Monday, February 22, 2016

Relapse-Free No More

My journey with MS has had some significant ups and downs. Some of the downs include blindness, complete loss of use of two fingers on my left hand (which is devastating to a classically-trained pianist and teacher), weak arms and legs, all over numbness, impaired balance, fatigue, spasticity, anxiety, and depression.
I’ve been enjoying more of the ups in recent years; really since I switched medication to rituximab (a monoclonal antibody therapy used for RA, lymphoma, and other autoimmune diseases, which should be released in a new form and approved for MS sometime in the next year as ocrelizumab).
After switching medications from Copaxone to Rituxan I began to experience actual improvement in symptoms over time. Functions got better and relapses more infrequent. In fact, I hadn’t had a serious relapse that prompted me to call the neurology office in between routine visits in 50 months. Minor bumps, sure, but nothing big.
FIFTY MONTHS!! How cool is that?

Read this post in its entirety:
Damn, My Long Relapse-Free Streak Has Ended

Thursday, February 18, 2016

Being In MS Limbo

The road to diagnosis for MS can be long and winding for many patients. I’m happy for patients who receive their official diagnosis within just a few doctors’ visits. Not happy that they have MS, but happy that they can jump right in and get on with things; attacking the beast with medication, therapy, and determination.
For those of us who are not immediately diagnosed with MS, the feelings involved with the ‘not knowing for sure’ can be frustrating. Especially disturbing is when you suspect that your doctors do not believe you or your symptoms. The worst part may be when there is some clinical evidence that ‘something’ is not quite right, maybe there are lesions in the brain and obvious neurological symptoms, but your tests do not meet the standard diagnostic criteria for an official MS diagnosis.
That’s when the waiting game begins.
I was one of those patients who didn’t receive an immediate diagnosis. In fact, it took more than five years from what was my first obvious and debilitating attack (blinding optic neuritis) to the relapse that prompted additional testing that led to a diagnosis.

Read this post in its entirety:
What Is It Like to NOT be Diagnosed with MS?

Sunday, January 31, 2016

If Not For RA or MS, Would I Still Be Childless?

When I was around 20 years old, I had hopes that I would complete college, marry my sweetheart, and that we would have 3 kids before we turned 30. It was a nice dream, but instead I went to graduate school, we broke up, and I continued on to a doctoral program after completing my Master’s degree in Music Performance. Serious relationships took a backseat.

Just before turning 30 years of age, I moved to the Washington, DC, area to check out the performance opportunities. I wasn’t concerned with finding ‘the right man’ and starting a family, instead I was working on building a successful freelance career which was really picking up nicely when I first experienced an attack of optic neuritis. Until I was diagnosed with MS five years later, things were moving along smoothly.

Shortly before the MS diagnosis, I was introduced to ‘the guy.’ Of course I didn’t know that Rob would become ‘the guy’ until I had known him for a little while. Rob was there when the MS diagnosis became official; he was there for lots of tears and hugs; and he was there when I woke up in the middle of the night screaming and crying in pain from early RA symptoms.

I was 38 when I was finally diagnosed with RA and one of the first things we (my doctor and I) did was begin a medication for which pregnancy was strongly warned against (ie., methotrexate). This was a little late in life to consider starting a family, but it wasn’t TOO late. Women are having children even in their 40s nowadays.

Sometime after my RA symptoms were brought under control, I did run a small experiment to see whether or not I might consider going off treatment to prepare for a potential pregnancy. I stopped taking my methotrexate for a short period of time. Unfortunately, it was only a matter of 2-3 weeks before symptoms began to return. Knowing how AWFUL the pre-diagnosis, no-treatment time period was for me, I started back on methotrexate immediately.


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If Not For RA, Would I Still Be Childless?

Wednesday, January 27, 2016

Passing Your Cold Onto a Loved One

Oh man, now I really feel bad. My husband had to stay home from work today…sick. He’s finally caught whatever crummy bug I’ve been dealing with over the past several weeks. He’s miserable. Now it’s my turn to help take care of him.

The past month has been a bad one for being sick. First, I developed some type of infection with a fever that caused me to become a sweaty, achy mess with lymph nodes that had doubled in size. Since my body temperature normally stays in the 96-97 degree range, it was quite uncomfortable when my fever approached 100 F. But my body seemed to do what it’s supposed to do and took care of the problem. I was sick for less than a week and never did identify the source of the infection. No GI problems, no congestion. Just a high fever.

About a week later I developed an earache. Not too bad of an earache, but definitely present. On day three of the mild earache, my throat started burning and I could hardly swallow. I finally called the doctor and tested negative for strep throat. Her diagnosis: a cold. Congestion began that evening.

Now it’s been two weeks since I saw the doctor and I’m still not over this cold virus. I’ve been coughing, dripping, congesting, sneezing, aching, sleeping, humidifying, chicken-souping, and tissuing my way through the days and nights.

I finally started to feel a little better over the weekend, just in time for my husband to start feeling like he was getting sick. Uh oh. His is a dry cough while I’m still congested. He’s sticking with chicken soup and clementines, while I felt good enough to bake cookies yesterday and do laundry.


Read this post in its entirety:
Giving Your Loved One a Cold is a Gift You Wish You Could Take Back

Tuesday, January 19, 2016

Feeling Better Through Diet and Exercise

I am amazed at how much health can change dramatically in one year.

Last fall, I was in excruciating pain from osteoarthritis. After learning that I have grade 2-3 cartilage loss in the left knee, my orthopedic doctor gave me three hyaluronic acid injections to help ease the pain. He also suggested that the only truly effective way to get better was to ride my exercise bike.

My rheumatologist (the one who just retired) was kind enough to order physical therapy for me so that I could receive expert guidance on what types of activities I should be doing to delay possible knee surgery in the future. She also suggested that I consider weight loss surgery because being morbidly obese was not helpful.

Slowly, I began to ride the exercise bike at home more frequently and for longer periods of time. My physical therapist worked with me for two months to build strength and flexibility. She also determined that my knee cap was “frozen” in place which wasn’t helping matters either. Correcting that situation was enormously painful, but worth it in the long run.

Around the same time, I began to honestly assess what I was eating, document meals and snacks, and use my FitBit to monitor activity. I started slow but began to lose weight after a couple of months. I noticed that if I continued to exercise and document everything, I continued to lose weight. One month that I couldn’t ride the exercise bike the scale didn’t move as much, which strengthens the message that a combination of diet and exercise is most effective for weight loss/management.

Over the course of one year, I was able to drop 54 pounds (and still counting). The pain in my knees is almost a non-issue as long as I continue with the at-home plan my physical therapist created. I have achieved actual remission of my RA, which is different than low-disease activity or near remission. And, I feel pretty doggone good.


Read this post in its entirety:
Diet and Exercise Have Helped My RA

Thursday, December 31, 2015

Visiting a New Doctor's Office

Earlier this week I was meeting a new rheumatologist to possibly replace my doctor who has retired. Ahead of time I picked a few questions to help determine if we might be a good fit. But I was also quietly evaluating the office and its staff – from the logistics of parking, to the receptionist and nurses, and the efficiency of the visit overall.

After negotiating the confusing parking lot and navigating my way through the building to the office, it didn’t take long to get checked in. I was a few minutes early so I read email on my phone and worked a monster Sudoku puzzle. After about 20 minutes, I made eye contact with another patient and we started a brief conversation.

I asked her: How long does it normally take before you’re called back for your appointment? She gave me a sheepish look, so I encouraged her – no, honestly, how long does it take? She said that sometimes it’s “not too long” but that it was an hour for a recent appointment. She asked if I had been waiting long, which I had not, but I noticed that no one had been called back during the 20 minutes I had been waiting and the number of people in the waiting area was growing. (I ended up waiting 30 minutes.)

Not long after this discussion a woman came in and approached the registration desk. She wanted a copy of her lab results and to talk to “whomever it is that usually calls with test results.” The girl at the desk said that person could be any one of them, depending. The previous Friday, the woman had received a phone message regarding lab work and was confused about instructions given to change her medication. She had been trying to call the office all morning and couldn’t get through so she drove up to the office instead.

Based on the conversation, it became apparent that the woman wanted to understand a few basic things: what was abnormal about her lab results, what was the significance of specific tests, why was she being asked to change her meds, what was that supposed to do, and how would she know if the change successfully accomplished what the doctor wanted?

She was obviously concerned and somewhat confused. But rather than offer to let her talk to the nurse, the receptionist responded to her questions with superficial answers that didn’t explain much of anything. I wanted so much to be able to interpret for her what was being said. Her liver enzymes were elevated which is why her doctor wanted her to only take 2 methotrexate tablets that week instead of her usual dose. The patient also wanted to know about SED rate and a few other tests. Her questions had answers, but probably not ones which should have come from a receptionist.


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Evaluating the Doctor's Office: Who Do You Talk To About Laboratory Results?