to do. There’s a misfire between my brain and my body. I’m just under 2 months of being ill for 5 years. 5 years. Our youngest daughter just turned 5. She doesn’t even know who I am. The real me. The not sick me. The fun me. The active me.

I’m feeling so down, hopeless, sad, guilty. A burden.

I’ve been able to stay somewhat positive- as much as one can with this disease- but 5 years? That’s a big chunk of time. Our oldest son has 5 years of the real me. Our middle child had 3 and our youngest had zero.

It’s wild to me how an illness can- for me- in a matter for just 3 days take over your entire life. Your whole being. Your soul.

I’m exhausted. I’m so sick of being sick. #ChronicLymeDisease #Babesiosis #Bartonella #LymeDisease #InvisibleIllness #LymeWarrior

10 reactions 5 comments
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The Pandemic caused me to be a hoarder and a slob

#Anxiety #Depression #LymeWarrior #TraumaticBrainInjury #traumatic grief

My house looks like a slob lives here. I have paperwork all over in every room. Just looking at it hurts my brain. I try and clean it up or organize it but I end up just moving papers in a different spot.

I get into bed at night with trash on my bed. I have to move it all just to make room for myself. I lay there praying to God and asking why? Why did all those people have to die. I cry myself to sleep praying to see my loved ones that were taken since the pandemic started.

I had just gotten my life back after a 14 year battle with co-infections from Lyme disease. I finally was leaving my house, seeing my friends, shopping. I had 9 months of somewhat of a life back then I was forced back into my house. Then in 2020 I got bit again and im back fighting for my life again. New symptoms to deal with. I grieve the life I had before.

What I lost besides loved ones was myself. I don’t know who I am anymore. My first grandson was born during the lock down. I was able to see him 6 feet away 3 days after he was born. It was like I was looking at someone else’s grandchild not mine. I was not aloud to hold him because I can’t get a flu shot. The last one almost killed me.
I found out later everyone was holding him except me. This was so hurtful and my son allowed it to happen. It started to become to painful for me to even go to see him. What was the point if I had to watch from 6 feet away. I still do not feel any connection to my grandson and that is my son’s fault. He is 2 years old now. We aren’t aloud to babysit him or take him anywhere by ourselves but her parents are. I pray to God I’m still alive when and if another grandchild comes.
Funny thing I was aloud to hold my friend’s grandchild with no problem. When I was able to hold my grandson I was in a hazemat suit he was 8 weeks old. No one else had to wear one except me. Now that’s personal. I had 5 friends become grandmothers and they posted it on Facebook no one was wearing a mask or a haze mat suit. I’m not even aloud to show pictures of him to my friends because he’s not old enough to consent to it.

I had to go into therapy because of this behavior which was personal and not due to the virus. At least that is what I was told by my therapist. My heart is still broken and it’s still beating but for what. ?

This is not the way it was supposed to be. This is not the life I wanted or imagined. I am just existing.

I know hoarding crafts that I will never make, jewelry I will never make it has to stop. A lot of stuff I bought most is now expired. Did I throw them away? Nope.

I could keep writing about all I have lost but everyone has lost. So there is no point I guess. I did lose my Mom to the virus watched her die over zoom for 9 weeks. Then I found my best friend, my brother dead in his apartment. I think he was murdered but I can’t prove it. Now I deal with a fractured sternum and PTSD from that.

Hoarding is caused by lost, trauma, stressful life events, a brain dysfunction. I’m not putting anymore labels on myself. I just wish I could stop it. I wish I could afford someone to help me get organized as I no longer can do that. I can’t afford much of anything. I sell things to make money but it’s not enough. I’m too sick for a real 9-5 job. I do have a on line wholesale shopping club with weight loss products but that’s still not enough. I’m worrying myself to death literally.. I need extensive dental work due to lyme. I was scammed out of my savings for that. More loss. It effects me emotionally, physically, mentally.

I’m just rambling now it’s late here and my brain is tired. Im actually getting tired of living because it’s just so damn hard. I’ll write some more later. Thanks for reading this post. Since 2019 I lost 27 friends and family. Isn’t that enough???
#LymeWarrior #PTSD #LivingWithPOTS #PudendalNeuralgia #ChildhoodAbuse
#BrainInjury
#MemoryLoss

1 reaction 18 comments
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Forgiveness = Freedom & Peace

I’m sry this is a lil long. I am 52 but the baby in my fam. 3 brothers and 1 sister who passed. One of my brothers who is the only married one said they considered me more like their daughter then a sister.
We were extremely close talked on the phone all the time sleep overs & vacations. I then got sick Lyme twice then diagnosed with fibromyalgia.
I unfortunately was not able to work any longer. I had loved working and loved my career. My company ended up laying off 90% of my department. I was absolutely crushed. At the time I had needed back surgery and ended up getting an anterior lumbar fusion.

When I spoke with my brother he felt that I could and should still work. He and my sister in law started saying that I should lose weight (which they had not known I has lost a considerable amount of weight)
Then they went on to say I should stop drinking which again because I had quit smoking due to the surgery I also stopped drinking.
They then said A LOT to me a lot of things that were out of line. They then proceeded to say the most painful thing to me.
Which was they hoped that I wouldn’t get approved for disability. Now at the time my husband was awaiting his disability as he was hurt on the job. So financially we were struggling. (Sry so long).

So fast forward 10 years I have been on disability and my brother and sister in law do not speak. They told my mother they do not know why we’re not speaking or why I’m mad at them. I think my biggest pet peeve of the whole thing is they said they looked at me as a daughter. Yet they never reach out. We have had a few special occassions were my daughter wanted them there, so we invited them.
They have never invited us to anything. I don’t want to be petty and want to do the whole forgive and forget but the question is I am worthy are they worthy of my forgiveness or can as I have my own family my husband and daughter. Write them off as I feel they did me ?
Whatcha ya guys think

#fibromyalgia #fibrowarrior
#fibrofighter #sickofbeingsick
#chroniclymediseaseawareness #lymesucks #LymeWarrior #lyme
#invisibleillness #spoonielife #chronicpainsucks #epsteinbarr
#ra #rheumatoidarthritis #ic/BPS #interstitialcystitis #ptsd #sciatica #pituitarytumor #nervedamage #ankylosingspondylitis #LymeDisease #LymeWarrior #chronicpain #chronicpainsufferer #ddd #migraines
#immunocompromised #forgive #familydisfunction
#InvisibleDisability #DisabilityBenefits #anteriorlumbarfusion
#LymeDisease #ChronicLymeDisease

1 reaction 3 comments
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So much stuff!!!

I have been having a really hard time and it’s been a reallly long year for my family.
About me I have Fibro, RA, IC/BPS, sciatica AS, DDD, SpinalFusion spinalstenosis etc..

I have my oldest brother who had a stroke this year. We have always spoken and never had and any issues ( unlike my other siblings that’s another post).

When I was younger my brother more than once sexually assaulted me.
I don’t know if it actually considered that
I was sexually assaulted by my father when I was a child and raped at 15 by an older man.

My brother who is 20 years older than me tried to kiss me on more than one occasion this was when I was in elementary school. He I found out a few years ago was also along with my brothers and my sister were sexually assaulted by my father as well.

So the situation is idkw but after he had his stroke I just couldn’t speak to him.
I did only speak to him because of my mother. I did tell my mother when I was younger and I can only say she made excuses for him and begged me not to not talk to him.

I love my mother very much and we have a very good relationship except for this issue. So I haven’t spoken to him since his stroke and I feel extremely guilty for it.
He has been trying to get in contact with me but I have thwarted contact.

My husband knows and of course he says I should not feel guilty and doesn’t understand why I had been talking to him all these years.
I don’t know if I should say something to my mom who is 85. I don’t think it would do anything but upset her or cause and arguement. Or bother saying anything to my brother. Which idkw I feel bad saying anything which doesn’t make sense.
I know I should have gone to therapy years ago but does anyone have any suggestions how I should proceed in the interim ?

#SexualAbuseSurvivors #SexualAssault #SexualAbuse #SexualAssaultSurvivors #ChildhoodSexualAbuse #SexualTrauma #SexualAssaultAwarenessMonth #RheumatoidArthritis #Fibromyalgia #Fibro #InterstitialCystitis #sciatica #DDD #AnkylosingSpondylitis #painfulbladdersyndrome #LymeDisease #ChronicIlless #ChronicLymeDisease #LymeWarrior #Spoonie #PituitaryTumors #PituitaryTumor #SpinalFusion #gastric sleeve surgery #Anxiety #CPTSD #PTSD #PTSD

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Butterfly Kisses. 🦋🦋🦋 #ChronicIllness #ChronicLymeDisease #Babesiosis #LymeWarrior #LymeDisease #butterflykisses

Living one moment at a time can make hard days easier. Keep an eye out for 🦋 butterfly kisses - a butterfly kiss is a moment you’re glad you got to have. 😊Anything, big or small. Good coffee. A surprise encounter. A belly laugh.

The thing about butterfly kisses is this: the more you see, the more you see.

1 reaction 9 comments
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Chronic Pain vs Pain Mangement

I have chronic pain I have Fibro, RA,
ankylosing spondylitis, IC/BPS, sciatica, spinal stenosis, arthritis etc.....

So I am being told by my Pain Dr that I cannot be on pain meds for the rest of my life. Now my pain is chronic as in forever like we know these dx’s are uncureable.
So how can a pain dr take the stance of taking away my pain pills every month ?
She said to me you can’t be on pain meds forever.

You think this is what I wanted to be on a ton of pills a day?
So you’re start weaning me without telling me down. Thing is I foreshadowed this coming so I got my medical marijuana card. In hopes that this can help.

I realized beginning of 2020 she had cut one month by 25 pills without telling me then she started talking to me about cutting more and more and more.
From when we started (year and a half) she already cut me down by by 75 pills and she’s not finished.

I am pisssed as all hell but my husband doesn’t think it’s a big deal. I’m just like if my conditions weren’t chronic and uncureable ok but I’m still gonna be in pain.

4 years ago I had a gastric sleeve so a lot of medicine I was on I was told I could no longer take because stomach. No longer take inflammatories. Now at the time of the surgery I was also on OxyContin for quite a few years by then.

I was told I could no longer be able to take them and was also told by at least 12 dr’s that I would either never be able to get off or it would take years to take me off.

Well we figured out a schedule and I was off them in a month and a half. That’s when they put me on what I am now and she has been trying to crazy weening me every month.

My main concern is I’m 52 I’ve been a warrior now for 20 plus years. It makes me thou really scared to think of what my life is going to be like at 60 or 70. The woman in my family live till late 80’s. Any body else dealing with a similar situation?

#RA #RheumatoidArthritis #Fibro #Fibromyalgia #ic /BPS #InterstitialCystitis #PTSD #sciatica #PituitaryTumors #Nervedamage #AnkylosingSpondylitis #LymeDisease #LymeWarrior #ChronicPain #chronicpainsufferer #DDD #Migraines

26 comments