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Symptoms & Reactions

Symptoms & Reactions

Lupus and Lyme Disease?

Dear Diary,

Based on the advice of my naturopathic doctor/acupuncturist, who I go to for help with my nerve pain and numbness in my legs, I went ahead and got tested for Lyme disease.

Lyme disease is caused by the bite of a deer tick. Dr. F says that, sometimes, undiagnosed Lyme disease can be the cause of autoimmune diseases like rheumatoid arthritis, lupus, or multiple sclerosis. She’s even seen where these patients have gotten treated for Lyme disease with long-term antibiotics, which resulted in a complete remission of their autoimmune disease.

I had the blood test done on December 8th, and a little over one month later, I got the results. Positive for Borellia Burgdorferi, the bacteria responsible for Lyme disease! So, it would appear that I have both Lyme disease AND Lupus. But, I’m not so sure. I need to see a specialist.

Dr. F recommended two doctors who specialize in treating Lyme disease. They’re referred to all over the Internet as “Lyme-literate doctors.” One is in California and the other in Oregon. I plan to see both to get two opinions. These doctors specialize in treating complex cases of Lyme disease. The one doctor in Oregon has a waiting list until May; so I have to wait to see him. But the other one in California, I’m going to see in a few weeks. I’m SO nervous about what he’s going to say and do.

I’m still kind of in a state of shock about all this. I mean, it hasn’t been that long since I got the Lupus diagnosis. Everything seemed to fall into place and make sense with that diagnosis and the medicine I take for it, Plaquenil, has done wonders for my exhaustion and sense of well being. Getting used to Lupus hasn’t been easy, however; and truth be told, I’m still trying to get used to it. And, now to hear my naturopathic doctor/acupuncturist say that she suspects that my Lupus was possibly Lyme-induced, and maybe with the right treatment, I can be rid of both diseases once and for all—almost sounds too good to be true.

I wonder what my rheumatologist will have to say about all this….

Love,

Olivia

Symptoms & Reactions

Cysts, Myositis, and Tremors, Oh My!

Dear Diary,

I had to have an unexpected procedure at my gynecologist’s office on Wednesday. What I thought would be just a routine ultrasound to look at my on-again-off-again ovarian cyst, turned out to be an endometrial biopsy (a biopsy on the inside of my uterus). I wouldn’t wish this on my worst enemy. It was so painful, and the doctor didn’t use any anesthesia whatsoever. Then he told me that I would bleed for the next two weeks while the site heals…. This cyst was probably not related to Lupus. But, who knows.

The next mention of a cyst was during my routine rheumatology follow-up, when Dr. T showed me where I have begun to develop ganglion cysts on my thumb joints. According to Carol Eustic, Arthritis and Joint Conditions Expert at About.com, ganglion cysts are one of “three types of tendon disorders: tendinitis, tenosynovitis, and ganglion cyst. Tendinitis is inflammation of the tendon. Tenosynovitis is inflammation of the tendon sheath. A ganglion cyst is an accumulation of fluid within the tendon sheath.”

They feel like hard nodules that make my knuckles look a bit deformed and painful. They even make my nail beds lumpy from the way the cysts affect and distort the growth of my nails. I’ve always prided myself on having beautiful hands, but I’m afraid things are changing. I now officially have “old lady hands.” Hahaha! There are worse things to have happen with Lupus, but ick.

With ovarian cysts and now ganglion cysts, I also learned a new term that has been used to describe my muscle inflammation—myositis. Dr. T asked about my myalgia and myositis during this same visit. I knew what myalgia meant—muscle pain. With my puzzled look, she explained that myositis just meant the muscle inflammation that I’d been having. When I was finished with that appointment, I went back to some of my reports from orthopedists I’d seen. Sure enough, that word for muscle inflammation was mentioned several times along with myalgia. Apparently, myalgia and myositis are very common with Lupus patients. That was the first time it had ever been mentioned to me.

Our myositis discussion led to my questioning her about having tremors or shakes in my hands. I told her that ever since starting my watercolor class, I’ve noticed a marked increase in the shaking. It’s quite noticeable and embarrassing especially when I sit down to eat. Lifting my fork or drinking glass exaggerates the movements as my muscles struggle to keep things steady.

The tremors along with my headaches led my rheumatologist to give me a referral to a neurologist to rule out any brain involvement with the Lupus.

My acupuncturist had a different take on the tremors. Her thought was that I needed to be tested for Lyme disease, which she said, can be a mysterious root cause for a whole host of autoimmune disorders, apparently. We’re working with a very expensive specialty lab that’s known for accurately testing for Lyme. Hopefully, my insurance will cover most of the cost.

The cysts, the myositis, and the tremors. All part of a day in the life of a woman with Lupus. I’m just trying to remain as steady as I can along this rollercoaster ride….

Love,

Olivia

Symptoms & Reactions

“You’re Stable Now”

Dear Diary,

I’m happy to report that despite the Lupus, I’m able to accept and manage things much better these days.  As one of my doctors told me the other day, “You’re stable now. ” It took a while to get here after my trip back East.

With this new stability comes a sense of calm. I’m getting used to my new normal—using a wheelchair when needed; using a stool to sit on when I’m cooking in the kitchen; and using my laptop in bed when I can’t sit at the desk.

With the sense of calm, I decided it might be a good time to start looking for some creative outlet this month. I’ve always heard that expressing one’s creativity with art often helps the healing process, especially for those suffering chronic illnesses.

In the past, I’ve tried oil painting; but the fumes always triggered a pleuritic pain response. So, I discontinued that. Then, I decided to get back into photography. I had been published in a couple of major newspapers back East and I also won a photography contest sponsored by the Friends of Red Rock Canyon National Conservation Area. I had to discontinue that once the pain prevented me from climbing and walking to the areas where I could get the best “money shots,” as they call them. No self-respecting photographer takes photos from the car!

So, my choice of creative outlet this time is to take a watercolor painting class. There’s one offered at our neighborhood community center once a week. Just my speed. I dabbled in watercolor as a teenager. My Mom, God bless her, still has some of my paintings adorning her walls.

I’m hoping that I can sit through a three-hour class without too many repercussions. I anticipate that I’ll be getting up to fill cups with water or wash brushes out at the end of class. That shouldn’t be a problem if I position myself close to the sink.

Who knows what will happen. Either way, all I can do is try to do something that brings me joy.

Love,

Olivia

 

Symptoms & Reactions

Lupus and Spinal Stenosis

Dear Diary,

Today I found out why I have such awful nerve pain and numbness in my back and legs. It’s a condition called spinal stenosis, and we the story of how we discovered it follows:

During my regularly scheduled follow up with my internist (the one after the ER follow up debacle), she gave me a referral to a new orthopedist—one who believes in my philosophy of avoiding surgery at all costs. (Background: I don’t do well with surgery, usually having bleeding complications or a triggering Lupus flare.)

I met with the new orthopedist, Dr. T, last week. I informed her of my bilateral avascular necrosis in the femoral heads of my hips and the compressed discs in my back and neck. I also explained to her that suddenly within the last few weeks, I found that I was having more and more nerve pain in my legs after walking and that standing up for more than 10 minutes resulted in severe numbness in both my feet that worked its way up both legs. This was a new development.

After she examined me, she ordered an MRI of my lower back. She only ordered an x-ray of my hips, as if that were going to reveal anything. I think that x-rays are a complete waste of time. They rarely reveal much (as was the case with the negative chest x-ray when I was suffering with my pulmonary embolism), and the doctor always winds up doing an MRI or CT scan anyway.

So, today was my follow up with her after the MRI and x-ray. The report from the radiologist revealed severe spinal stenosis in my lower back and sacrum. No wonder I had numbness and pain!

Her go-to approach for this type of diagnosis is trigger point injections of painkillers and/or cortisone, just like I had at a previous orthopedist. I told her that back then, I found that the shots only caused more harm and no good. They hurt like crazy, and only added a different twist to my pain.

So, instead, she suggested that I try acupuncture. Hmmm. I’ve tried that before, but each time, it was just too weird and didn’t do much for me. But, given this situation, I am definitely willing to try again. I really think that I just didn’t have the right acupuncturist for me.

So, I left there with a prescription for acupuncture in hand. Kind of hopeful that ancient Chinese medicine would do me some good this time.

Love,

Olivia

 

Symptoms & Reactions

Paleo Diet for Lupus

Dear Diary,

A few weeks ago, I had really great news about my results with the Paleo diet. I finally dove into the books that a friend lent me last year, and I started applying what I learned. Within a week, I was feeling so much more energy and reduced symptoms of inflammation and pain. And as time went on, I just continued feeling better and better.

But…and there’s always a “but” — my INR fell dramatically. In order to exist at a level of lowered risk for blood clots, my INR has be somewhere between 2.0 and 3.0, the so-called therapeutic range.

Because I began filling my plate with greens and even some nuts, my INR was consistently closer to 1.0, which is way too low (too thick), and puts me at increased risk for more blood clots. So, my hematologist, who I just love, wasn’t too pleased with me. She gave me three options: 1) change meds from Coumadin to Xarelto, which doesn’t have to be monitored; 2) increase my dosage of Coumadin to compensate for the new diet; or 3) revert back to my pre-Paleo diet so that I didn’t have to change my meds or dosage.

She scared me so bad that I decided to reintroduce the grains (not the legumes) to get my INR back to therapeutic without making any adjustment in medication. Well, guess what happened–I’m sure you know. The pain and inflammation has returned with a vengeance. There is no doubt that eliminating all the items from the forbidden list of the Paleo diet is my best chance for feeling better. I’ve now decided to go to option 2–increasing my dosage of Coumadin. I really don’t want to do it, but the trade-off is worth it. I didn’t choose to change to Xarelto because there’s no antidote for it; so if I have to have emergency surgery (like I did with the appendicitis last year), there would not be a way to thicken my blood quickly.

During all this Paleo/Coumadin drama, we are in the process of moving again. We bought and closed on our new home on Jan. 17th, but we still haven’t moved in because of delays in remodeling and construction schedules. I won’t go as far as to say it’s a fixer-upper, but there are areas that I want remodeled for my own taste and safety.

So, between the latest with my health and the moving/remodeling that’s going on, things are a bit hectic. Hopefully, they won’t get even more chaotic. There’s a chance that I’ll have to have a hysterectomy because of a suspicious and fast-growing cyst on my right ovary. I’m scheduled to have a third ultrasound with my doctor on Wednesday. I’ll know for sure what the plan is at that time. The urgency about the surgery, from my doctor’s perspective, is that the cyst has doubled in size over a six-week period; and the fact that cancer runs in my immediate family—my father, who passed away from colon cancer and my sister, who’s battling breast cancer. Thankfully, today she had her last chemo session today for breast cancer. Yay! Now, it’s time for radiation.

Love,

Olivia

Symptoms & Reactions

Lupus Gets in Your Mouth, Ewww!

Dear Diary,

About a week ago, I prepared for what I thought was a routine follow-up with my doctor. Boy, was I wrong! I’ve been having some strange lesions in my mouth, specifically on my tongue. We first thought it to be oral thrush (yeast or candidiasis), like infants often get. So, when we first found out about a month ago, she treated me with a prescription anti-fungal mouthwash, and for the last few weeks, my tongue seemed to be getting better.

But, at this latest appointment, things were no better and in fact a bit worse. My doctor didn’t like what she saw, and she referred me to see a specialist for a biopsy of my tongue. She believes this latest problem to be another manifestation of Lupus. Apparently, it’s common to get painful mouth or tongue sores with this horrible disease. Geeze….

So, before I got in to see the otolaryngologist (the ear, nose, and throat guy), I decided to ask my dentist about it. Hubby had a routine appointment, and I asked if I could be seen as well. I tried my best not to look at his facial expression as he examined my tongue by pulling on it with a piece of gauze. Up and down, side to side, he lifted up my tongue to see every inch of it. Once he finished, he said he had no idea what it was, and suggested a biopsy as well. I told him I was already scheduled to see the otolaryngologist in about a week and a half. He said, “Good.”

I left there with a bottle of special mouthwash called Prevention Oncology Mouthwash, which is supposed to soothe oral tissues and help control sore gums, oral ulcers, and thrush. They also gave me samples of Biotene to help keep my mouth moist. It turns out that my sister uses both of these to help with the dry-mouth effects of chemotherapy. That’s all I need, another Lupus connection to cancer and chemotherapy.

So, finally today, I saw the otolaryngologist. I was fully prepared for him to say that in his expert opinion, it looked like I had cancer on my tongue. Instead, he looked at my tongue, pulled up his computer screen and told me it was something called “geographic tongue.” He pointed to a Wikipedia page that showed the grossest photos of tongues with the missing hairs and red sore areas—just like my tongue.

I was relieved, and I thought for sure, he’d have some remedy for me. Nope. He just said that it would go away on its own within about nine months. WHAT?! In the meantime, he said to avoid spicy, acidic foods and drinks.

That is all. Another wait and see, be patient scenario. I’m very grateful it’s not cancer, though. Very grateful.

Love,

Olivia

Symptoms & Reactions

Learning More About Lupus

Dear Diary:

I’ve been spending a good amount of time learning more about Lupus these days. I contacted my former psychotherapist in Las Vegas about the news of my Lupus diagnosis and requested a Skype session with her since I haven’t been able to find a therapist yet here in Reno. I’m having trouble trying not to overthink this–I’m vacillating back and forth between being relieved that I may finally have an answer for all the crazy health problems over my lifetime and fretting over what the new diagnosis is going to mean for my life.

The whole situation with these positive tests is trying my patience, too. Before anything can happen as far as treatment goes, I’m being sent to a rheumatologist here in Reno. Unfortunately, she’s so booked up that I can’t see her until December 20th—nearly three months from now! Apparently, that’s the norm when you’re referred to a good specialist.

Thankfully, she made time to meet with me over Skype. She told me that there is a tremendous amount of research showing that many people with a traumatic (emotionally, physically, or sexually) past, often develop autoimmune disorders as adults. Uncontrollable stress is a big variable, she said. Also, people growing up in inner city housing have high rates of autoimmune disorders and many environments are very toxic to us as children. Interesting psychological perspective. I’m not sure if I qualify for that, but I’ve been sick and stressed since I was a child.

During my Skype session, I realized that for the first time, I feel safe with my new doctors. So far, my new internist has been very attentive, taking the time to listen to all my problems. For that, I really like her. My physiatrist (pain doctor) listened to me about my hip and spine pain and took more x-rays. They both decided because my arthritis is even worse than before that I needed to be tested for autoimmune diseases. They said I was way too young to have the level of arthritis that I have.

No one in Washington, DC or Las Vegas ever said that. Apparently, it’s not an easy diagnosis to make, but given my blood tests, my history of pulmonary embolism, chronic pleuritic chest pain, bleeding issues, arthritis, etc. and my current overall physical condition, it should have been a no-brainer for them. I’m feeling so glad to have something to focus on and learning more about Lupus will be my focus for a long time to come.

Love,

Olivia