Medical issues and treatments

[Sprinkles]

Until I read information on here, I didn't know the trauma I endured correlated with medical issues.

Around 28 after having my youngest of three children, I started having physical problems.

First torn muscle fibers in both biceps. Then my right hip caused so much grief, I couldn't even jog/run anymore.

I did go to physical therapy and it helped some. When I hit my 30's I started having pain in my legs. Some days it felt impossible to even get out of bed.

Fast forward to age 32, I spent almost a year sick and couldn't get help with a diagnosis. I didn't have insurance at the time so my options were limited.

I was very thirsty and had to frequently use the washroom. I had a hard time eating and keeping food in my system.

I got to a point where I was dehydrated and nothing was staying in me. My boyfriend took me to the local E.R.

They did scans and it turned out I had a tumor on my pituitary gland. I learned the pituitary gland is what controls and regulates the body's hormones.

Due to this situation, I hit menopause at 33. I would later learn this was a precursor for the uncommon disease I would be diagnosed with 3 years later.

I have been on medication for over a decade so my brain can communicate with my kidneys.

I did manage to get insurance and started going to a clinic nearby since I required follow ups and refills.

I was in a tremendous amount of pain and having a hard time walking and used a cane.

I had a bad Dr. She assumed that since I was in my 30's that I was fine. That mental illness was why I walked with a cane and had physical issues. Even though I had a preexisting condition when I became her patient.

3 years later, I was returning home from seeing my children. A friend gave me a ride because my leg was bothering me. It felt like electric shock going through my left leg. It took me over and hour to get out of her car and struggle up the stairs. 

The pain became so great I couldn't move. My boyfriend came to the rescue again. He got me some food and had me take a nap and called an ambulance.

The day before Christmas Eve I was sitting on a hospital gurney crying. The worst part is I was going to miss Christmas with my children.

Scans were done and they found I had a large tumor that encompassed my pelvis. It caused severe damage to my hips and spine.

I was stuck in a hospital bed for three weeks. Undergoing lots of blood work and tests. The worse was probably a lung biopsy on new year's eve. The diagnosis was Langerhans Cell Histiocytosis. It's an uncommon autoimmune/blood disorder.

I also have a compromised immune system. My kids can't even have a sniffle when I visit. I'm in a wheelchair now.

All of this was very devastating. I felt like my whole life had shattered and I didn't know how to put it back together.

I had to do radiation and chemo. Through these times I experiences a lot of negativity from some of the nurses and transportation workers.

During one chemo session the nurse decided to put the IV in a small vein instead of the main one. So there was an infiltration incident which I had to endure 5 large needles of antidote.

This was the same day I had to get tattooed on my back to prepare for radiation.

I would later have to get a PICC line put in because of the damage from the infiltration incident.  Then eventually a port.

I was in therapy before these things occurred and was doing well. The trauma from all events mentioned made me much more sensitive and I felt the need to isolate myself.

Over the years I have taken hiatuses from treatments because it created a lot of hardship. The time has come where I need to resume Dr./hospital appts again and my anxiety is through the roof.

[Kizzie]

So sorry to hear about all the medical issues you dealt with and are dealing with Thunder   

I'm currently reading a book by Canadian physician Gabor Mate "When the Body Says No: The Cost of Hidden Stress" and he is quite adamant that mind and body are one, not split like medicine tends to treat us. He talks about a new field starting to gain momentum in medicine called "psychoneuroimuunoendocrinology" (seriously), which is all about a whole body response to stress. As he writes"That dauntingly complicated word means simply that this discipline studies the way that the psyche -- the mind and its content of emotions -- profoundly interacts with the body's nervous system and how both of them, in turn, form an essential link with our immune system."

I don't know if it's something you have the energy to ready right now but I just thought I'd mention it so you might take some hope that there are those in medicine who get that traumatic stress messes not only with us psychologically but physically, all systems are involved because there is not really a split between mind and body, there are in fact one.

I know your anxiety is through the roof but I hope this helps even a little bit.  It's daunting to deal with medical issues I know.  Part of what Dr. Mate (and others) suggest is that a lot of our physical problems result from repressing our emotions, which according to those in the field, causes some complicated imbalances in our systems and result in illness. Even if you can't locate a medical professional in this field, if you can go back to therapy it may help by getting your traumatic stress out.  If you can't face therapy you can always talk here.  It's safe, and members understand and are supportive which can help relieve some anxiety. 

[Sprinkles]

I understood some of that large phrase. I have to see an endocrinologist. 

It does help to know there is people out there discovering how deep survivors and others are affected and can create awareness and prevention through those means as well.


In my part of the world therapy is a waiting list. COVID increased anxieties and psychological stresses.

I do have the support of my primary Dr. I told him why I didn't want to go to hematology. So he told me just go and at least monitor my condition.

I had stopped going because some of the nurses have acted like I'm not worthy of their time.

During chemo (which I won't do and can't go through it anymore) there was a nurse who ignored my request and her actions caused me physical sickness. I reported her and I thought that would be addressed.

A couple weeks later, she was there again and did the same thing, and taunted me too. That's not a safe place and I have just shut down and avoided it. I'm not sure of the nurses name, A nicer nurse helped me with that.

So my Dr told me to find out who the bad nurse is and he will make sure she can't hurt me anymore.

I used to go alone, now my boyfriend will be coming for support and to give a sense of safety. Those factors do help that I won't feel vulnerable and alone.

I have felt better letting it out here. After I posted yesterday, I relaxed then did some dishes and cooked. I felt good while doing it had some headphones on and jamming to music.

I'm grateful that despite all I've been through. I have reached a place in life where I am happy for the most part.

 

[NarcKiddo]

Hello, Sprinkles.

I am sorry you are dealing with these health issues. I have read the book Kizzie refers to, and it spoke to me loud and clear. As did "The Body Keeps the Score" by Bessel van Der Kolk, which is also well worth a read.

I consider myself fortunate in that thus far I have not had to deal with anything particularly drastic health-wise. But I have some weird issues that make sense now I realise I have suffered emotional trauma.

I am horrified to hear about that bad nurse, and I hope you never have to see her again.

 

[dollyvee]

Hi Sprinkles,

I'm sorry it sounds like you've been through a lot. I've had issues on and off for the last 12 years and was consistently told that this was something in my head etc. I can relate and it's a hard thing to hear and go through. There's also a delicate interaction between mind/body IMO, think the effects of stress on the body, and it can be hard to separate which is which. I read something last year which said that "genetics load the gun, methylation turns off the safety, while environment, lifestyle and psychology pull the trigger." Lifestyle, chronic stress as a child, infections etc can cause cause inflammation which then can then start triggering epigenetic mutations and making them active.

I spent a lot of time researching symptoms etc as I was getting nowhere with doctors and was fortunate to be able to see a functional medicine practitioner who helped me trace the root cause of what I as experiencing. Even with that, it took time to go through everything and I have a strong defence system where it can be hard to hear/believe other people because I have had to stand up for myself and not be believed. I have a susceptibility to mold and mycotoxins and my body doesn't detox them without the help of a binder. They cause all sorts of problems like gut dysbiosis (which can then lead to food allergies and autoimmunity issues as the digestive tract becomes permeable), and also show up in psychological functions like anxiety and depression. Annie Hopper wrote a book called, "Wired for Healing: Remapping the Brain to Recover from Chronic and Mysterious Illnesses." Hope67 also posted about a trauma conference recently that included workshops on Functional Medicine and think it's something that's gaining traction.

I started taking binders about a year ago for mold/mycotoxins and was unable to lose weight after moving into a new flat at that time, even though while living at a different residence I could do it on a calorie restriction. After a year on binders, my weight has steadily dropped despite doing roughly the same exercise and eating the same foods. Taking binders, using a sauna, and microdosing were really the only things that changed. My weight is not totally a vanity issue, just the only outward thing that I could track other than feeling "off," or lacking energy, which could very easily be classed as depression etc. My GI told me the other week that doctors are always learning new things and was going to try taking binders himself. I don't want to make this about me but wanted to share my story as to not give up hope if you feel something isn't right. There are other avenues out there (with testing/science etc) and doctors can get it wrong too.

Sending you support to keep going through your medical procedures,
dolly