To take the medicine or not

There is a new treatment for Lyme disease. There is always a new treatment for Lyme disease and I can promise you, you will not list one or come up with one that I have not tried. I have tried them ALL! And they have all been touted the cure all and they have not cured anything.

The newest medicine is listed in the article below.

https://www.lymedisease.org/disulfiram-kinderlehrer/?fbclid=IwAR2QGqxOcqYWYWFqLt182JCf_oyzqUYhuHRYlNBD7JpCDl0X1Aqq_eda0ZA

Disulfiram.

To try it or not. I”m meeting with my doctor on Friday to discuss it. Meanwhile I’m still processing the toxic heavy metals that are in my system that came up on my blood work. Meanwhile I’m still processing the toxic levels of other chemicals that have come up in my system. Each with treatments that I have yet to be able to tolerate but am willing to try again.

I have seizures.

I have a muscle disease confirmed by a muscle biopsy 13 or so years ago. I have a bone disease and currently have a hip fracture.

I have PTSD.

I know we are not defined by our diagnoses or 10 of them but they do come with some definitions linked to me. I am in chronic pain. I am unable to sleep. I am …I just am.

Do I take the med with ALL of it’s side affects in hopes of knocking off one thing from my list? I’ll be left with disintegrating bones and muscles with no cure BUT maybe it could alleviate the seizures? Or other symptoms?

Or is it just the newest hype. Newest fad. Newest hope that will bring along with it more suffering when I’m trying with every breath left in my body to stay positive.

I just don’t know.

I’m open to comments and thoughts as I am truly at a loss at this point in my life.

I had a cry breakdown in CVS and no one seemed to mind

My husband was out of town today and I knew I had to make a trip to CVS to get a glucose monitor. I’ve made this trip once a week for the last many months as part of what I consider my physical therapy. It is only 8 minutes from my house down a back road. I stop at a church prayer garden on the way. I have done this with no problems so many times. Lately, things are different. I don’t know why. I don’t know what is happening to my body and why it is cramping or becoming so debilitated with pain causing insomnia and every other sort of thing. Is it the Lyme disease, the muscle disease? What is it? I won’t know. There is no way to know.

It was supposed to be a simple trip but the Doctor’s office did not get the correct prescription…twice…the forgot the strips, then the needles, then forgot to name the exact glucose meter. Ridiculous! While waiting I decided to stop at the prayer garden because their is a lot I am grateful for and a lot I wanted to pray about.

I am so glad I stopped. Their was a flower that stopped me in my tracks. I just looked over and it called to me. As I looked down there was the teeny tiniest tree frog in the flower. I adored him! I took his photo from every angle I could think of. Then I went and prayed at the cross.

The CVS is only across the road from the church garden. I made it back to the pharmacy only to find out they still had not gotten the prescription right. I stood as long as my legs could stand and then I squat down. I waited. 10 minutes. 20 minutes. Finally I sat down and leaned against the rack of bandaids. I couldn’t stand back up and sit in the chair because I’d have to walk to the chair and get up again. I was cemented there. And everyone stared. Tons of people walked around me, by me, scooted in front of me. I listened to everyone complain about not being able to find this or that and have outright fits to the employees.

I felt overwhelmed. I started saying to myself, ” I will NOT have a cry breakdown in the CVS” over and over again. Then I decided to make it positive! ” I will think of the little frog. I will focus on that precious frog in the garden.” I repeated it over and over again in my head until the pharmacist came over with my prescription that was finally ready. I stood up and gave my card and he says to me, ” What did you just run a marathon or something? What’s up with your legs?” I immediately said, ” I have a muscle disease. I wish I would have just run a marathon. It feels like I just ran a marathon. But no, I did not just run a marathon.” To which he said nothing. Blank face. Not a word. I don’t know what came over me but I started to cry. I got my two bags and carrying one in each hand walked very very slowly limping across the entire store past each person who stopped and looked at me and I cried and I cried. And no one seemed to mind.

I got to the car and knew my heart rate was too high and I would need to rest in the car but a person with a disabled sticker pulled up and was waiting on me. They had to wait. I could not make my body do what it could not do. I cried all the way home and then I just stopped. I felt no better. I felt nothing. I felt numb.

I lay in my bed trying to think of something good. I thought of when I used to swim to my Nana’s house across the lake. How sometimes when I got there she’d be asleep. She always left the side door open. I would stick my head in and tip toe soaking wet over her shag carpet and peek in her room and she’d be asleep. I lay here thinking of how cold her house was and how I loved the way it smelled. I loved the way she smelled. Then I thought about the little frog in the flower and took a nap. End of story.

The prayer garden and health

I stood in the rain and took these. I felt drawn there to pray that day even in the rain. My camera got wet but it survived. I’ve never prayed for myself but I did this day. I have contracted lyme disease again from a tick and after not getting better I saw the doctor this past week who ordered 30 days of injections of antibiotics. They are excruciatingly painful and finding an area that is not atrophied from my muscle disease has been difficult. The picture of the shot is the last one if you have an aversion to needles. The needle is just huge!!! And my heart rate is through the roof just laying here. But I needed to pray for myself because this journey in my health totally aside from mental health has become very painful and difficult. That one rose gave me a little hope though. I also stumbled across two photos my husband took of me last weekend when the horses came up. Pretty cool right! Such a mix of struggle and happy moments. I have to actively seek the happy moments though. Laying here in my bed just won’t create them.

I’ve already SEEN Dr. House

I haven’t been writing because my physical health has hit an all time low. My mental health has also hit a low. Someone mentioned to me a number of weeks ago (only the 50th person to mention it) that I needed Dr. House to fix me. Dr. House is a fictional Doctor on a TV show. So, I watched 8 seasons of house. I wrote down all of the differentials and diagnosis of different patients. Sadly, I was able to diagnose most of them in the first part of the show. That is what happens when you’ve been sick most of your life and seen hundreds of real life Dr Houses. Some of the diagnosis on the show…

Organophosphate poisoning

Wilson’s disease

Wegener’s disease

Acute_intermittent_porphyria

Neurocystercercosis

Cushing’s disease

Copper toxicity

Brucellosis

Sjogren

Epilepsy

Endometriosis

Whipple’s disease

Rickettsia

Q fever

Ascariasis

Hyperparthyroidism

Haemochromatosis

Heavy metal toxicity

Lead poisoning

Environmental toxin poisoning

Chiari malformation

Coxackie b virus

Epstein bar virus

Blastomysis

Toxoplasmosis

Anaplasmosis

Malaria

Zika virus

Mastocytosis

Polycystic ovaries

Malignant hyperthermia

And guess what…I have been tested or treated for ever single one of them. I’d copy and paste my labs but I have no space for media to do that but I have the labs that show qfever and all of the others. The point is I HAVE had Dr. House in real life. A ton of them.

I am my own advocate. I study diseases, advocate for myself, and then apply to be in case studies and genetic testing.

I was diagnosed with a muscle disease by muscle biopsy 11 or 12 years ago now. But the muscle disease lacked the genetic mutation component. I found a specialist ON MY OWN in England who has been studying my case since. I have been in a case study in Canada. I have been in a case study at the National Institute of Health. These are the top Doctors in the world and so again, I have SEEN the real LIFE Dr. House times 50 and I am still somewhat of a mystery.

Currently I am being studied in the US as part of a genetic case. He took on my case because of the England doctor’s referral. Everyone around the world has seen copies of my muscle biopsy tissue. Photos of my atrophied leg and shoulder. My case has been presented in Germany and multiple other countries. So far, the journey continues to find an answer. They know I have a muscle disease they just don’t know what is causing it.

They also know I have a bone disease diagnosed around the same time with no idea what is causing it.

I also had a past case of rocky mountain spotted fever and Lyme disease. I had no idea that a person could become reinfected. I just went to the doctor today after being bit by a tick 6 weeks ago. After 2 rounds of antibiotics, one trip to the ER, I am still very much not ok. I tried all of the herbal/holistic/natural approach and I have become sicker. So now come the big guns for daily antibiotic injections since this infection is affecting my heart rate and neurological system. It is deeply deeply upsetting.

I knew I was depressed when I stopped writing. I really knew I was depressed when I didn’t immediately renew my blog for more space to post my photography. I really knew I was depressed when I photographed a once in a lifetime wild horse and felt almost nothing after. I thought maybe it was my anti seizure medicine making me depressed. I thought that maybe it was too many triggers in the last month flaring up my PTSD and anxiety to an all time high. But when I told my doctor today that I truly wish I were dead she took me seriously. The infection is affecting my brain. We have to do the muscular injections of antibiotics. Can my muscles that are atrophied handle 30 injections? I have no idea!

I will tell you that I went to church on my way home and for the first time ever prayed for myself. I always pray there for others but today I prayed for myself. I pray in the garden outside, not in the church.

I’ve had many reasons to wish I were dead. Abuse, PTSD, illness, more abuse…but not until now do I wish I went to sleep and didn’t wake up. Usually a sunset would fix that or a bird or my daughter or husband. Now that this infection from the tick has affected me, I am more sensitive to chemicals, smells, everything is triggering. Everything is overwhelming. Everything makes me sad and despondent.

I just wanted to share my struggle. With someone. Anyone. My blog is about abuse and PTSD but that is really only part of my story. I have a number of rare diseases and I am tired of being my own advocate. I pray this man studying my DNA right now finds the answers because I am just tired. The PTSD triggers push me over the edge. I’m watching my body waste away and so aware the my mind is not far behind. I think I am just hoping for hope. For prayers.

I’m not writing this for suggestions. As you’ve read I’ve been seeing doctors at the highest specialist level I can see all over the world. I’ve tried it all. Even if I don’t get an answer, I hope for spontaneous relief of just one of my symptoms. I need someone to have hope for me because I am about all out. Not a good place to be. So if anyone wants to pass me some hope I will gladly accept!

That little bird that I posted for Linda’s contest…I went out in horrible pain, crying pain, terrible anxiety, terrible panic attack, and I found that bird! And I listened to her song. And she gave me a moment that made me think everything might be ok. That’s why I posted her for Linda’s contest. She was important to me. Giving me hope when I had none. Even for a second. I just need that back again.

Thanks for listening.

Their is no fix #chronic illness #PTSD

I’ve tried in the last year to live. I’ve pushed my body and ignored the pain. I’m not on pain medication nor have I ever been on any. But I live in chronic pain. Whether it is from the muscle disease, or the trigeminal neuralgia, or the vulva dynia, or the seizures, I am in chronic pain. Certain pains I have pushed through. The Lyme disease pain in my joints that makes each key I type feel like my fingers are in a vice (no clue how to spell that), and now the Rocky Mountain Spotted fever pain where that tick bit me a month ago that feels like someone is sticking me with a needle right this moment, is very real. The bone pain from the osteoporosis, which I was told could not possibly be from that but maybe from my copper levels or iron levels being so high, doesn’t matter because my shin bones ache as do my toe joints and my hips. I am in pain.

None of those things worries me as much as the multiple chemical sensitivities. That is something that I go great lengths to avoid having a reaction from. Sometimes I get that and the PTSD with smells confused. I think while at the dentist, “ OK, I have covered the dentist chair with a sheet to avoid fabric softener or cologne,and premedicated with an antianxiety medication and an antihistamine so I will be sure no stress caused seizures,” but I forgot about the multiple chemical sensitivities. I KNOW I have this which is why our garage door has not been fixed, our house has not been painted, our back rooms have not been renovated. I know this because when my neighbor sprayed with pesticides in his yard and I unknowingly breathed it in while outside, I got very ill and had to be medically treated. I KNOW I have this so I take precautions, I avoid being in the car when it needs gas put in it, etc. While at the dentist though, for just that moment I forgot.

They were making dental impressions for my teeth and my nose started to drip. I started to drool. I thought nothing of it until my entire mouth started to burn and my tongue went numb. Fast forward and four hours later, a few blisters in my lips and the roof of my mouth feeling like it got burned by eating hot pizza, the incident had passed. It took lots of treatment, care of the dentists and lots of antihistamines.

The incident itself passed but…

It hasn’t though. That was a few days ago. I am still haunted by it. Terrified by it. Paralyzed by it. I wake up in a sweat and anxiety attack over it. BECAUSE the reality of my life is this…if my house burned down there would be not one “safe” place I could go. I was reminded of the severity of the chemical sensitivities at the dentist and now I remember and cannot forget. Every hotel room has plug ins and fragrance and cleaners and sheets that have fabric softener. When my husband was away and staying in hotel rooms it took weeks to get the smell out of his clothes and some of them I just threw away because it made my nose run to even be around them. I couldn’t even wash my clothes somewhere else because I don’t know one person who uses no fragrances in their washer and dryer. The laundry mat would be a death sentence as everyone before me would have left a residue of 3 month stay in smell. It reminds me that all of the things that NEED to be done in our house cannot be done because it would affect my health and I don’t even have a place to go for them TO be done. So I sit here knowing I have no place I could go because I am a prisoner due to this health condition.

This feeling is so vulnerable I don’t think anyone has any idea. Even writing this I wonder if anyone in the world would know what THIS, just THIS feels like. To be in pain, to have to push through it day after day, and to have this underlying chemical sensitivity which should or could be rather called “allergic reaction to todays world,” is just too much.

Today I had to get labs due to the latest tick bite that has left me in much more substantial pain. We need to see, how bad is the infection, are there more than one infection from this tick. Because ofcourse four years of treatment for the original diagnosis was NOT enough I just HAD to get another tick bite. I wore a mask so I didn’t pick up anyone else’s illness. I brought something to sit on so I didn’t pick up anyone elses lotions or perfumes. On the way home all I could think, due to my PTSD, was, “ I just need the water to be working and the electric to be working so I can shower anything off so I can get in bed and try and cope with the pain that will happen to my muscles.” I was thinking this because of the smell of perfume that got on my hand from the prescription given to me. I should just wear gloves when I’m out but…carrying a pad to sit on and wearing a mask probably freaks people out enough. If they only knew…

The world goes on. My husband has a job, a life, runs errands, comes home with the colognes of every man he encounters on him and that is just life. No amount of cognitive behavior therapy will fix that part of PTSD and if it did then my husband coming home every day for the last 22 years from his job would have fixed me.

I have unfixable things. I have untreatable things. I treat and cope with what I can. There is some of it though that is truly unbearable. It almost makes me miss the “numb years” when I was robotically going through life 25 years ago.

But here I am now. My fingers throbbing with my heartbeat after typing this, knowing it is 2am and won’t be able to fall asleep and that there are no answers to any of my health problems. There are no magical places with no chemicals and no fragrances. There are no safe places for me other than right here in my bed which is still filled with pain and suffering.

It’s why I post the pictures I do. It is my effort to still live. But I have to tell you, that is becoming increasingly difficult and life as of late has become increasingly unbearable.

Throw in the broken cars and the broken well and the broken septic tank drainfield and a sick child…I think back to the “friend” (wow I have used a lot of quotes in this) that told me that I wasn’t as sweet as I used to be all the time and that these diseases have made me angry and I think well no fucking shit! Throw in some, or rather an entire childhood of abuse, shit family, and yeah, I don’t actually mind being angry. I more mind how I feel at this moment, which is utterly defeated. And the knowledge that all the therapy in the world won’t fix this. I have no fix to any of this. Not one thing! Which leaves me vulnerable, helpless, and very very alone.

A fox moved in next door

Tomorrow is my birthday.

My husband bought me a flower garden to plant. He was going to plant it tomorrow but planted it today instead since tomorrow it is 80% chance or rain. He wanted me to wake up and be able to look out and see the flowers anyway!

Plus he knew it’s been a hard few days.

I was bitten by a tick. I already have Lyme disease. A battle I’ve been fighting for 4 years now. This’s tick came with his own set of disease. Rocky mountain spotted fever. I’ve been really hurting the last few days. I tried to suck it up to enjoy our anniversary and our outings but the pain has gotten worse. After I found the tick and pulled him out my joints started to hurt, I got a rash, and just all over felt awful. This is the norm with a muscle disease and Lyme disease I am used to pain but this is worse. The ache in my hip where the tick was is unbearable. So,, after 4 years of treatment I am back on MORE treatment.

Thankfully my husband knew it’s just been a struggle of a few days and planted my garden. While he was planting I had a wonderful gift of a fox who I discovered moved in next door to the rock pile with her babies! I only got a quick glimpse but I hope to get some better pictures in the next few days. I can’t wait! Something to look forward to. I think we always need something to look forward to. Photos of a fox and her babies would definitely be a positive for me!!! Side note, she is not where I got the tick. She just moved in. It was from being in the woods. If I had a normal immune system it would hopefully not be this bad but mine is in the tank so… onward and upward. Here is this cute little fox. Ok another side note. We have gray foxes and we have red foxes. This fox has decided I think she wants to be a mix of both!!! I’ve had foxes in those rocks every year since we moved here and photographed them and never had one that’s front end was red and back end gray!!! I caught a glimpse of her babies too!

AND this is what rocky mountain spotted fever looks like. What it feels like is the flu and a thousand bugs biting me and my joints and muscles aching and my eyes swollen and hurting, swollen splotchy hands and body, red streaks and splotches all over my face and neck, but there are ofcourse photos. Education is always good!!!!

Plethora of symptoms

Last weekend it hurt to turn my head to the right. Eh probably just muscle disease stuff. Then for a week I had chills all night. Eh probably just the heavy metal toxicity. Then my ears started ringing and I felt weak. Eh probably a Lyme disease flare. Then I peed the bed. Eh just another lovely symptoms of a muscle disease. But now I have to wash the sheets with a weak body and a head that won’t turn. Eh just another day with a plethora of symptoms. This morning my shin and hip bones ached. Eh just another symptoms of the iron toxicity and fluctuation. Then my chest started to hurt on the left side. Eh probably just more of the same muscle disease painful muscles moving into the chest. Hard to breathe? Eh probably just that atrophy of the chest muscles that the pulmonologist documented. BUT then a little fear settled in. I HATE when that happens. When the “EH” turns into an “OH NO!” So I searched meningitis, and heart attack in women. I took an aspirin just incase. Then I decided that if I was going to die today I should take the garbage out and put the laundry in. I mean who would want to find me in a bed full of urine right? Maybe this is a seizure thing then…I have been disoriented and confused. Maybe I have a UTI? All things that I can do nothing about as I cannot drive to the Doctor and at this point I would not want anyone to drive me to one. I would get their fabric softener, car air freshener, and cologne seatbelt on me, get judged if I brought anything to cover those items, AND be exposed to the Flu.

After all of this I decided that If I could indeed sweep the floor and put my pee sheets in then I was not having a heart attack. This fear did absolutely nothing productive but trigger some PTSD and make things absolutely worse!

The fact is that I do have a degenerative muscle disease, a degenerative bone disease, and Lyme disease, and chemical sensitivities, and atrophy, and, well, a plethora of other health issues that cause a lot of symptoms.

Which is why I just try to be aware but not stay in the health fear moment too long.

Which is also why I went out this morning and took some pictures.

I am not discounting or minimizing my symptoms. My leg atrophy today feels as if I barely have a leg. It is very painful. Most of my muscles are painful and apparently bladder control is out. I also am having esophagus issues and swallowing problems. All part of this muscle disease that STILL has no definitive genetic mutation cause, just a name with no treatment or cure.

I just don’t know what will happen in my future. And you can say well no one does. But really most people kind of do. Whether it is going to a wedding, graduation, a job, dinner, a date, etc. There is SOMETHING in their future that they can count on, to plan for and to DO. Even tomorrow for me is truly an unknown.

For now, I live in this moment. This moment is filled with extreme pain. Emotional pain. Physical pain. Memory pain. It is also filled with pictures of moments of raindrops where I CHOSE to focus on that and that alone.