What I'm doing
I am a 41 year old woman living in the Milwaukee area. I'm a single mama of three teenagers, living with a set of autoimmune diseases that have very nearly incapacitated me. Lots of people say that they're sick and tired of being sick and tired. That's me to a T. I've followed the rules of western medicine and have gotten nothing but sicker. Well, I've had about enough of that. I'm done waiting for someone else to swoop in and offer me a way out of this trap. I'm rescuing myself, with the help of some tiny microscopic friends. This week, I'm starting helminth therapy, and I'm using this website as a means of tracking and sharing my progress. Feel free to follow along.
Where I've been...
It started in 2006, with a few days of intermittent fever, a swollen ankle and a little blush on my cheeks that wouldn't go away. The first few bouts of this didn't set off any alarms for me. I've always been a person who leaned toward the natural, and I just chalked these episodes up to viruses or fatigue or minor sprains. I was a homebirth midwife at the time, finishing up my apprenticeship and just about ready to launch my own practice. I was a single mom to three kids, 11, 9 and 7 years old. I was busy. I was extremely happy. And I was unbelievably strong.
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After a few episodes, I visited my family doctor who took one look at me and said, "I think you have Lupus. Let's run some lab work." Those two sentences have been repeated by every doctor I've seen since 2007, and there have been a small army of them. For whatever reason, even though I more than meet the qualifying criteria for a Lupus diagnosis, I have yet to receive one. The reason is that my blood work is almost completely normal, no matter how many times they run it. I have one laboratory marker for Lupus (a positive ANA), but it is also a marker for a bunch of other illnesses, and can also be a marker of nothing.
The period of time between the flares has gotten shorter, while the length of the flares has gotten longer. I just had one that lasted about 16 months. The remission period between it and the next one was about three weeks. |
The list of symptoms has grown into a ridiculous parade of complaints, some of which are so bizarre to sound like I'm making them up. They include:
- At different times, pain and swelling in either hip and my SI joint, left wrist, both hands, my left shoulder, my right hip, the bottom of my right foot, and always coming back to one ankle or another.
- Malar rash
- Heliotrope rash
- Pleurisy and costochondritis
- Numerous kidney infections
- Frequent shortness of breath
- Pain and weakness in my arms and legs
- Extreme photosensitivity (meaning no direct sunlight or fluorescent light)
- Cold urticaria (a histamine reaction to cool air) that can cause anaphylaxis
- Mouth ulcers and occasionally nose ulcers
- Reynaud’s syndrome in my hands and feet
- Unexplained weight gain during flares
- Swelling in my esophagus that has led to a chronically hoarse voice and restricted vocal range
- Scalp swelling and pain
- Irregular hair loss in my pubic area and a little bit of my head
- Allergy to alcohol
- Worsened seasonal allergies
I spent a week at Mayo, where they diagnosed me with Mixed Connective Tissue Disease, but all of my labs were still normal. MCTD means two or more overlapping autoimmune diseases. When I came home, my rheumatologist here told me that I did not have MCTD and refused to include it in my chart. I’ve also been seeing a dermatologist who believes that I may have another autoimmune illness called dermatomyositis, citing the pronounced heliotrope rash around my eyes during a flare, in addition to the malar rash I have all of the time. Of course, my labs don’t confirm that. At the very least, the derm believes the MCTD diagnosis, and is the prescribing doc for my meds.
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Another oddity...I am now on a disease modifying drug called Plaquenil, though no one seems to understand the mechanism by which it modifies any of the autoimmune diseases it's prescribed for. Interestingly, there was a period of several years while I was sick, but before I was on Plaquenil, where I became almost impervious to both hot and cold. I could easily go outside for long periods of time in the winter without a coat, never got warm in 100 degree weather, could handle extremely hot items in the oven, and frequently made myself ill by showering in water that was too hot. We jokingly called it my super power. About six months after I started Plaquenil, my temperature tolerance returned to normal. No one knows what this was about, but I can't help but feel that it was an important clue.
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Where I'm headed...
This picture of me was taken on a family vacation to Washington DC during a window when I was feeling really well. I weighed 20 pounds less than I do now. I was not photosensitive yet, and was able to be outside with only a low-level sunscreen. My face was clear, and I was able to walk through the city all day every day we were there. This is where I'm headed - back to this level of health and happiness. I miss this person, and feel like the body I'm stuck in now is absolutely not related to the spirit it houses. This picture represents freedom to me: freedom to use my body in the way it was designed to be used. I want to be outside again, plant a garden, go for long walks, play with little kids, dance all night. I want my life back - I want ME back.