Emotions of Lupus

Dear Diary,

I had my follow-up appointment with the Lyme disease doctor yesterday. Waking up that morning, I tried so hard to push the nervousness aside. I had plenty of time to meditate about it since Hubby was driving the two-hour commute from Reno to the doctor’s office in California.

Once we arrived, they did as the doctor promised during the first visit and took lots of blood for the Borrelia Burgdorferi (Bb) culture test. The purpose of that very specific test is to see if the Bb are active and to see exactly which strain I have. It thus gives the doctor a baseline to measure the success or failure of a particular treatment.

The nurse who drew my blood had mad skills! Unlike most of the inexperienced phlebotomists I’ve recently dealt with, she found the juiciest, very best vein on the outside of my forearm (where no one’s ever thought of going before). She got it ALL in one shot. Thank God.

Once she ushered us back to the waiting room to be called in to see Dr. M, the nerves I tried so hard to calm down began to surge. I wanted so much for him to tell me that the tests for co-infections were negative. Unfortunately, once he called us back to his office, I could tell by the look on his face that it wasn’t good news.

He said that out of the five co-infections he tested me for, two of them were positive. One positive test was for Babesia duncani, and the other positive test was for Bartonella. According to the lab reports, both co-infections were active, meaning they’re working on my system as I write this and have been for some time.

From what I read in the Lyme disease book, Babesia is the one co-infection that requires immediate treatment—even before the Lyme disease itself. Not treating Babesia guarantees failure in the treatment of Lyme or the other co-infections. As we reviewed the documented results, I couldn’t even focus. And, for some reason, I became Mrs. Motor Mouth—speculating as to when and why this was happening to me. Then, my mind went to the horrible possibility that all the drugs that I currently take might not react well with the treatment, especially the Coumadin. The Plaquenil that I take for Lupus is strangely okay and in fact is even used as part of the treatment protocols for Lyme disease. (This could be why I have had some relief with that drug.)

The drugs Dr. M proposes to use to treat Babesia are Mepron and Zithromax. He said that the combination of these two very strong drugs is our best chance of killing Babesia, while causing the least amount of side effects. I read this in the book, too.

Once I’m established with treating the Babesia, Dr. M will stagger in another drug and herbs to treat the Bb and the Bartonella. Each phase of his treatment plan will be balanced or offset with natural detoxifying medications, herbs, and supplements to help my body rid itself of the toxins from the drugs and the dying off bacteria.

Before we begin, though, he’s asking for clearance from my internist and my hematologist to be sure there’s nothing they consider problematic with the treatment plan. He said my hematologist may want me to go on Heparin shots versus Coumadin to avoid any interactions that may happen.

As I wound down my motor mouth of questions and references to the past, he handed me a prescription for Mepron and Zithromax. I shook his hand and said, “Here we go!” (Meaning, the ride of my life is about to begin.) He smiled. I’m sure he’s never had a patient like me before….

Love,

Olivia

Dear Diary,

As I face one more day until my follow up appointment with the Lyme doctor tomorrow, I just finished reading “The Beginner’s Guide to Lyme Disease,” by Nicola McFadzean. It’s the Lyme disease book that Dr. M recommended.  I’m feeling overwhelmed, angry, and affirmed all at the same time.

Overwhelmed by all the information on the history, research, and treatment protocols. Very scientific stuff. I spent a lot of time trying to pronounce the biological and medical terms I’d never heard of. And, I consider myself pretty savvy in that area, given that I’ve done so much research and had so much experience with my own symptoms, prior to the diagnosis of Lupus and Lyme. But these words were way out there. I don’t think most practitioners not associated with Lyme disease have knowledge of what’s covered in this book!

Then that familiar feeling of anger came up again, especially when it came to the politics of the disease. I mean, there’s such a divide in the medical community regarding how to treat Lyme disease, especially when someone like me tests positive for it without remembering a tick bite. On the one side, you have the IDSA camp and their infectious disease doctors who don’t believe in chronic Lyme disease at all. They say there’s no such thing because if you’re treated for Lyme disease at the onset, then that’s all you need. Any lingering symptoms are termed “Post Lyme Disease Syndrome,” and will resolve in time.

In the opposing camp, you have ILADS (the International Lyme and Associated Diseases Society), made up of doctors who believe that there is such a thing as chronic Lyme disease, and that it should be treated with heavy doses of long-term antibiotics. The “Under Our Skin” documentaries highlight this divide and show how the battleground of Lyme disease actually does no one any good. Patients need the consensus of all experts so that they can make informed choices. Whether it’s a slow, agonizing deterioration or an acute, rapid descent, Lyme disease continues to rob so many people of a life we once knew.

On the brighter side of reading this book, I feel affirmed (and hopeful) by the stories of survivors who overcame this disease. Their symptoms, fears, and personal struggles were so similar to my life in so many ways that I finally feel like it wasn’t all in my head, as some have so insensitively suggested. I mean, I know it wasn’t all in my head, especially based on labs, my symptoms, and other positive clinical tests. But when illness doesn’t manifest itself visually or in a way that is expected, people just don’t believe you’re sick. Sometimes, I felt the need to carry my lab results and doctor reports around with me just to prove to people that there is a reason for my inability to do things and my frequent “No” answers to requests for my attendance or assistance.

Well, now that I’m done reading, I’m almost ready to meet with Dr. M. I just need to modify my list of questions and print out a few documents to answer questions he had about my disability and current physicians.

Thankfully, it’s time for Hubby to massage my aching muscles. I feel like I’ve finished running a marathon, and all I did today was read this book and quickly cook dinner. I guess I pushed myself too far again….

Love,

Olivia

Dear Diary,

I’m always surprised when I have a good day. Today was no different. I woke up with my usual stiffness in my bones and tightness in my chest, but unlike last Saturday, I could breathe. Oh joy! And, this Saturday morning was perfect for a few deep breaths of crisp mountain air.

Saturdays are so important to me because it’s the only full day I have to spend with my Hubby during the week. Not having the preoccupation of extra pain and asthma freed me to reciprocate the love my husband shows me, despite my sometimes grumpy demeanor. So, thankfully, I had enough energy to make him his favorite breakfast—pancakes (gluten-free, of course) applewood-smoked bacon, and two eggs, over easy.

I made breakfast while doing my kitchen dance, as I call it. It is a sequence of highly orchestrated moves designed to minimize the numbness and pins and needles in my legs and feet when I stand for more than 10 minutes. These days, making this breakfast is such a huge accomplishment.

I could look at it as the glass half empty because I used to be super woman who mastered the art of multi-tasking long ago. But, I’ve learned that seeing the glass half full is much more empowering and hope generating, and definitely lends itself to having a good day. It gives me a glimpse of what could be—if somehow, some way, this disease leaves my body.

Love,

Olivia

Dear Diary,

I spent the day waiting for test results and working on our taxes—in bed. I mean, all day…. Laptop and mouse on my laptop tray. Bank statements, mortgage statements, compiled medical and prescription expenses all over the bed. Good grief!

My tolerance for processing the details our finances has fallen pretty low. The only numbers I want to see are the zeros of our credit card balances. Ha! Unfortunately, that’s a real challenge when I have so many medical expenses. You’d think my having a primary and secondary insurance would cover everything, but not so much. For some reason (probably having to do with the new healthcare law), several of my doctors have opted out of participating in health insurance plans altogether. They instead choose to operate on a cash basis. In some cases, I’m able to file with my carrier to get some reimbursement, but not always. That’s the case with this Lyme disease specialist that I see out of state. He was a former Medicare participant, but he opted out, and his patients now have to pay out of pocket and agree not to even try to get reimbursement. Thankfully, he does offer a “Medicare rate,” which is about 20 percent lower than his regular rate.

All I can say is thank God I’m able to pay for my medical care and my medicine. Can you imagine how much worse things would be for me if I couldn’t?

Taxes were interrupted when Hubby brought in today’s mail. An envelope containing my blood lab results was in the pile. I’m a bit overwhelmed by what I think they mean. (This is precisely why I shouldn’t get courtesy copies of my labs.)

The out of state doctor ordered these as part of the Lyme disease test follow up. I expected him to request tests for co-infections, but not these routine tests for thyroid disease, diabetes, B12, hemoglobin A1c, etc. Of course, a couple of the results came back abnormal. My B12 level was 1610 units. That’s a bit on the high side; almost double. My tests also revealed higher than normal hemoglobin A1c, the test for diabetes. Thankfully, it wasn’t high enough for full-blown diabetes, but I am borderline diabetic. I knew that.

It’s just one more thing to add to the list—Lupus, Lyme disease, MTHFR C677T, EBV, etc. I can’t even remember them all. What the heck is going on with my blood?!

I don’t have the results from the Lyme co-infections blood tests yet. These co-infections are bacteria that often accompany the Borellia Burgdorferi (Bb) bug, known to cause Lyme disease. The idea is that the treatment for Lyme disease will be much more effective if the chosen antibiotic kills all related bacteria, not just Bb.

I’ll get those when I see Dr. M in 10 days.

Love,

Olivia

Dear Diary,

I get so much joy from watercolor painting, and I decided to take a class recently. I thought I was successful in adding the new class to my very limited life. Before enrolling in the three-hour, weekly class, I spent each week getting out of the house only to go to my appointments for physical therapy and acupuncture, with the occasional visit to see a specialist, like my rheumatologist, pulmonologist, or hematologist. So, I thought that adding one class shouldn’t be a problem for me.

Well, it turns out that making that adjustment of adding to my limited plate of activities hasn’t been easy. I’m noticing an increase in pain overall. Maybe from carrying supplies, or just sitting in a non-ergonomic chair for too long. Then there’s the pain in the joints of my hands, arms, and shoulders. Sometimes, I even get tremors if I work too long.

So, the joy that I sought in expressing my creativity is sadly dampened by pain. But, the good news is that I still got it! I mean, I’m painting up a storm as I learn new techniques and experiment with the old ones that I knew. I’m so pleased with my work, and my fellow watercolorists admire my abilities.

My psychotherapist explained the importance of finding a way to work around the pain and even work with it. She said to use the pain to create the art. In other words, when I feel the pain, I know that I need to lighten up and just allow the colors and water to work together naturally, rather than forcing it. Once I understood what she said, I felt empowered to continue.

I suppose this is another case of improvising, adapting, and overcoming. It’s surely a philosophy of life that comes in handy for those of us battling Lupus.

Love,

Olivia

Dear Diary,

Wow, it’s been over a month since I last wrote. It’s taken me that long to recover from the two-week trip back East. Traveling with Lupus is ALWAYS a challenge. From making sure you eat properly and get enough rest to making sure you take your meds on time and avoid stressful situations—putting your health needs first isn’t always easy or possible.

We visited my stepdaughter in Michigan, my sister in Maryland, and my son in Boston, traveling by air and by car.

So, as Hubby, who’s a retired Air Force veteran, says, I have to remember to “improvise, adapt, and overcome.” I had plenty of practice with the trip, too. Not that too many things went wrong, but there were interesting and unexpected issues. Like, having to find gluten-free and dairy-free options for my diet on the road. I did my best to find restaurants along our route beforehand, but for one reason or another, it didn’t always work out.

Then, there was the moment when Hubby was so taken by the beauty of George Washington’s Estate at Mt. Vernon, where the family was sightseeing, that he let go of my wheelchair without locking the wheels. Off I went, slowly rolling down the rocky path, still thinking he was pushing me. It wasn’t until I started gaining speed that I realized I was on my own. Oh my goodness! He didn’t even hear my screams as he snapped shot after shot of the sprawling Mt. Vernon property. And, unfortunately, I tried in vain to stop myself by dragging my foot–big mistake. I injured my leg and back trying to stop. Thankfully, a few bystanders came to my rescue and the only thing to fall out of my wheelchair was my cell phone. What a sight that must have been! I was too relieved to be embarrassed and too amused to be angry at Hubby. Poor thing, he felt bad enough.

Then, there was the last night of our stay in Boston. The Air Force Base at Hanscom told us that we couldn’t extend our stay for one additional night due to exercises or some such thing for active duty members. They’re given priority for housing accommodations over retired veterans. So, we had to improvise by finding a hotel at the last minute for our final night visiting our son.

The worst of the unexpected was during the last leg of our trip, at the airport in Michigan, as we went through airport security. I had my wheelchair. The TSA folks made me get out of it to go through the metal detector. That was fine. I had no metal on me, other than my MedicAlert bracelet, and that didn’t even activate any alarms.

The wheelchair, however, was a different matter. As I painfully stood there waiting for them to return my wheelchair to me, I noticed several people suddenly hovering over it. Gloved hands, cotton swabs, and frowned faces. My heart started racing as I wondered what in the world was going on. Hubby went over to ask, and they told him that my wheels tested positive for explosives. WHAT?!

Next thing I knew, I was being informed of my rights to a private search. But, I declined saying they could search me right there in public for all to see. It was humiliating as I looked at those who stared at me. I was shaking and in pain. The TSA woman was kind enough, though.

I just kept trying to focus on how secure I should feel that they’re being conscientious and weeding out possible terrorist activity. But, I’m no terrorist. I’m just a woman with Lupus who’s tired and in pain and trying to get home!

Once the situation was all cleared up, and they realized that I was no terrorist, Hubby and I took the flight back to Reno. I was never so happy to be at home. But I knew the adrenalin surge from the stress of the airport debacle was going to hit me hard. I prayed that I wouldn’t have a flare, but I did.

Two weeks in bed. Constant fevers. Pain when standing. Pain when sitting. Total exhaustion. Numbness. Swelling all over. Tears. The price we who have Lupus pay to live is very high. Visiting family should have been no big deal, and while I was successful at doing the “improvise, adapt, and overcome” thing, I was unable to control my body’s response to it all.

The only way out of a flare for me is to do nothing but rest and recover. I wonder if there’s a saying about that the Air Force….

Love,

Olivia

Dear Diary,

In preparation for our whirlwind trip back East, Hubby and I decided to buy a wheelchair so that I could get around without pain. We plan to visit family in Michigan, Maryland, and Massachusetts.

I’m praying for two things: 1) that I’ll have the energy to manage the trip; and 2) that I’ll avoid any major pain or complications with the Lupus.

Knowing that we’ll be touring and sightseeing in places where cars aren’t necessarily allowed, I asked my new orthopedist what I should do if we had to walk or stand a lot.

She suggested that I get a wheelchair. Her suggestion probably should have floored me, and in the past, I’m sure it would have. But, at this point, it didn’t. It only seemed like a great way for me to continue enjoying my life with my family.

Sure, I’m having moments of fear that this is the beginning of the end of my walking days. And, sure I’m thinking those vain thoughts of how can anyone look good in a wheelchair?

I had the same thoughts when I first starting using the assistive cane. These instruments are a means to an end. I remember when I first was diagnosed with avascular necrosis in both hips, I hated having to use that cane. One very wry doctor told me to just glam it up with some rhinestones and racing stripes and get on with my life.

I suppose I can take the same approach with my new Blue Streak wheelchair. It’s a lightweight, beautiful blue chair and happens to fit me perfectly. And, it’ll sure be nice not having to give excuses as to why I can’t participate in the fun events of this trip.

Now, I just have to figure out how all the other wheelchair passengers make airline arrangements.

Just goes to show, you have to be adaptive and strong to live this Lupus life. No doubt about it.

Love,

Olivia

Dear Diary,

I finally found a psychotherapist here in Reno who I feel I can work well with and be productive. Her name is Dr. B, and she’s a licensed marriage and family therapist. I found her kind of organically through my new physical therapist, who specializes in working with patients who have Lupus and other autoimmune diseases. My new physical therapist has been a great resource for managing my pain and helping me understand what Lupus is doing to me physically. My two therapists—physical therapist and psychotherapist—often work together with people who need help managing pain without drugs.

Dr. B helps with the mind-body part of the pain management as well as the background emotional and psychological issues that contribute to the overall diseased state. She has some big shoes to fill in replacing the therapist-patient relationship that I had in Las Vegas with another psychotherapist, but I feel confident that I’ve found someone who can help me continue on the path to recovery.

I found this psychotherapist in the nick of time, too because now there’s new emotional drama in our family. Yesterday, we found out that the breast biopsy that my sister had last Thursday revealed that she has breast cancer that has spread to her lymph nodes. She sees the surgeon tomorrow, and we’ll find out more about what stage it’s in and whether or not it is metastatic. She’s been feeling like crap for a long time now, so while the diagnosis is shocking, at least we have an answer and can move forward as a family. As you can imagine, Mom is beside herself.

As far as my own health, I’m managing the Lupus issues as best I can. Last week, I met with a hip surgeon that my physical therapist recommended. She seems to think that things will be better for me if I have hip surgery. Unfortunately, as I suspected, the hip surgeon told me that the risks outweigh the benefits for having a double hip replacement. He said he wouldn’t touch me with a 10-foot pole! He recommended, instead of surgery, that I should continue working with my physical therapist, start doing pool exercises, and slowly get back into yoga. That will help to release the fluid in my hip joints, reduce inflammation, and help me to gain more strength.

I got a real treat when my son visited from Boston two weeks ago. We had a blast just hanging out like we used to. It was nice to experience our familiar shorthanded communication that only he and I understand. The jokes and memories that only we share. Whenever I see him I realize how much I miss him. Whenever he sees me, he can’t believe the toll this illness is having on me.  The “visual” of my illness gets to him, he says.

Knowing that he’s doing well proves to me that all the years of illness and pain didn’t stop me from raising an amazing young man. His life is progressing despite having a sick Mom. He’s a college graduate, working full-time in Boston, and he’s just moved in with his girlfriend, who he plans to marry. Yikes! Just kidding, I really like her a lot. 🙂

So take that, stupid Lupus!

Love,

Olivia

Dear Diary,

Turning 50 wasn’t so bad. I had such a beautiful birthday last week on the central California coast, picnicking at Pfieffer Beach in Big Sur and enjoying a nice, fresh seafood dinner in Monterey. It was so wonderful to spend several days away from all the smoke in Reno (caused by the Yosemite Rim fire), not to mention all my exhausting and depressing doctor and physical therapy appointments.

I’m still struggling to manage the effects of Lupus. I guess it’ll be a lifetime struggle, with bad days and better days. My biggest issues are the bone and chest pain and the breathing problems, which I originally assumed (before the diagnosis) were separate, unrelated problems. But, now my asthma/allergy doc says the Lupus is causing the inflammation in my lungs; my dermatologist says Lupus is causing the inflammation and hives on my skin; and my physical therapist and orthopedist say Lupus inflammation is causing my bone deterioration and arthritis in my hips and back.

I’ve been on the Lupus medication, Plaquenil, for about four months now, and I’ve seen improvement only in my energy level. It’s much more manageable than before, although I still get very tired with too much activity. Unfortunately, the Plaquenil hasn’t helped much with the other problems, so my rheumatologist is doubling my dose. *sigh*

Other than the Lupus, life is pretty wonderful for a 50-year old Lupie. Hubby is so devoted and patient, and our life together is peaceful without being too predictable. He often tells me that I don’t look at all like I’m 50 years old. While I might look younger than 50, I surely feel older than 50!

Love,

Olivia

Dear Diary,

It’s been a while since I’ve written. Managing life with Lupus after my appendicitis in February has proven to be a challenge to say the least.

Just after that, we learned that the owner of the house we were renting planned to put it up for sale at the end of our lease in June. Thankfully, they gave us nearly three months notice to decide if we wanted to buy it or if we just wanted to move. Either way, this news surely was the last thing I wanted to think about when I had so much going on with my health.

Meanwhile, we had to plan a trip to see my niece graduate from college in May. I was so nervous about traveling because it always seems to have a detrimental effect. During the trip, I was exhausted, and I had trouble breathing that heavy, humid East coast air.

Then, once we returned home, it got even worse. I had to go to the doctor for pain medication and they said I had a full-blown Lupus flare. This means that I had too much inflammation in my body, which caused all sorts of pain in my chest, legs, hips, and back. I also had trouble breathing, fevers, and exhaustion. I think the trip was just too much for me.

It would have been nice to be able to really get some rest after all that, but it wasn’t to be. After returning home from the trip and getting pressured by the landlord’s real estate agent, we made the decision to move in June. So, in the few weeks before moving, I had to deal with packing and endure the visits of potential buyers looking at the house. That would be difficult for a healthy person, and much more so for a Lupus patient.

We got through it, but moving day was the worst. We found an apartment, and I insisted that we take one on the second level so that we wouldn’t be bothered by noises above our head. I quickly found out that walking up stairs was painful and debilitating. At one point on moving day, I was midway up the stairs, and my body wouldn’t go any further. I couldn’t move my legs at all. Hubby had to pick me up and carry me the rest of the way. All I could think was, “Oh my goodness, what have I done?”

Since then, I’ve been getting back to managing my health by getting established with a whole new cadre of specialists. I found myself sending this e-mail to Hubby so that he could keep track of my latest appointments:

Hi Baby,

Yesterday and today, I finally made my appointments with the various doctors I need to see. Here’s the list for you:

Dr. V (Hematologist) — 08/20/2013 at 4:00 pm
Dr. H (Colonoscopy) — 09/12/2013 at 8:30 am
Dr. S (Hip & Back Evaluation) — 09/19/2013 at 10:30 am
Dr. S (Teeth Cleaning) — 09/20/2013 at 10:00 am

I also had these appointments already scheduled:

 Dr. N (Allergist) — 08/19/2013 at 10:30 am
Dr. T (Rheumatologist) — 09/03/2013 at 9:00 am
Dr. G (Internist) — 12/10/2013 at 12:30 pm

Those are just the doctor appointments, and these do not include my ongoing physical therapy appointments twice a week.

It’s been one heck of a busy summer, and I’m still working hard to feel better. My doctor is doubling my dose of medication to see if it helps at all. Managing this disease along with the challenges of real life isn’t for the faint of heart.

Love,

Olivia