Flaring

It's not a good sign when Rheumy starts my appointment by asking if I've been sick.  On the contrary, I've been feeling pretty good.  Then he asks if I've had any mouth sores, rashes, or symptoms of Raynaud's.  My fingers have gotten white when cold, but that is fairly normal for me.  He asks if I've experienced any lupus symptoms lately...I recall that my finger joints were bothering me a little bit last week.  Then he hits me with the news -- my blood work does not look good and he thinks I may actually be flaring.

My hemoglobin level dropped back down to 9.5.  As a reminder, hemoglobin measures the amount of oxygen being carried by your red blood cells.  Normal levels for a female are between 12-16 g/dL.  I have been hovering around the 10.5 range for the past couple months with the help of taking weekly Procrit shots.  I was quite surprised to hear that my hemoglobin level dropped to the level I was at before starting Procrit, because I've been feeling like I have more energy lately.  Previously when I was at this level, I had very little energy and could barely make it through the day.

My sedimentation rate also shot up.  As a reminder, The  Erythrocyte Sedimentation Rate (ESR) test is a blood test used to detect and monitor inflammation in the body. The test measures the rate at which red blood cells (RBC) settle and is measured in millimeters per hour. The sedimentation rate increases with more inflammation. The normal rate 0-15 mm/hr for men and 0-20 mm/hr for women.  Rheumy said that when I first came in, my sedimentation rate was in the 60s.  This is when I was experiencing extreme joint pain and could barely stand or do things with my hands.  With treatment, it has steadily gone down and I've been hovering in the 20s-30s.  With this last test, I was in the 80s!  I did notice a little joint pain last week, but nothing like what I had a year ago.

The biggest worry with my bloodtest, however, was my white blood cell count.  It had dropped to 1.2 (normal range is 3.8-10.8).  There are different types of white blood cells, and the one Rheumy was particularly concerned about was my neutrophil count.  Neutrophils are the white blood cells that help your body fight off infection.  I'm not sure exactly what the unit of measure is, but Rheumy mentioned that when you level hits 0.5, you are usually hospitalized.  My level is at 0.75, so it is dangerously low.  Rheumy warned me that if I get sick or have a fever, I need to call him right away.  I came home and did a little research on Neutropenia.  It is interesting to note that when the Absolute Neutrophil Count (ANC) level is below 500 (which may be equivalent to the 0.5 measure Rheumy used), people do not show any sign of infection.  This is because of the lack of neutrophils to elicit any biological response.  Hopefully that is not why I don't feel sick...

We discussed starting me back on prednisone to bring my blood counts back up, but I was hesitant to get back on steroids.  We could stop taking the azathioprine, which could be causing the low blood counts.  However, if the low blood counts were caused by lupus and not azathioprine, getting off of the medicine would make it worse.  Since I was feeling good, we decided to wait and test again next week.  It may have been that my body was being temporarily stressed and caused these abnormal blood counts.  If things don't look better next week, we'll need to take action.

For now, I'm going to try to take it easy and let my body rest.  I may be to blame for this flare because I have been pushing my body too hard.  When I start to feel good and have more energy, I want to take advantage of it.  Trying to do too much, however, will send me into a flare.  I think this is a problem that many lupies deal with.

- a little lupie -

One Year...

Today marks one year from my lupus diagnosis.  

The first year of lupus was a year of survival for me.  I gave in to lupus a lot and did whatever I needed to make it though the day.  I spent many days doing nothing but lying in bed.  I didn't exercise much because my body was always too tired.  After not being able to keep anything down and losing ten pounds, I gained my appetite back and ate anything and everything...it just felt so good to eat.  When I started gaining the weight back and then some, I blamed it on the prednisone.  I basically just did what I could to survive, and I did -- I survived a year with lupus.

But going forward, I want to do more.  I don't want to just survive, I want to live.  I want to be able to go out and be active again.  I want to eat healthier and take less medication.  I want to take care of my body so that it can take care of me.  I want to prove that although I have lupus, it doesn't have me.

- a little lupie -

A New Year's Resolution

I just told one of my friends about my lupus condition and shared this blog with her.  She was reading it from the beginning and I suddenly get a chat message from her: "You go the whole day at work without peeing?!?" or something along those lines.  I found it kind of funny that out of everything she had read, that is what stood out to her.  I confirmed that it was true, but didn't remember writing about it.  She cited "Last post in January" for me.  The discussion that followed went something like this:

Her: Do you do that on purpose?!
Me: No, I just don't drink enough water during the day to have to pee.
Her: I will bite my tongue.
(One minute later)
Her: You really need to drink more water.  I'm really bad at biting my tongue.
Me: I know.
Her: Blah blah blah....water...blah, blah, blah....
Me: Okay, okay...I will make it my New Year's Resolution to drink more water.  I think I'll even make this my next blog post.

...and here we are...

- a little lupie -

Quick Update

Hemoglobin level dropped to 10.6.  Hemey keeping me on 4,000 units of Procrit weekly.

My white blood cell count is still low.  I'm a little confused as to why lupus patients usually have low white blood cell counts when their immune system is overactive.  This seems counterintuitive to me.  I'll have to ask Hemey/Rheumy at my next appointment.

- a little lupie -

Belated Rheumy Update

I went to the Rheumy almost a week ago but didn't update, which can be taken as a good sign.  It was a pretty uneventful appointment and I don't have to go back for another 8 weeks (yippee!).  I must say, though, that after being to several other doctors offices, I really like my Rheumy.  He, himself, is good -- he listens to me, explains things and offers me options, and makes sure all of my questions are answered.  The other things that I really appreciate are his staff and his office.  His front office is organized, responsive, and friendly.  They know who I am when I walk in, and I never have to wait very long.  The office itself is tidy and CLEAN.  I don't feel gross and like I don't want to touch anything or sit on the chairs like I do when I visit other doctor offices.  These may seem like little things, but they make a world of a difference when having to do an otherwise unpleasant thing like going to the doctor.

My laboratory results still showed low blood counts -- my hemoglobin is still right at 10.9, which is lower than "normal", but the highest it can be for me to keep getting my Procrit shots.  My white blood cell count is also still low.

My fatigue has been lessening thanks to the Procrit, but now I have to be careful not to overdo myself.  I'm so excited to be able to have the energy to do things after coming home from work and stay up past 7:00 that I do...but then I don't get my 9 hours of sleep and feel crashed the next day.  Also, with the holidays, things are much busier again.  This is around the time last year that I started showing symptoms before my diagnosis, so I'll need to watch out.  Stress is one of the triggers for lupus.  I think I've been pushing myself a little too much this past week, and it is taking a toll on my body.  Time to take it easy for a while...

- a little lupie -

Feeling Better

It's been three weeks since my first Procrit shot.  I feel like it has given me more energy than before, but I still don't feel "normal" or how I feel like I should.  It has helped me in that I have some energy to run a quick errand or go out to dinner after work.  I used to be wiped out and in bed by about 7 pm, but I can stay up until 9-10 now.

I went to see Hemey today and my bloodwork confirmed that my hemoglobin did indeed go up, which is the good news.  The bad news?  I am at 10.9...once I hit 11, I can't get the Procrit anymore.  I know I should be grateful for what I have, but a part of me is a little pissed that this is the best I can get.  A level between 12 and 15 is considered normal, but since I am "good enough to survive," I don't deserve better?!  Hemey dropped my Procrit to 4,000 units weekly (previously I was at 10,000 units weekly) to try to keep my hemoglobin at the same level.  If I go above 11, I'll have to stop taking the Procrit for a while.  Hemey said that the lowest dosage they give is 2,000 units every other week and the highest dosage is 60,000 units every week, so I am on the low side.

Oh, how I'd love to just feel "normal" again...

- a little lupie -

Grand-lupie?

When the doctors first suspected that I had lupus, they all asked if anyone in my family had lupus.  I said "no," because there was no one in my family that was diagnosed with lupus.  However, now I am realizing that not being diagnosed does not mean that they didn't have lupus.

In particular, I have been wondering if it is possible that my grandma had lupus.  She died of cancer, but I remember her dealing with joint pain, fatigue, and low blood count.  This was all before I got diagnosed with lupus, so I couldn't relate to it, but now that I think about it, it all sounds very similar.  In addition, a study has shown that patients with lupus are 15% more likely to develop cancer than the general population.

What makes lupus so difficult to diagnose is that it's symptoms are so similar to other diseases.  Is it possible that lupus was overlooked by doctors because they could just as well explain these symptoms as being caused by the cancer?  In my grandmother's day, a lot less was known about lupus, so it may not have even been something doctors would consider.  Although lupus is not necessarily hereditary, researches believe that there is some kind of genetic link that makes one more predispositioned for the disease.  Now, I'm not saying that my grandma had lupus, but I'm just thinking that it could be possible.

- a little lupie -

Insurance

One thing lupus has taught me is not to take your health for granted.

Less than a year ago I thought I was healthy and hardly ever went to the doctor.  When I started my new job in December and had to enroll for medical benefits, I declined coverage (I was covered under my husband's plan).  I had been considering getting a life insurance policy but kept putting it off because I didn't really have a need for it (no dependents, no house, etc.).

On January 1, 2011, that all changed.  I think the universe was playing some cruel joke on me in that I got sick on the day that my additional medical coverage would have started.   January 1st is the day I got sick with what I consider my first flare and what eventually led to my lupus diagnosis.

From there, everything changed.  Doctors and laboratory tests became a weekly occurrence, and I silently cursed myself for mistakingly thinking I was so healthy that I didn't need the additional medical insurance.  I was now branded with the dreaded "pre-existing condition"designation.  A couple months later, I applied for life insurance and was told that I do not qualify.  Luckily, I had applied for my company's group life plan last year, so I have a little bit of coverage.

I am now going through open-enrollment at work for the next calendar year.  I've signed up for my company's medical benefits so that I'll have dual coverage.  I've been tracking my out-of-pocket medical costs this year, and if next year is similar to this year, I'll come out about even.  If something should happen that lands me in the hospital or if my health starts to deteriorate, I'll feel better knowing I have that additional coverage in place.

There are other things like long-term disability insurance that I looked into increasing the coverage on, but after looking into it, I realized that my pre-existing condition prevents me from increasing coverage.  Luckily I was enrolled in the basic company policy in December before I was diagnosed, so I still get some coverage.

I guess the lesson here really is that these things can happen to anyone and that very rarely do you expect it.  Do what you can to prepare for these situations.  Prepare for the worst, hope for the best.


- a little lupie -

Sunsick

Headache.  Nausea.  Fatigue.  All after half a day in the sun.  Coincidence?  Punishment?  I'm not sure...maybe I am more photosensitive than I thought.

My workplace does a lot of community service events, which I like, but they usually always involve physical, outdoor activities.  Most people like them because it let's them get out of the office, and they usually follow up by doing something "fun" like going on a hike.

As a lupie, this doesn't quite work for me, but I go along with it because it is somewhat expected for me to participate and I don't want to make things difficult.  In this particular instance, the group I was with was not the folks I usually work with in my department (who know about my condition).  It was a cross-functional group of folks across the organization who I don't know very well.  I didn't want to bring up my condition because you never know what kind of prejudices people have, and it could be very likely that I might want to apply for a position in their department in the future.  At the same time, I was feeling weak and sick trying to do yard work in the hot sun and didn't want to look like a lazy slacker.  I tried to take it easy for as long as I could, but eventually had to go for a long water break.  I was somewhat relieved when it started raining, sending everyone to head for shelter...at least for a while.  I took on easy jobs where I could -- raking, pulling weeds, etc., but I think I probably ended up looking like a slacker.

After lunch, most of the folks went on a hike, but I declined and went home early.  The hike was optional, and I wasn't the only one who didn't participate, so I didn't feel as guilty.

I got home, took a shower, and took a long nap.  I woke up to a pounding headache, took some Alieve, then went back to sleep.  It's now the morning after, and I feel a lot better.  Not sure what I should do next time we have another outdoor activity...

- a little lupie -

A Hit of the 'Crit

I have been feeling pretty drained for the past week or so.  Even after a full night's sleep, I wake up feeling tired, and I drag throughout the day.  I've found myself being more aware of rationing out my spoons for the day.

When I went to see Hemey today, I knew my blood count would be low, and it was.  My hemoglobin was at 9.3, so Hemey asked me again if I wanted to try the Procrit.  I have been thinking about it the past couple weeks, and the thought of actually feeling "normal" and having energy has been quite alluring.  I decided to give it a try.  I had to sign the consent form since Procrit is a black box drug then got a quick, painless shot in the arm.  Procrit is a Erythropoiesis-Stimulating Agent (ESA) which stimulates the bone marrow to make more red blood cells.  I'll need to get weekly shots, and it may be a month before I start to feel the results.  I'm a little bummed because I was hoping for a quick-fix that I'd feel instantly like I did with Prednisone.  I see Hemey again in three weeks, so we'll see if the Procrit starts to work for me...

- a little lupie -