Inner Ramblings of a Chronic Illness Warrior

I have been feeling so lost this week. I have been really sick again which always throws my psyche off but I am completely second guessing myself on just about everything. Today I am going to be vulnerable and share the inner workings of my mind in hopes it helps you understand a different aspect of living with illness...

 

Do I commit more time and money to resistance stretching? On one hand I am afraid it is too much money to spend. On the other hand, if it works then it is totally worth it. But then again - it’s a lot of money to spend and I am trying to work less, not more. The fear of spending money during uncertain times arises and weighs on me a lot but I don’t think it is a completely “valid” fear. I am still bringing in a little money and I do have savings so I think I am safer than I feel. I can feel a difference after every session but at the same time it doesn’t feel like it has an epic overall effect. I have spent a little...

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Helpful Supplements While Using Disulfiram

 

This is a compilation of different supplements that can be helpful while using Disulfiram. I will try to keep it separated into different categories based on what issues you may be having but I have also included my top six supplements at the bottom.

I created an Amazon Shop that has all the supplements and the brands I recommend listed to create a quicker way to shop. I only used the brands that my doctor carries because I know they are superior and since this is an unregulated market, we need to be careful. I gave you options with the supplements offered in their pure version as listed on this page and some are combined. I combine where I can to keep the costs down.

You may see some supplements listed in multiple categories, this can also be a more economical way to choose your supplements. My acupuncturist has mentioned that taking so many supplements is stressful on our digestive system, so I try to cut down and only use what I specifically feel is helping. This...

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Disulfiram: Bath & Beauty

The largest organ in the body is the skin. I don't think very many people give this a lot of thought but it is a way we both absorb and release toxins so what we put on our body is just as important as what we put in our body. I have been using all natural bath and beauty products for about eight years and finally switched my medicine cabinet out about three years ago. Even though I have been using all-natural, organic products there are still several changes I have had to make since starting Disulfiram. I tend to err on the side of caution because my body is very sensitive and has adverse reactions to many different things but I'm also a rebel that likes to test my limits and experiment with just how strict I have to be!

When using Disulfiram you will need to start reading the labels on all of your bath and beauty products. You will want to read the labels on shampoo and conditioner, soap, shower gel, shaving products, moisturizers, facial skin care, bath products,...

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2019 in a Nutshell

At this moment, reflecting on 2019 does not bring a lot of joy. But it is important to remember those words "at this moment". I was able to see a client this morning but spent the rest of the day in bed too weak to function in any capacity. A year ago I felt healthier than I do today and I was still recovering from my hospitalization. At this point last year, my goal was to be as healthy as possible by summer 2019. My doctor told me to expect it to be at least a year before I would be back on my feet and he was very clear that he did not mean back to 100%.

I don't put a lot of faith or trust in doctors so I was determined to be back to work and living a full life by summer, and I was willing to try anything to get me there. I had already been suffering through Guillain Barre Syndrome for two years and the thought of another debilitating year was disappointing. I have spent the past year on a variety of supplements, three different IV therapies, herbal tinctures, Chinese...

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Life on Disulfiram: Food & Products to Avoid

This is a list of all the foods you should not eat while using Disulfiram and for two weeks following. I am going to break them down into separate categories with foods that cause Disulfiram interactions, foods that are high in copper, the high polyphenol foods and supplements that people have experienced issues with, and finish with the ingredients in cleaning and beauty products that you need to avoid.

I think it is important to mention that some people don't change their diet aside from alcohol and they seem to do okay. Every body is different and we all have a unique journey we are on so if you want to continue your normal routine and just eliminate foods as they bother you, that is one approach to take. I already felt like poo when I started this medication and just didn't want to risk anything making me feel even worse so I decided to make the whole lifestyle change.

When I first encountered all these food restrictions I was feeling pretty nervous. I was under the impression...

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Disulfiram for Lyme

When my doctor came back from the Lyme Conference and told me this medication was helping Lyme but most importantly Babesiosis, I felt like I had hope for the first time since I was diagnosed a year ago!

Most of the babesia research I have done shows that it is an incurable and deadly disease so there are moments where the struggle seems futile. Then chronic Lyme can also become extremely damaging and debilitating over time. I have read quite a few studies that have determined Alzheimer's is actually late stage Lyme. My future has been a bit scary to think about in regards to my health and aging.

He told me like most things in the Lyme world that the medication would make me feel worse before I feel better, but for a potential cure I was willing to sacrifice! Although I felt like I was finally managing the illness better, this definitely isn't the life I want to live. I felt fully confident I should take the risk and try it out.

 
 

Disulfiram, also known...

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In Sickness & In Health

When I was first hospitalized for Guillain Barre Syndrome I received immunoglobulin treatment for five days. At this point in time the paralyzation was mostly from the waist down and although I couldn't feel my arms, I could still move them. On the third treatment the entire right side of my body lost all feeling and movement from my head to my toes.
 
I had been in the hospital alone for six days and it was the first tear I shed. It was such a massively uncomfortable feeling that it really scared me and I was worried I was having a stroke. They rushed my doctor down and he felt it was unrelated but I asked him to stop the treatment. The doctor honored my request to pause the treatment and within the next hour I could move the right side of my face again and the intense loss of feeling had dissipated.
 
They started the treatment at a much slower rate and it didn't happen again. This was my first official hemiplegic migraine and I have had them ever...
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The Power of a Wellness Journal

 I created this wellness journal over a decade ago and just revised it last month to give it a few upgrades. I find this an incredible way to keep track of what is going on in my body, and my medical team really appreciates me bringing it with me to keep them fully informed. I first created it when I was having a health crisis and there were so many different things going on from day to day that I would forget to tell my acupuncturist certain symptoms and would only remember later in the day after the session was over. I realized I needed to start keeping better track and recording what was happening in order to have more productive doctors and acupuncture appointments.
 

I kept the design simple so if you are printing this out at home you won't use up all your ink! If you want it to be a little prettier, I would just recommend picking a color paper that makes you happy and print it out on that. There are ten main components the Wellness Journal...

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Illness Etiquette

What not to say to people with chronic illness! (Part Three)

This post is going to come from an emotionally charged head space because I am currently in the hospital and fighting my hardest just to get through the day. I am trying my best to stay positive and hopeful but I am also feeling as weak and depleted as can be. I have to say that my spirit is beginning to suffer in addition to my physical body. I am also severely frustrated with doctors not listening and the disconnects that happen. Simple things like it taking five hours to receive migraine medicine which means my migraine is going to go from a 3/10 to a 9/10 on the pain scale. Now that you know a little about what is going on, here is the text that got under my skin.


 
 

I was truly exhausted so when I got this text from my best friend I simply called her out on it. Like many people, she struggles with knowing what to do or say when I am in pain so I tend to have a filter with what I share. Also,...

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Suck It Up Buttercup!

Part Two of what not to say to people with chronic health problems!

I asked one of my clients with multiple health issues if she had anything contribute on this topic and she instantly responded: "Suck it up."

I am grateful I haven't heard this one myself! This one is pretty rude and inconsiderate. I mean our only option while in a health crisis is to suck it up so do we really need to hear it from others? I clearly remember one day last month I was in so much pain and had such a terrible week that I was begging my doctor to put me in a coma and just wake me up when I was better. The last thing I would have wanted my doctor to say is "suck it up" and I definitely wouldn't want to hear it from loved ones either. 

Let's see, what would be a better choice of three words. I would go with "I love you" or if that is too strong, "I care about you." Have some compassion. Speak from your heart. Listen with the intention of understanding not responding. Communicate your concerns or...

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