Doctors & Hospitals

Living with Lupus means living with stops and starts, progress and setbacks — not with just your body, but also with you’re your mind and spirit. While Lupus patients like me get a lot of practice with the “three-steps-forward-two-steps-back” deal, it’s not always easy. It’s especially tough to reconcile reality with the days of the past, remembering what you were once capable of in life before the disease….

Body

One word to describe my Lupus body today:  Strained

Which habits and rituals did I practice to soothe my Lupus body?

• Ate a clean diet
• Breathed fresh air
• Stayed hydrated
• Protected delicate skin

More details about my physical symptoms:
Along with feeling stronger comes the natural next step of trying to do more. This week, my “more” was in the form of increased stretching of the painful muscles of my low back, hips, and pelvis. I thought I could take it, but unfortunately, I pulled or strained my groin muscles in the process, due to the lack of mobility in my arthritic spine and joints. As I write this, I’m at the end of day two of resting from any exercise—or as I like to say moving and stretching. There’s no pain like a groin muscle strain, and the only thing you can do is rest the muscle and allow it to heal on its own. Needless to say, I postponed the start of my aquatic therapy this week (not that I was too keen on going in the first place).

Mind

One word to describe my Lupus mind today: Acceptance

Which habits and rituals did I practice to strengthen my Lupus mind?

• Managed expectations
• Focused on the positive
• Managed stress response
• Managed time and energy

More details and thoughts about how I’m feeling emotionally today:
Living with Lupus, I’ve grown accustomed to lots of starts and stops, and progress and setbacks—you know, the three-steps-forward-two-step-back idea. Being accustomed to it doesn’t make it any easier to take, though. Some days, I get so frustrated with my body, especially when I consider how I used to be. Looking back to that time doesn’t help, and it certainly isn’t fair to the person I am today. Today’s reality is that progress is slow. Thankfully, my determination is stronger than ever. I have to channel my inner tortoise and remember that slow and steady wins the race!

Spirit

One word to describe my spirit today: Trusting

Which habits and rituals did I practice to nurture my Lupus spirit?

• Practiced loving myself
• Enjoyed sacred space
• Meditated, prayed, visualized

Thoughts about my spiritual connection and spiritual lessons learned today:
My Lupus spirit is focused on being patient and trusting that, although I can’t always see progress when I’m in the middle of a setback (or what seems to be a setback), progress is STILL being made. Trusting in the process is key, and so is knowing and remembering that today’s reality is really how I choose to perceive it: Is the proverbial glass half empty or half full?

Meals

Today my meals were:

• Breakfast: Banana Paleo muffin, scrambled egg, slice of bacon, orange juice
• Lunch: Crockpot shredded chicken breast, green salad with apple slices and walnuts
• Dinner: Grilled salmon, dill rice, peas
• Snacks: Gala apple with almond butter
• Water: 60 ounces

Thanks

At least one thing that I’m grateful for today:

• Peace of mind

**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)

Living with Lupus, I work with many doctors. From cardiologists and hematologists to orthopedists and rheumatologists, I see them on a regular basis, either quarterly or every other month. I also have one doctor who I see only annually—my ophthalmologist for my annual eye exam required by my long-term use of Plaquenil. What I expected from today’s visit was far from what happened, however…. **

Body

One word to describe my Lupus body today:  Beat

Which habits and rituals did I practice to soothe my Lupus body?

• Ate a clean diet
• Breathed fresh air
• Stayed hydrated
• Protected delicate skin
• Smiled and laughed

More details about my physical symptoms:
Today, I had my annual visit to the eye doctor for what I call the “make-sure-Plaquenil-isn’t-blinding-me” exam. Because Plaquenil has the potential to cause ocular toxicity, rare though it may be, we Plaquenil users must be screened for ocular side effects, that begin as vaguely as blurred vision but can end up causing irreversible blindness. The doctor visit is a little different than your average eye exam. In addition to the normal visual acuity and color blindness tests, I have to complete a “10-2” vision field test, where you sit in a dark room, having one eye covered in a pirate patch and a clicker in one hand, lean your head forward to gaze into a dome-like box. Once positioned properly, you’re told to stare into the center light; from there the test begins with lights popping up all over your field of vision within the box in variations from bright to faint, and you’re told to click every time you see a light. All the while keeping your stare straight-forward at the center light. Once you’re done with one eye, you have to repeat the test for the other. This test was never difficult before—a little strenuous, yes, but not difficult. But today, it was stressful, and I actually felt my heart react. I thought I was having another a-fib attack—OMG! The good news is after a few more tests, normal and Plaquenil-specific, my doctor gave my eyes a clean bill of health. No damaging Plaquenil effects. I’m glad this is only an annual event. After three hours in that office, I’m worn out….

Mind

One word to describe my Lupus mind today: Stunned

Which habits and rituals did I practice to strengthen my Lupus mind?

• Managed time and energy
• Focused on the positive
• Managed stress response
• Connected with doctor

More details and thoughts about how I’m feeling emotionally today:
I was taken aback by how difficult the eye tests were today. What I normally look forward to (because I love the doctor and her staff so much) felt like a blow to the stomach. I could feel my stress levels rising as I struggled to keep up with the visual field test and during the doctor’s exam afterwards. For some reason the bright lights shining directly into my retina triggered an adrenaline response. All I could think about was that there must something awful going on. I never experience this before. The only way I could get through it was to keep focused on talking and asking questions along the way while taking breaks, as needed. I’m sure my doctor and her staff thought I was a chatter-box today, but whatever…I was nervous. Thankfully, they were patient with me.

Spirit

One word to describe my spirit today: Grateful

Which habits and rituals did I practice to nurture my Lupus spirit?

• Enjoyed sacred space
• Meditated, prayed, visualized
• Embraced uncertainty

Thoughts about my spiritual connection and spiritual lessons learned today:
I have not been so eager to meditate as I was today after the eye exam. The minute I got home, before dinner or anything else, I went directly to my sacred space, and went for it. It seems a bit contradictory to rush to meditate, but I felt I had no choice with the anxiety and stress swirling around in my system. Strangely enough, when I closed my eyes, I could still see those darn flashing lights from the exam. Crazy! It took a bit longer than normal, but I was able to connect and calm myself, and I actually had a pleasant evening. Oh, the work it takes to manage this life with Lupus….

Meals

Today my meals were:

• Breakfast: Sausage, sweet potato, and apple casserole
• Lunch: Green salad topped with sliced grilled chicken breast
• Dinner: Homemade baked salmon, dill rice, green beans
• Snacks: Cashews
• Water: 51 ounces

Meals

At least one thing that I’m grateful for today:

• An amazing ophthalmologist
• Ability to meditate

**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)

Just when you think you’re going to have a quiet weekend taking care of your Lupus body, mind, and spirit, your body has other ideas. This time, my heart decided it wanted all the attention—so much so that it required a two-day hospital stay that I’m still recovering from…. **

Body

One word to describe my Lupus body today:  Recovering

Which habits and rituals did I practice to soothe my Lupus body?

• Slept well
• Breathed fresh air
• Protected delicate skin
• Smiled and laughed

More details about my physical symptoms:
Two days after my release from the hospital, I still feel like I took a boxer’s blow to the chest. I’m still recovering from a sudden, acute attack of atrial fibrillation (also known as a-fib) of my heart. It happened on Saturday evening right after a massage. After the massage was done, I got up, got dressed, and took a drink of cold water. With only one swallow, rapid-fire palpitations started and they just wouldn’t stop. Hubby took me to the ER, where they told me that I was in atrial fibrillation, with a pulse rate of 180 beats per minute, and electrolytes were out of balance. I was admitted to the hospital and given potassium and magnesium as well as one other drug that didn’t work (sorry I can’t remember the name). Afterwards, they gave me an IV with the drug amiodarone, which according to the National Library of Medicine “treats life-threatening heart rhythm problems (arrhythmias) in patients who have already taken other antiarrhythmic medicines.” Thankfully, it worked and my heart “converted” back to a normal rhythm after about 12 hours on that drug. I’m still very bruised from the Lovenox (blood thinner) shots, the two separate IVs, and multiple visits from the phlebotomists drawing blood at my bedside. They tested for indications of blood clots and heart damage. Thankfully, the tests came back negative. No doubt because I’m already on life-long Coumadin (another blood thinner taken by mouth), which gave me a bit of built-in protection. The jury’s out about what caused this episode. My cardiologist believes it was a vagal reaction to the massage. This is normally very unlikely, but based on a Health Day article on U.S. News and World Report Health’s website, people with Lupus and Rheumatoid Arthritis are 60 percent more likely to experience atrial fibrillation. The article, entitled “Lupus, Rheumatoid Arthritis May Raise Risk of Abnormal Heart Rhythm,” cites a study at the University of Arkansas for Medical Sciences in 2011.

Mind

One word to describe my Lupus mind today: Frightened

Which habits and rituals did I practice to strengthen my Lupus mind?

• Managed stress response
• Focused on the positive
• Connected with doctor
• Asked for and accepted help

More details and thoughts about how I’m feeling emotionally today:
While I was a cool cucumber during the emergency (mainly because it was counter-productive not to be), I am feeling extremely shaken and frightened by the whole experience now that it’s over. It’s hard to believe that I’ve gone through yet another hospital admission, lying in bed, wondering if I did something wrong to make this happen; wondering if Lupus decided to go for my heart this time; and wondering if it’s going to happen again. Mentally processing this latest episode will take some time…. *sigh*

Spirit

One word to describe my spirit today: Thankful

Which habits and rituals did I practice to nurture my Lupus spirit?

• Enjoyed sacred space
• Meditated, prayed, visualized
• Embraced uncertainty

Thoughts about my spiritual connection and spiritual lessons learned today:
Despite the heart drama of this weekend, my doctor cleared me to travel for Thanksgiving. So, we drove to Mom’s house in Las Vegas as planned for Thanksgiving. I’m so very grateful that I was released from the hospital and allowed to make this trip. As I write this, I’m lying in bed in Mom’s guest room, which is filled with my childhood art and family photos—a sacred space for sure. The calm of Mom’s house is just what the doctor ordered after my most recent medical ordeal. Happy Thanksgiving!

Meals

Today my meals were:

• Breakfast: Paleo banana muffin, Gala apple
• Lunch: Egg and sausage sandwich on gluten-free bread
• Dinner: Roasted chicken breast, asparagus, fingerling potatoes
• Snacks: Gluten-free pretzels
• Water: 40 ounces of water (This is far below my target, but I’m fearful to overdo it and mess up my electrolytes after the a-fib episode. I’ll add electrolytes and work my way back up to 64 ounces.)

Thanks

At least one thing that I’m grateful for today:

• For being at Mom’s house for Thanksgiving
• For getting better after my a-fib episode

**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)

When I was diagnosed with Lupus, I had no idea of some of the types of medical tests I’d be faced with. I assumed there would be many trips to the lab for blood work, and maybe a few CT scans of my chest (due to weakened lungs from my pulmonary embolism). But, I never thought I would be facing tests on my brain, like today’s cerebral vascular ultrasound….  **

Body

One word to describe my Lupus body today:  Shaky

Which habits and rituals did I practice to soothe my Lupus body?

• Breathed Fresh Air
• Smiled and Laughed
• Moved and Stretched
• Stayed Hydrated

More details about my physical symptoms:
After not sleeping much last night, I woke up exhausted and facing the cerebral vascular ultrasound (of my brain). This is the follow-up test that the new neurologist scheduled after our first appointment two weeks ago. The combination of fatigue and nervousness as well as the essential tremor led to a bit of uncontrollable physical shakiness. So strange. Thankfully, we scheduled the drive to the beach right after the appointment. That definitely helped to relax me and take the edge off the shakiness.

Mind

One word to describe my Lupus mind today: Overwhelmed

Which habits and rituals did I practice to strengthen my Lupus mind?

• Connected with my Doctor
• Learned about Lupus
• Focused on the Positive

More details and thoughts about how I’m feeling emotionally today:
I woke up feeling incredibly overwhelmed about what I was facing today: my brain ultrasound and our trip to the California coast. First, the ultrasound scared me because it was an unknown. I knew that he goal was to find out if there were any active areas of blockage or clots by measuring the flow of blood in my brain. (My brain MRI indicated that there could have been vascular damage, which is common in Lupus patients.) But what I didn’t know was: How do they actually do the test? Would I have to take off my wig? Would they get that gel all over my head? What if they find that Lupus has now affected my brain? All these questions bombarded my thoughts. Second, I worried about how I would be feeling once the test was over. We planned to go the coast of California–first, staying overnight at a nice resort in the sand dunes of Marina, CA; then onto our ultimate destination of Santa Barbara, CA for a few days. I didn’t want to feel so bad that I ruined the whole trip.

Well, the cerebral vascular ultrasound turned out not to be as scary as I had imagined. It was strange though. The test took about an hour and a half, and like all ultrasounds, involved the gel and a machine. He put gel on my temples, my eyelids, and the base of my head. I listened to the blood flow, which sounds like the ultrasounds of your baby’s heartbeat when you’re pregnant. Just not as fast. Anyway, as he finished up, he said I did well and that the Coumadin that I take to prevent another pulmonary embolism was likely helping to keep blockages away in my brain as well.  He also explained that the white matter changes on my MRI were likely caused by previous mini-strokes. What?! It just came out of his in a mouth matter-of-fact fashion. What?! I was stunned, but quickly let it go…. I just focused on the fact that at least I didn’t have to take off my wig!

Spirit

One word to describe my spirit today: Acceptance

Which habits and rituals did I practice to nurture my Lupus spirit?

• Meditated, Prayed, Visualized
• Embraced Uncertainty
• Enjoyed Sacred Space

Thoughts about my spiritual connection and spiritual lessons learned today:
Once we arrived at the beach, it was easier to accept all that happened earlier in the day. After dinner, we sat outside at the bonfire that he resort sets up every night on the beach. The meditative sounds of the waves and the warmth of the fire washed and melted away all the fearful thoughts of the unknown–past, present, and future.

Meals

Today my meals were:

• Breakfast: Fresh omelet with tomatoes, mushrooms, avocado, potatoes
• Lunch: None
• Dinner: Terrible “homemade” chicken soup at the beach resort.
• Snacks: Hot peach herbal tea

Thanks

At least one thing that I’m grateful for today:

• Bonfire on the beach

**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)

This week, I’m still playing the Lupus waiting game. This time, my rheumatologist, after seeing the biopsy stitches in my thigh from a few days ago, sent me urgently to the lab for blood tests to rule out urticarial vasculitis. So, now I have two doctors suspecting this complication. I sure hope they’re wrong. In the meantime, I have to wait for the results. More waiting. Again….  **

Body

One word to describe my Lupus body today:  Tired

Which habits and rituals did I practice to soothe my Lupus body?

• Ate a clean diet
• Breathed fresh air
• Stayed hydrated
• Protected delicate skin

More details about my physical symptoms:
My three-month follow up with my rheumatologist was this morning. I was still broken out with the hives, and I still had stitches in my thigh from the biopsy. When Dr. T saw my skin—the bruising, itchy hives and the sutures—she immediately sent me to the lab for blood work to test for urticarial vasculitis. The tests she ordered were for cyroglobulin, complements 3 and 4, and the Anti-DNA ds. In pain, itchy, and exhausted, I had to go the lab after my appointment with her. I’m physically tired of all this.

Mind

One word to describe my Lupus mind today: Anticipation

Which habits and rituals did I practice to strengthen my Lupus mind?

• Managed expectations
• Connected with my doctor
• Learned about Lupus

More details and thoughts about how I’m feeling emotionally today:
Already waiting for results from the biopsy, I’m now going to have to wait for the results from today’s lab work. Both the biopsy and these special blood tests apparently take a long time to process. So, I feel like I’m going to jump out of my skin because I’m so hyper about it all. Waiting is the worst.

Spirit

One word to describe my spirit today: Allowing

Which habits and rituals did I practice to nurture my Lupus spirit?

• Embraced uncertainty

Thoughts about my spiritual connection and spiritual lessons learned today:
If there’s one thing I’ve learned about my spiritual side, it’s that sometimes you just can’t force things. You must allow life to happen. We perfectionistic, control freaks have this tendency to think we can affect all the outcomes in our lives—be it through our actions or our influence. With this Lupus, I have gotten the message loud and clear that forcing doesn’t work. Like today, there’s nothing I’d like more than to force the doctors and the lab to get my results to me sooner. Instead, I’m forced to allow this to play out in its own time and in its own way. I’m learning to be okay with that.

Meals

Today my meals were:

• Breakfast: Wheat-free, gluten free waffle, applesauce
• Lunch: Leftover homemade chicken soup
• Dinner: Broiled salmon, dill rice, broccoli
• Snacks: Gala apple slices, almond butter

Thanks

At least one thing that I’m grateful for today:

• My bed

**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)

I have suffered with autoimmune hives for many years. Before my Lupus diagnosis, the doctors called it chronic idiopathic hives or urticaria. Once the doctors learned that I have Lupus, they revisited the hives and began calling them autoimmune hives. No one ever took a look at them (other than seeing my photos) because the eruptions were so few and far between, and, of course, they never appeared while I was at the doctor’s office. But over the week or so, the hives have been so pronounced—huge, red, and itchy in the first two days, then bruise-like by the third or fourth day—that my dermatologist decided to take action. **

Body

One word to describe my Lupus body today:  Biopsy

Which habits and rituals did I practice to soothe my Lupus body?

• Ate a clean diet
• Breathed fresh air
• Stayed hydrated
• Protected delicate skin

More details about my physical symptoms:
Ever since my Lupus diagnosis a few years ago, I’ve continued having small breakouts of autoimmune hives; but, nothing like I’m going through now. So, I have been seeing a dermatologist about the hives, the hair loss, and the sun rashes related to Lupus. He told me that the nature of my hives—long-lasting and bruising—could mean something more serious than a histamine reaction. It could be urticarial vasculitis, an inflammation of the blood vessels of my skin. The only way to diagnose urticarial vasculitis is through a biopsy. So, he was able to squeeze me into the schedule today to get one of these notorious hives biopsied. Three punches of skin from my inner thigh are being sent to the UCSF lab for testing and diagnosis.

Mind

One word to describe my Lupus mind today: Nervous

Which habits and rituals did I practice to strengthen my Lupus mind?

• Asked for and accepted help
• Connected with my doctor
• Managed stress response

More details and thoughts about how I’m feeling emotionally today:
After all these years of wondering whether my hives are vasculitis, I’m finally going to get an answer, maybe. If it is vasculitis, I will have to start taking stronger immuno-suppresants and steroids in order to prevent the condition from spreading to my organs. That thought terrifies me. I hate taking so many medications as it is. I’m so nervous about this, and I have to wait two weeks before getting the results. Meanwhile, I’m taking a double dose of Zyrtec, which sends me to la-la land. I guess being a little sedated at this point might be a good thing.

Spirit

One word to describe my spirit today: Outcomes

Which habits and rituals did I practice to nurture my Lupus spirit?

• Enjoyed sacred space
• Meditated, prayed, visualized

Thoughts about my spiritual connection and spiritual lessons learned today:
Now that the sedating Zyrtec has helped the itching stop, it felt a little easier to meditate. I just focused on getting the most positive outcome from the biopsy. I began to feel a sense of hope and gratitude for finally getting a biopsy after all this time.

Meals

Today my meals were:

• Breakfast: Apple and gluten-free oatmeal
• Lunch: Roast turkey lettuce wrap
• Dinner: Grilled pork chop, sweet potato, broccoli
• Snacks: None

Thanks

At least one thing that I’m grateful for today:

• A patient, understanding, and knowledgeable dermatologist.

**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)

The Lupus vs. Lyme disease saga continues, but at least today I feel like I’m taking a few steps closer to getting some answers to whether or not I have Lyme. It’s been several months of opposing opinions from doctors and total confusion for me. **

Body

One word to describe my Lupus body today:  Pain

Which habits and rituals did I practice to soothe my Lupus body?

• Ate a clean diet
• Stayed hydrated
• Breathed fresh air
• Smiled and laughed

More details about my physical symptoms:
I was feeling extra pain today as I had to maneuver my way to a new doctor’s office. I finally got to see the infectious disease doctor about the positive Lyme tests I had back in January and February. (More about that below, in the More section.) The office building has a great outdoor handicapped parking lot that is close to the building, but it was full when I arrived. So, I had to park indoors and make the long trek from the car to the building, and down a few corridors in the building to the elevator that took me up to the office on the seventh floor. By the time I arrived I was in throbbing pain everywhere, my chest, back, hips, legs, neck. Not the best frame of mind to meet with a new doctor for the first time.

Mind

One word to describe my Lupus mind today: Patience

Which habits and rituals did I practice to strengthen my Lupus mind?

• Focus on the Positive
• Managed Stress Response

More details and thoughts about how I’m feeling emotionally today:
I’m feeling like I’m in good hands with the new infectious disease doctor, but having to wait for answers about the Lyme disease has tested my patience. Sure, it’s not as long as it has been, but it’s still more time without knowing. On the other hand, I’m grateful for getting in to finally see a really good doctor.

Spirit

One word to describe my spirit today: Still

Which habits and rituals did I practice to nurture my Lupus spirit?

• Enjoyed Sacred Space

Thoughts about my spiritual connection and spiritual lessons learned today:
I decided to return home today after my doctor appointment, and just be still. I needed to get a higher perspective on the whole situation, but I was just so drained. So, into my sacred space I went. Just to sit and not do anything. No meditating, no visualization—just quiet, subconscious prayer without words. It actually helped.

Meals

Today my meals were:

• Breakfast: Gluten-free oatmeal with cinnamon and raisins
• Lunch: Tuna salad sandwich on gluten-free bread
• Dinner: Grilled red snapper, French fries, salad
• Snacks: None

Thanks

At least one thing that I’m grateful for today:

• Meeting the new infectious disease doctor.
• The ability to understand and converse using technical, medical terminology.

More

After putting it out of my mind for several months while I waited for a second opinion, today I finally saw an infectious disease doctor about my positive Lyme disease tests. (Here’s the backstory of my history with Lyme disease: Lupus and Lyme Disease, A Different Perspective on Lupus and Lyme Disease, Two More Opinions About Lyme Disease, and A Change in Approach.) I arrived a bit nervous, but with an open mind, despite all the negative press given to infectious disease specialist when it comes to Lyme disease. So the doctor was kind and competent, and based on my research, well respected. She looked over my records, asked a lot of questions, and listed to me as I answered. Very important to me. She said she was suspicious of positive Lyme tests in Lupus patients. She said there can be come cross-reactivity where the Lupus antibodies cause a positive result in the lab. She said the most reliable test for Lyme in her opinion is the Western blot test, and she preferred to send me to a “regular” lab instead of the independent Igenex Lab. So, she sent me on my way with a lab slip, and a follow up appointment in about a month.

**(This post is based on the format of the Lupus Diary that I developed for keeping track of how Lupus affects my body, mind, and spirit, I check-in here once a week to let you know about the more interesting days of my Lupus journey. To learn more about the Lupus Diary, how I developed it, and why I use it, click here.)

Dear Diary,

It’s amazing the reactions of doctors when they hear that you’ve gotten positive blood test results for Lyme disease and two co-infections. Today, I had appointments with my rheumatologist and allergist, and both of them had something to say.

As a Lupus patient, Dr. T, my rheumatologist monitors my condition and prescribes the necessary medications to keep the Lupus flares at bay. Right now, she’s prescribed Plaquenil and Lyrica, and she has ordered weekly sessions of physical therapy and acupuncture. I’ve been working with Dr. T since December 2012.

My appointment with her today was a routine follow-up, eight weeks after my last one with her. Before we could discuss the usual things, like my lab results, she asked how the Lyme disease tests were going. I have been keeping her informed of everything.

I showed her the paperwork from IGenex Labs showing that I tested positive for the co-infections of Babesia protozoa and Bartonella bacteria, also known as cat scratch disease. She reviewed the test results and the actual values for IGM and IGG. IGM antibodies indicate a recent active infection, and IGG antibodies indicate an historic or chronic infection that the body has been fighting for a while.

With the Babesia, my IGM antibodies were positive, and my IGG antibodies were negative. With the Bartonella, my IGM antibodies were negative and my IGG antibodies were positive. The results were puzzling to her because I show no specific symptoms for either.

She even questioned the decision to have me tested for any of these in the first place. She said she would never have ordered the tests at all.

I told her that, based on her reaction and the reactions of my pulmonologist and hematologist last week, I feel like I’m caught in the middle of a tug of war between the two sides of the Lyme disease debate.

She apologized for what I’m going through, comparing it to her patients who fell victim to the whole “fungal infections” craze. She agreed with getting a second opinion with an infectious disease doctor, as my hematologist recommended.

Once I left the rheumatologist, I was off to see the allergist, who I hadn’t had to see in about a year. So, again, the appointment began with a breathing test to check for my lung function. I passed with flying colors, so he agreed that I could stop taking the Singulair. He was happy to hear that the Plaquenil was doing its job for the Lupus.

When I asked his opinion about my test results for Lyme disease and its co-infections, he gave me an interesting perspective. He reminded me that he was, for many years, a physician in the Air Force. During his years working all over the world, he treated many cases of Lyme disease. He said he even administered the Lyme disease vaccine before it was pulled off the market. That was a long time ago.

So, he said, he believes that Lyme disease exists, and that Lyme disease can cause immediate as well as long-term problems.

The problem now though, he said, is that patients are tested after having only very vague symptoms with no recollection or knowledge of a tick bite. The symptoms could be one of many possible disease processes, and those should be ruled out FIRST before going for the Lyme disease test. Besides, many people carry antibodies for diseases they never knew they had. Their bodies took care of it.

He gave the example of asking 100 high school students if they had mono. Eight or nine would them would raise their hands. But if you blood tested every one of the 100 students for mono, you would have very different results. About 80 percent of them would test positive for having mono antibodies even though they never knew they had the disease.

That’s how he sees the Lyme disease and co-infection debate. As with every disease, it’s always best to get two opinions if at all possible. In this case, he recommends getting the opinion from the other side of the Lyme disease aisle. The Lyme doctor, Dr. M, represents the ILADS perspective, and an infectious disease doctor represents the IDSA perspective.

So another vote for a second opinion. That makes four.

My allergist did say that if the infectious disease doctor agreed with the Lyme doctor in California, he didn’t see any problem combining the drugs that I currently take for Lupus with the treatment for Lyme disease. He’s had plenty of experience with treating patients with Lyme disease and other serious illnesses. That was good to know. Just in case.

What a day. I’m exhausted.

Love,

Olivia

Dear Diary,

Well, today is Good Friday, and Hubby had the day off from work. It was SO nice to spend quiet time with him. We slept late, and he joined me in lounging all day in our pajamas.

I can feel the difference that getting a lot of rest makes. I have been at home pretty much all week after my two doctor appointments on Monday. So, I have accumulated four days of doing nothing and going no where. It’s hard to describe the difference in pain level and the renewed sense of energy that comes with resting like this.

The only thing Hubby did today was walk to get the mail, and for the second day in a row, the stack of envelopes included lab test results. Yesterday, the results were my routine tests that my rheumatologist orders as part of her monitoring my Lupus and Plaquenil. Today’s test results were from the neurologist’s order. That’s when the lab took all those vials of blood last week.  All I thought she ordered was a test of my creatinine required to make sure my kidney function was normal prior to the brain MRI with contrast.

But, I see that she ordered much more than that. She had me tested again for Lupus, and the results of my anti-nuclear antibodies (ANA) and Anti-ds DNA antibodies were both abnormal, as expected. The Lupus hasn’t gone anywhere.

She also tested my thyroid function, vitamin B6, and repeated the test of my vitamin B12 levels (because it was so high when the Lyme doctor tested it). But the bulk of the report showed that she also ordered tests that I’d never even heard of before, including a heavy metals profile that tested for lead, arsenic, mercury, and cadmium; and a serum protein electrophoresis with the results given in numbers and plotted on a graph.

Thankfully, nothing seemed out of the ordinary or indicative of any disease process as far as I can tell. I will know more when I follow up with her after the brain MRI.

In the meantime, I’m putting all this medical stuff out of my head and enjoying my quiet time with Hubby.

How’s that?

Love,

Olivia

Dear Diary,

After spending a quiet, restful weekend with my Hubby, I spent this glorious Monday morning feeling a sense of acceptance and a clear perspective about my situation. It felt good to be planning my nutritional strategy for getting better and helping the medicines along. More juicing, fewer carbs, no added salt, and no sugar. I also spent time meditating on the healing of my body.

Unfortunately, my calm morning let to an afternoon of more unexpected uncertainty, just as I was beginning to feel that I understood and had the correct perspective on what to do about the Lupus and Lyme disease with its co-infections.

Let me first say that the two doctors I saw this afternoon are among my favorites—my pulmonologist and my hematologist. My first appointment was with Dr. S my pulmonologist, a very caring doctor, and I don’t ever doubt that she wants what is best for me. I arrived at her office expecting a breathing test and a discussion about why I chose to stop taking Singulair. Things went as expected, I received good news about my breathing test, and she agreed that I didn’t have to go back on the Singular.

The unexpected part was when I brought up the positive tests for Lyme disease and its co-infections. I asked her if she thought any of my pulmonary issues could be attributed to that, in addition to the Lupus. Also, I wanted to know if she’d had any experience with the Lyme disease issue.

Well, like a light switch going from on to off, her demeanor changed drastically. She said the whole Lyme disease debate was so controversial and that I had to be very careful in deciding what to do next. She emphasized that it was important to consider ALL my options to gain the correct perspective, weighing the risks versus the benefits of taking strong drugs for several months, given my delicate situation. She never did address whether she’d had experience with Lyme disease or not. I left there feeling a bit empty and confused; but thankful that she was so honest with me.

After meeting with Dr. S, I took the elevator to the fourth floor to meet with Dr. V, my hematologist. A little bit younger than Dr. S, she reminds me of a caring, nerdy whiz kid with glasses and all, sharp as a tack and feisty like me. She’s also an oncologist (as are most hematologists), so she always shows concern about the cancer that runs in my family. My father died of colon cancer, and my sister survived breast cancer. This visit was no different when she asked about my most recent mammogram. Thankfully, I remembered to bring a copy of the results letter with me. Benign.

I was also prepared to discuss the results of the comparison of my at-home INR test results with the results from the lab. I test my INR weekly to make sure I stay within the therapeutic range. This is necessary because I have been taking Coumadin since having a pulmonary embolism seven years ago.

Anyway, the makers of my INR testing machine sent a scary letter saying that the machine might not be calibrated properly, and that if you suffer from an autoimmune illness (or various other vascular conditions) you should get a comparative reading from a lab to be sure that your machine was okay. So I went to the lab for the INR test on my normal testing day, and the minute I got home, I tested myself with the machine.

As it turns out, the reading from the lab was 2.1 and my reading was 2.3. No big deal, Dr. V said. For further reassurance, she said that the machine’s readings would always be verified should we have to make any major decisions about my health.

Okay, that was good news. Mammogram; check. INR test validation; check. Next up, the Lyme disease and co-infection discussion item. So many questions I had for her. Did she get the fax from Dr. M? How would the Coumadin interact with the Mepron and Zithromax? What were her thoughts on Lyme disease?

She paused and pondered for a minute, then looked at me and asked what kind of doctor was Dr. M. I told her that he was a board-certified family practitioner, who was also certified by the ILADS to treat Lyme disease. She asked if he was an infectious disease doctor. I said no. She immediately said that I should get a second opinion about the diagnostic tests and Dr. M’s treatment plan.

The concern on her face was scary as she said that she didn’t want me to lose any of the progress I’ve made since she started treating me. The fact that I’m stable and able to do more (even though it doesn’t feel like it to me) shouldn’t be overlooked or taken for granted. The Zithromax and Mepron, which she referred to by its generic name, are VERY strong drugs, and who knows what kind of affect they would have on me or what kind of interactions there would be with the Plaquenil and the Coumadin.

As she reminded me about my sensitivity to all changes in medications (and foods for that matter), I couldn’t help but think of what a catch-22 it was to know that the drugs that could potentially help me might cause permanent damage to major organs. Risk versus benefits again.

She even speculated that the doctor was probably operating on a cash basis and didn’t take health insurance. She was right about that. Dr. M opted out of Medicare about a year ago. She said she wasn’t trying to knock him, but that’s just one of many red flags of doctors who operate outside of the established norms and acceptable parameters.

Sigh.

At the end of our discussion, Dr. V took the action of officially referring me to an infectious disease specialist—someone she personally knows and trusts. She wants his opinion before answering any of my questions about Lyme disease, its co-infections, or the possible problematic interactions of Coumadin with planned treatment drugs for Lyme-related infections.

Well, I certainly didn’t expect such intense responses from my trusted doctors. But, because I trust them, I have to consider their thoughts and opinions. Boy, how my perspective changed from this morning until now.

Deep breaths. That’s all I can do after the two doctor appointments I had this afternoon.

Love,

Olivia

Dear Diary,

I had my first neurology appointment, a long overdue referral that my rheumatologist sent over back in November. At that time, I had just begun having strange headaches and very noticeable tremors in both hands. It was so noticeable that when I eat or pick something up, my hands shake for the whole world to see.

From what I gathered as I sat in the waiting area filling out paperwork, there had been a bit of a mix up within this medical group. So, the four-month delay in getting an appointment was due to the fact that they had no neurologist to see me.

Once I was called in to see her, my new neurologist introduced herself as Dr. M. It turns out that Dr. M is from my original neck of the woods, the DC/Maryland area. She did her residency at Georgetown University Medical School, then moved her practice to my next neck of the woods, Las Vegas, NV. Now, in Reno, she’s establishing the neurology practice within this new medical group.

After her introduction, she proceeded to thoroughly examine me and ask a zillion questions about my strange new headaches, my nerve pain in my back and legs, the numbness in my feet and legs, my tremors, and a bunch of other things.

She reviewed my medical records in great detail, and even asked for more as she identified areas that needed clarification. I knew she was paying attention to every detail, and that gave me great comfort.

She turned out the lights and looked into my eyes with a lighted instrument. She led me to the hallway, asking me to walk without my cane so that she could observe my gait. She had me take off my shoes and socks. Then, she took a safety pin to see if it hurt when she pricked my skin with it. Starting at my feet and working her way up my legs.

It was scary to see how I couldn’t feel much pricking at all until she was well up my shin. I had no idea things had gotten that bad.

Once all the poking and prodding was done, she gave me her thoughts about what could be going on.

Definitely, the Lupus and/or the Lyme disease was affecting me neurologically when it came to the symptoms related to my back, legs, and feet. She said it was most likely something called peripheral neuropathy. The only way to know that for sure was to complete a nerve conduction study. I referred her to the tests that Dr. T, the orthopedist had conducted. For some reason, darn it, I didn’t have my copy.

As for my headaches, she plans to order an MRI of my brain to compare it to the results of my 2009 brain MRI that showed some vascular changes even back then. This new MRI will rule out other conditions, like Lupus cerebritis or some other central nervous system involvement, and hopefully will explain why I’m getting these strange headaches and if they are related to the Lupus or Lyme infection.

She wondered if my rheumatologist had ever mentioned any connection of these neurological symptoms to the Lupus. I told her no. My rheumatologist never really attributes anything to the Lupus. She won’t even commit to explaining to me what a Lupus “flare” really is. It’s like it’s a secret or something.

So, when we wrapped things up, Dr. M gave me my homework assignments:

1. Keep a diary of my headaches.
2. Get blood work completed to make sure kidney function is acceptable for MRI with contrast.
3. Schedule and complete the MRI of my brain.
4. Once results are in, schedule follow-up appointment with Dr. M.

Well, that’s it for now. They’ll call me when they’ve faxed over the blood lab requisition….

Love,

Olivia

Dear Diary,

It’s the Monday after a whirlwind travel weekend, and I’m exhausted and in a truckload of pain. As I pulled myself out of bed this morning, I thought ‘why in the name of all that is good would I schedule two appointments today?’

The first appointment was physical therapy, and the second psychotherapy. Both in the afternoon. The extra free time in the morning didn’t help one bit. I was below empty—that feeling that nothing’s in the reserve tank. Also, the pleuritic chest pain was there, a familiar indication and warning that I need to stop and rest. But, I couldn’t.

By the time I reached physical therapy, I was nearly in tears, just an emotional wreck. How could I continue to feel this bad? All I did was visit my in-laws for the weekend, for crying out loud.

I knew I shouldn’t have gone, but I hate being at home alone and I hate not being by my husband’s side at family functions. It’s where I belong. But, the excitement of traveling and then visiting usually takes a huge toll on me. Leaving me where I am today—in pain and on the verge of tears.

The minute she walked in, my physical therapist knew that I wasn’t doing well. She proceeded to see if my hips and pelvis were aligned. Of course, they weren’t. Sitting in the car for all those hours saw to that. Even though her adjustments and massaging of my knotted up muscles was gentle, I felt extreme pain throughout the 30-minute session. All I could think about was getting heat at the end of the session.

But, I couldn’t stay with the heat as long as I normally do because I had to get to my second appointment of the day, my biweekly psychotherapy session with Dr. O.

Once I arrived there, I let the tears flow like the opening of flood gates. I couldn’t help it. It’s really the first time I cried since learning of the Lyme disease co-infections. I’ve been putting up this brave front for my husband and family, but with the fatigue and the pain, I can’t keep my guard up for very long.

There’s no safer place to get out all the sadness, the anger, and the fear than at Dr. O’s office. I immediately felt relief from that release and from her gentle reminders of avoiding “black and white” (extreme) thinking and allowing my husband to love me and help me.

Well, I guess it turned out that I was smart to schedule these appointments today. They were really what I needed considering the physical and emotional state I was in.

I’ve been in bed since returning home. As I write this, dear Hubby is cooking dinner for us. We’ll eat with bed trays in the bedroom and watch television.

Accepting his help is not easy sometimes, but I do love him for loving me.

Love,

Olivia