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 -

Hemey Update

Went for a follow-up with Hemey today...he was better today.  We were at his other office location, and he didn't seem so rushed.  We drew my blood to check my blood counts and they dropped again.  Hemoglobin is in the 9's (normal for women is 12-16).  We got a pre-authorization from my insurance company for Procrit, but I'm not ready to jump into it yet.  I talked to Rheumy and he said that if I'm not sure, just wait a bit and see...if my lupus improves, my blood counts may improve too.

I was much better prepared with questions this time, and Hemey seemed more willing to address my concerns.  The Procrit he would prescribe for me would be a very low dose, so he again said that there would be no side effects.  I asked him about the black box warning and why the FDA would put that warning on a drug if there were no side effects.  He explained that a lot of athletes use Procrit to bring their hemoglobin up to above-average levels, which makes their blood thick and can lead to heart attack, stroke, etc.  Since we are not even bringing my hemoglobin up to regular levels (just up to a level to make me feel better), I wouldn't be at risk to those conditions.
 
I asked why we don't aim to bring me to a normal range and he said that insurance wouldn't cover it if my hemoglobin level is above 11.

I also asked again about how long I'd have to take the drugs.  Hemey said that since it is caused by a lifelong condition, the therapy would be life long as well.  The drug only temporarily boosts the hormone level to help the bone marrow produce red blood cells.  I asked if there were any adverse effects to starting and then stopping the drug.  He said no, just that I would start "dragging" again.

Hemey doesn't see my blood counts getting better since I am taking azathioprine, which he describes as a chemotherapy drug that decreases my bone marrow.  Methotrexate (the other drug Rheumy gave me the option of) would have the same effect.  However, taking azathioprine allows me to get off of prednisone, which has much more damaging long-term effects on the body.

Hubby was with me and asked if it would cause any damage to my organs -- kidneys, heart, etc., and Hemey said no.

I asked him if he would recommend that I take the Procrit.  He said that it depends how I feel.  If I feel okay, then no need to take it.  If I am "dragging," he would recommend it.  I explained to him that I feel tired, but I can get through the day okay.  I told him it is hard for me to know what "normal" is.  He concurred that a lot of patients don't really realize how much they are dragging until they take the Procrit and realize that life doesn't have to be the way they were living it.

I told Hemey that I wanted to wait and see, and he was okay with that.  He said that we'll check my levels again in 3 weeks and if it drops again, he would recommend the Procrit shots.  They don't seem as scary now as they did a week ago.  I am feeling weak and tired, but not enough that I can't deal with it.  If my hemoglobin continues to drop, I will consider starting on Procrit.

Oh, and I also got my flu shot today!

- a little lupie -

Flu Shots and Lupus

It's that time of the year again...flu season.  Rheumy recommends that I get the flu shot (shot, not the nasal spray).  Close family members should also avoid the nasal spray because it contains a form of live virus and is not safe for anyone with an immune-compromising disorder or anyone taking an immunosuppressant medication (such as azathioprine and prednisone).  While the flu shot is generally recommended for lupies, you should check with your doctor before getting any vaccines.

Here is more information about flu shots from the Lupus Foundation of America:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2688&zoneid=527

- a little lupie -

Searching For a Cure

During my last visit, Rheumy told me about a lupus study that one of his colleagues from Stanford is involved in.  They are trying to find the genes that cause lupus, but because they are located in Oklahoma, they are having trouble getting Asian participants.  Rheumy gave me some information about how I can participate if interested.  While I'm not a scientist or a billionaire, this is one way I can help to find a cure for lupus.

Here is a link for anyone else who might be interested in participating (they are also looking for family members of those with lupus and for those who have no family members with lupus):
http://lupus.omrf.org/index.html

- a little lupie -

Procrit

Hemey got my lab work back and concurred with what Rheumy suspected -- anemia of chronic disease.  He said that my hemoglobin levels increased slightly but that my white blood cell count was still low.  The low hemoglobin is probably what is causing me to feel weak and tired all the time.  He said that I could take Procrit shots if I feel like I am dragging, and that it would stimulate my bone marrow to create more red blood cells.

I'm sad to say this, but I am not too impressed with Hemey.  He does not explain things well.  He asked me if I had heard of Procrit and when I said no, he just told me what I said above (oh, and that it was a highly abused drug by athletes) and then wanted me to decide whether or not I wanted to take it.  I had to prod him to tell me more about it and when I asked about side effects, he said "at your levels, there are none."  I don't know, I find that kind of hard to believe, especially because he mentioned that this medication fell under FDA's "black box warning" and I'd need to sign a consent form to take it.  I wasn't sure what this meant, so when I Googled it when I got home, and I saw that this label indicates that the drug carries significant risk of serious of life-threatening adverse effects.  Scary!  And Hemey made it sound like it was nothing!  When I asked him how long I would need to take the shots, he said it would be weekly forever.  To me, this sounds not only inconvenient, but pretty serious if it is something I'd need to do for the rest of my life.  To Hemey, he just saw it as "but it would only take 5 min, and you wouldn't have to see me every time...just come in to get the shot and leave."  He said they wouldn't aim to bring my hemoglobin levels back up to normal, but just high enough to make me feel better.  When I asked if there were any other options, he said no.  It was too hard for me to make a decision based off of the information he told me, so I said I'd need to think about it (meaning I'd have to go do my own internet research -- and I wanted to talk to Rheumy to see what he thinks too). 

In the mean time, Hemey printed out an information sheet for me to read and is going to find out what the insurance guidelines say to see if they would even cover me.  Normal hemoglobin levels for adult women are between 12-16 gm/dl.  My last blood test was around 10, and prior to that I was around 8-9.  I guess at a level of 10 some insurance companies don't think it is necessary, so they won't cover the cost of it (it is expensive).  If insurance won't cover me, I probably wouldn't do it.  If it would be fully covered, I'm not sure what I would do.  On one hand, the weakness and tiredness I feel is becoming my "normal" and just something I deal with every day.  It is the thought of the possibility of having more energy and being able to do things that makes me wonder if I should give it a try.  Anyone have any experience or thoughts to share?

- a little lupie -

Rheumy

I had a pretty uneventful visit with Rheumy on Saturday.  Blood counts are still low, but we're waiting to hear back from Hemey about that.  Other than that, I have been doing pretty well so we decided to stop the prednisone (yay!) and my next appointment won't be for another 2 months (double yay!).  The azathioprine has been giving me some tummy/digestive issues, but when Rheumy asked if I wanted to stop taking it, I said not if it is working.  So, I'll put up with it for now...it's a lot better than the pain I was dealing with before.

- a little lupie -

CSI: Hemey

I went to see my new Hematologist (Hemey) yesterday.  After waiting in his waiting room for about an hour, I finally got called to the back to see him.  They had some word puzzles posted on the wall, which makes me think that long waits are not unusual around there.

After solving most of the puzzles, Hemey finally came in and introduced himself.  He explained that Rheumy had sent me to him to help discover the cause of my anemia.  He asked me about my lupus, when it started, what I experienced, and what medications I was taking.  He also had copies of my labwork.  He said that they would run more tests to get to the cause of my anemia, but he thinks it could be due to:

1) Lupus

2) Hypothyroidism - he noted that my thyroid levels look low, and he was surprised that my medication dosage had actually gone down in the past six months.  He decided to run some tests to check my TSH levels again.

3) the Azathioprine (Imuran) medication I am taking - he explained that it is a chemotherapy drug used to treat cancer patients and that it could also cause anemia.

He said that this was like detective work and that they would need to keep running tests to narrow down the possibilities.  Once they found the cause of the anemia, hopefully they will be able to do something to fix it.  An example he gave was that if he found the cause to be that my body wasn't producing enough of the hormone needed for red blood cell production, he could give me a hormone supplement to help.

He sent me to his lab to get blood drawn and scheduled me for a follow-up appointment next week.  Hopefully we'll be closer to figuring this all out!

- a little lupie -

Too Many Pills

I went to pick up some of my maintenance meds from the pharmacy and saw that Rheumy had called in the prescription as a three-month supply.  Seeing the huge containers filled with pills made me realize just how much drugs I am putting into my body.  This was only for 2 out of the 4 medications I take daily.

I know some people have had success with a naturalistic/holistic approach to treating lupus, but I don't know if I'm ready to try that route yet.  Seeing all of these pills certainly makes me think about it, though.  I really hate to rely on pills for the rest of my life.

I'm also collecting quite a nice supply of orange bottles in my medicine cabinet.  I feel bad throwing them away, but I'm not really sure what to do with them.  Any ideas?  I feel like they would be useful for something...craft supplies, maybe?

No News

In lupie world, no news is good news.  Things have been pretty uneventful healthwise, which is a good thing.  I still haven't had any joint pain since starting the azathioprine.  I have an appointment set up with my new Hemey on the 15th then another Rheumy appointment on the 17th.  If I need to do blood tests for Hemey, I'm going to see if I can consolidate them with my normal Rheumy blood tests to save myself a couple vials of blood.

- a little lupie -

To Tell or Not To Tell...

When I first got diagnosed with lupus, there was the question of whether or not to share the information with my co-workers.  I probably didn't think through it as much as I should have, but since I was out of work for 2 weeks, they were concerned about me, and I decided to tell them about my diagnosis.  Part of my decision was because I knew I'd have to take additional time off for frequent doctor visits and in case I started flaring.  I've only shared the information with the 6 others in my immediate work group, and I'm very lucky that they've been very understanding.  It turns out that 1 of the 6 also has lupus, so we're able to relate on some level.  The culture of my organization is also one that puts a high emphasis on personal well-being and family.  I'm also very lucky to work in a flexible work environment which allows me to work flex hours and work from home if needed.

I know that the decision to share this kind of information with your co-workers is a very personal one and can depend on a number of factors.  I know other lupies have not been as lucky as I have been.  Often times others do not understand lupus, and because it is a disease in which you don't LOOK sick, many times people don't realize when you are in pain or fatigued.  I'll admit that before I experienced fatigue, I didn't understand it and how it is different than just being tired or lazy.  Sometimes co-workers can resent that you need to take so much time off from work or that you can't function at 100% due to the lupus fog.

I don't want lupus to be an excuse for why I can't do things, but I guess I'm hoping it will serve as some kind of explanation as to why I may need to take it slower sometimes...and I think that is something that everyone should do, lupus or not.

- a little lupie -

Anemia Blood Tests

I got a copy of my blood test results in the mail today, so I have a little more detail on what tests Rheumy ran.  Once again, I had to do some research to understand what each of these tests were for and how to interpret the results.  I have found labtestsonline.org to be a great source of information.  They do a great job of explaining why a certain lab test is done, the background behind how the body functions, and what the results mean.  I gave a brief overview below, but you can click on the links to get a lot more detailed information.


Haptoglobin

Haptoglobin testing is used primarily to help detect and evaluate hemolytic anemia and to distinguish it from anemia due to other causes; however, it cannot be used to diagnose the cause of the hemolysis.

Hemolytic Anemia occurs when the red blood cells (RBC) are destroyed by the body prematurely.  The average RBC lives in the blood for about 4 months.  With Hemolytic Anemia, this can be shortened to just a few days.  The bone marrow is not able to produce new RBCs quickly enough to replace those that have been destroyed, leading to a decreased number of RBCs in the blood, which in turn leads to a diminished capacity to supply oxygen to tissues throughout the body.  This type of condition can be inherited (e.g. Sickle Cell Anemia) or acquired (possibly as a result of an autoimmune disease, such as lupus).

When haptoglobin levels are decreased, along with an increased reticulocyte count and a decreased RBC count, hemoglobin, and hematocrit, then it is likely that you have some degree of hemolytic anemia.

My haptoglobin levels were in the normal range, so I likely do not have hemolytic anemia.



Iron/TIBC/Ferritin

This set of tests is often ordered to differentiate between different types of anemia (a condition that occurs when the level of Red Blood Cells (RBC) and/or Hemoglobin in the blood are decreased).

The Serum Iron test measures the amount of iron in the blood.  The Total Iron Binding Capacity (TIBC) test is used to assess your body's ability to transport iron in the blood.  These two tests allow the transferrin Saturation to be calculated.  Transferrin Saturation reflects the amount of iron being transported in the blood and its capacity to carry more.  The Ferritin test is used to determine your body's total iron storage capacity.

A summary of the changes in iron tests seen in various diseases of iron status is shown in the table below.

Disease	Iron	TIBC/Transferrin	UIBC	%Transferrin Saturation	Ferritin
Iron Deficiency	Low	High	High	Low	Low
Hemochromatosis	High	Low	Low	High	High
Chronic Illness	Low	Low	Low/Normal	Low	Normal/High
Hemolytic Anemia	High	Normal/Low	Low/Normal	High	High
Sideroblastic Anemia	Normal/High	Normal/Low	Low/Normal	High	High
Iron Poisoning	High	Normal	Low	High	Normal

Based on my results, rheumy thinks it may be Anemia due to Chronic Illness.

- a little lupie -

Hemey

When I last saw Rheumy, my blood count was not improving, so he wanted to make sure that the lupus was not attacking the red blood cells.  He ran a few more tests and just called to say that the results came back okay.  He thinks it may just be anemia of chronic disease, meaning that the lupus is affecting my body's ability to produce red blood cells.  When my lupus symptoms improve, my anemia should improve.  To be sure, he is setting me up with a hematologist (which I will nickname "Hemey"). 

- a little lupie -

Another Rheumy Day

Went to see Rheumy today.  My white blood cell count is back to the normal range, so it looks like the azathioprine is helping.  My red blood cell count, however, is still low.  Since my other lupus symptoms seem to be getting better (still no joint pain!), Rheumy is going to run some other blood tests to see if my anemia could be because of something other than lupus.  I remember being told I was slightly anemic when I first got diagnosed with hypothyroidism about ten years ago, so there's a good chance it may be due to something else.  We just want to make sure it is not the lupus attacking my red blood cells.  We should get the blood test results back around Wednesday, then we'll see if I need to go see a hematologist.

I also mentioned to Rheumy that when I stand up after sitting or laying down for a while, I get lightheaded and can't see for a couple seconds.  It is something I have always experienced occasionally, but I have noticed it a lot more recently.  Rheumy said that when you are laying down or sitting, your blood pressure is lower because your body doesn't have to fight as much gravity.  When you stand up, the nerves in your body help to raise your blood pressure so that it can get the blood up to your brain.  With lupus, sometimes these nerves don't work right.  We will see what my blood test results are, and see a hematologist if necessary.  If everything is okay and I am still experiencing this, I may need to see a neurologist.

Other than that, he said I am doing well.  We're dropping my prednisone down to 1 mg and I don't have to go back to see him for six whole weeks!  Looks like I graduated to the next level!  :)

- a little lupie -

Juicie Lupie?

Okay, so I watched Fat, Sick & Nearly Dead last night.  Warning, there may be some spoilers in this post, but I think we can all guess what happens -- fat, unhealthy guy goes on a juice fast and gets skinny and healthy. 

It really was interesting to follow Joe on his journey across America (though I'm still not sure why he had to travel across the US, especially when he's from Australia), but it was even more interesting to follow Phil as he started his juice diet.  Who is Phil?  Phil is a truck driver that Joe randomly met at a truck stop that had the same rare autoimmune disease (urticarial vasculitis) as he did.  Joe shared his juicing experience with Phil and gave him his card if he ever wanted to try it and needed help getting started.  Joe finished his 60 day juice fast and returned to Australia.  Months later, he got a desperate call from Phil who said he didn't know what else to do and would like to accept Joe's offer for help.  Joe dropped everything to meet Phil in Iowa and help him start a 10-day juice fast.  After 10 days, Phil was doing so well he increased it to 30 days, then to 60 days.  Long story short, juicing helped Phil not only change his health, but his whole life.  In addition, he was able to get off of the hydroxychloroquine, methotrexate, and prednisone pills (sound familiar?!)!  He is no longer a truck driver and now spends his time helping and inspring others to get healthy and improve their lifestyle.
 
While I don't think I could do a juice fast, the film has gotten me to think more about my diet.  I definitely would like to incorporate more fuits and veggies into my diet and decrease the amount of processed foods I eat.  Here is a link to the Reboot website if you'd like to learn more about the program and juicing:
http://jointhereboot.com/

- a little lupie -

Fat, Sick & Nearly Dead

Don't worry...I'm not talking about myself (although, at times I am chubby, unhealthy, and not living life to the fullest).  Fat, Sick & Nearly Dead is a documentary that I've seen on my Netflix page for the past few weeks.  I never bothered to read the info on it since I'm not really into fad-diets or exercise programs. 
HOWEVER, as I was browsing through some of my lupie blogs, Carla (The Singing Patient), wrote about the DVD and mentioned that it was about Joe Cross, a man who was 100 pounds overweight thanks to all the steroids he was taking for a debilitating autoimmune disease.  Now this caught my attention! 

The Fat, Sick & Nearly Dead website says that the film documents Joe's journey as he decides to go on a 60-day juice fast and travel across the US to talk to other Americans about their health. 

The film has gotten good reviews, so I am inclined to check it out.  I've added it to my Netflix queue and will report back once I've watched it.

- a little lupie -

Malaise

I never heard of the term "malaise" before I had lupus, but I'm pretty sure it is what I am suffering from these days. 

Malaise can be defined as a generalized feeling of discomfort, illness, or lack of well-being.  It's when you know that something is wrong but can't pinpoint what it is. Malaise is a symptom that can occur with almost any significant health condition. It may start slowly or quickly, depending on the type of disease.  Fatigue occurs with malaise in many common diseases. Mailaise can be accompanied by a feeling of not having enough energy to accomplish usual activities.

My nausea has subsided, and has been replaced by malaise.  I don't necessarily feel bad -- I can still manage through my day -- but I definitely don't feel good.  Malaise may be a symptom of lupus, and it may be a side effect of medication, so it is difficult for me to to identify the cause.  I have found that once I start to get hungry, I quickly become weak and fatigued.  I also need to allow myself more time to rest between activities.  Hopefully this will pass soon...
- a little lupie -

I Hate It...

I am sitting here with 4 little pills in front of me....stalling...because I hate taking my medication.  It sounds really silly, but it is really something I dread.  I almost would say that it is the worst part of having lupus, but now that really is silly.  I still haven't mastered pill swallowing, so it takes me a couple gags before I get it down.

The other part I hate is probably something that others can relate with -- the side effects.  Right now, my joints and fatigue are not that bad, and the number one thing I am suffering from is the nausea that comes from taking my medication!  Knowing that the nausea is connected to the pill makes it even tougher to swallow!

I take my azathioprine and plaquenil at night now so that I can sleep through some of the nausea, but it causes me to put it off and put it off.  When I took all my medication in the morning, I'd do it and it'd be over for the rest of the day.  Now it is something I spend the whole day dreading... :(

Okay, guess I have to stop whining and suck it up now (actually, swallow it down).  Here I go...

- a little lupie -

The BaRF Meter

I enjoy reading Dr. Grumpy's blog -- not for medical advice, but for some medical humor.  The humor doesn't come in the form of jokes, but in the absurdity of real-life situations this neurologist comes across every day.  In a recent post, he shows a medical rating scale he came across to ask kids how nauseous they feel.  It is called the Baxter Retching Faces (or BaRF) Scale.  This is for real, and further Googling shows that quite a bit of research went into its development.

Since I have been dealing with nausea recently, I thought it might be interesting to show how I am feeling on the BaRF meter.  I am currently a 2, with just a little uneasiness in the tummy.  However, when I don't have food in my tummy and I start to get hungry, that can quickly change to a 4 or 6.  I've had a couple days in the past couple weeks where I reached an 8 and 9.  I'm making up the 9 because I was dry heaving but nothing really came up.  Luckily, no 10 yet...

Overall, I am feeling less nauseated than I was when I first started taking the azathioprine.  Hopefully this is a good sign that the nausea will eventually pass.

- a little lupie -

Busy, Busy Lupie

I haven't forgetten about my blog!  I actually think about writing every night, but then I get too tired to open up my computer and am not good enough with my phone yet to type a whole post while lying in my bed.

It has been a busy couple of weeks for us.  Every day after work we would work on the new house -- installing molding, patching up holes, painting, cleaning, etc.  Then when it got dark, we'd head to the old house and start packing up for the move.  We'd work 'til late at night, wake up the next morning, load up the car with some of the boxes we packed, go to work, go to the new house to unpack the boxes and do more patching/painting/cleaning.  It made for some long days and nights, and I couldn't wait for it to be over.

I am very lucky to have the best Mommy and Daddy who helped us every day.  Not only did they help us paint, clean, move boxes, and unpack, but they even brought us dinner every night so it was one less thing we would have to worry about.  I don't think I could've made it through the week without them.

Saturday was our big moving day.  We rented a U-Haul truck and a bunch of friends helped us load up our furniture and the rest of our boxes.  I also had a Rheumy appointment scheduled this day, so I snuck out for a little bit.  I have to admit, it was nice to get away from the house stuff for awhile...even if it was for a doctor's visit. 

Rheumy asked me how I was doing with the azathioprine, and I shared with him that it still made me feel nauseated every day.  He asked if I wanted to try something else, and I asked him what the results of my bloodwork was.  I haven't experienced any joint pain since my last visit a month ago, so if the medicine is helping, I would try to push through the nausea.  But he said that my lab work actually got worse.  My white blood cell count dropped significantly, along with my red blood cell count.  The one good sign is that my platelet count was stable, which is one thing they look for when on a medication like azathioprine.

I asked Rheumy what my other options were, and they were the same as he mentioned before.  Methotrexate would probably be the next medicine to try, but if I am thinking of getting pregnant anytime soon, it wouldn't be a good option.  It can also cause nausea and hair loss.  The other option is sulfasalazine which would only treat the joint pain and not any of the other symptoms of lupus.  Since joint pain hasn't been a problem recently and the pill has been described as a "horse pill", it wasn't a good option for me either. 

I asked Rheumy if the nausea caused by the azathioprine would go away, and he said it might, but some people are just sensitive to the medication, and it might not ever go away.  I also mentioned that we've been really busy with the house move and asked if that could have an effect on my lab results.  He did say that stress could play a factor.  We decided to keep my medication the same for another month and see how things go.  We didn't want to drop my prednisone down yet since my blood count dropped. 

Current Rx: 200 mg plaquinel, 100 mg azathioprine, 2.5 mg prednisone, 50mcg levothyroxine.

- a little lupie -

Exercise

Rheumy has told me that once I am up for it, exercise would be beneficial to my health.  Since I've been diagnosed, though, my energy level has been low, and I haven't really pushed myself to be very active.  I generally get winded after walking a few blocks or walking up one flight of stairs.  Lately, with all the stuff I've been doing around the house to get ready for our move, I've noticed that I've gotten a lot weaker.  My arms burn from carrying a load of clothes to the washer.  I need to rest after vacuuming one room.  In general, I move much slower, and it takes me longer to get things done.  I'm not sure if this is a result of the lupus or if it is just a result of my inactivity.  Maybe I need to push myself a little more, but I don't want to push myself too hard and end up flaring.  Almost seems like a catch-22...I guess it's all about balance...

- a little lupie -

Lupus Education

So if you remember, May was Lupus Awareness Month.  While there are efforts made to raise awareness of the disease, I don't feel like we are doing a good job.  I saw a few mentions of "Lupus Awareness" here and there, but a purple ribbon and/or butterfly do little to educate people about what lupus is.  It may get people to recognize the term "lupus", but I fear that many are like I was 6 months ago -- clueless about the symptoms, causes, and effects.

The scary part is that you could have lupus and not know it.  When I went to the doctor with what I thought was a stomach flu, I had no idea what lupus was.  Even after my doctor mentioned it as a possibility, I thought "Pshhh...I don't have lupus!"  I knew absolutely nothing about the disease, but I was convinced I couldn't possibly have the scary-sounding disease.  Then I went home and did some research to see what this "lupus" was all about.  After reading about some of the symptoms and relating to a number of them, the light bulb went on, and I had an inkling that it was lupus.  When I got the diagnosis a few days later, I was still a little shocked, but kind of expected it.  I was lucky that my doctor recognized the vague symptoms and tested me for it early.  For some folks it takes years of not feeling well and dozens of tests and trips to the doctor before they are diagnosed.  While no one wants to hear that they have lupus, it provides an explanation for their symptoms and allows them to start managing them.  I think that is why it is so important to increase lupus education -- people need to recognize the symptoms so that they can get the help they need.

I am trying to do my part to share my knowledge of the disease and to share first-hand experience as a lupie to educate others, but I feel like there is so much more that needs to be done.  If you get a chance, please help me spread the word about lupus!

- a little lupie -

Lupie Braxton

The other day my co-worker mentioned that she was watching Braxton Family Values, and Toni Braxton had announced to her family and the world that she has lupus.  As I was getting ready for work yesterday, I saw that the episode was on, so I got a chance to see it.

Toni had been diagnosed with lupus for a few years, but had been urged to keep it a secret because it would have a negative effect on her career.  She thought no one would want to hire her if they knew about her condition.  In fact, according to her interview with Black Enterprise, lupus is what caused her financial troubles.  She was forced to cancel her shows and break contracts because her lupus was flaring up and affecting her heart.  The doctors told her she wouldn't be able to handle the hour and a half performances.

She even kept her secret from some of her family, and they never understood why she was so lazy (in their eyes) and tired all the time.  If you watch her show, you'll notice her resting and sleeping a lot -- now we know why!

In November, she was being honored by Lupus LA and decided to reveal to the world that she has lupus.  She announced "This is what lupus looks like!"  Even with the thinning hair and steroid-induced weight gain, she looks great!  While she says it was a tough decision to come out about this, she feels it was such a relief.

Thank you, Toni, for having the courage to share your story with us and to helping to give lupus a voice!

- a little lupie -

My Daily Dose

The azathioprine was making my feel nauseated throughout the day, and that's no fun.  I've decided to change up my dosing a bit by taking my levothyroxine and prednisone in the morning and my hydroxychloroquine and azathioprine at night so that I can sleep through the nausea.  I've also started using the nifty pill box from BFF to help keep me organized and on track throughout the week.

I've been having a hard time taking my calcium three times a day.  With so much going on, I often forget about it.  I need to find a way to work it into my routine...

Hair!

I'm happy to report that my hair loss has slowed down!  I still lose some hair, but I think it is back down to normal amounts.  I feel my hair thickening up and see those little baby hairs sticking up at the top of my head!  Yay!

- a little lupie -

A Belated Rheumy Update

Yesterday I had my first Rheumy appointment since starting the azathioprine, so I was kind of anxious to see if it was working.  I was on a low dosage (50 mg), and I wasn't sure if it was making much of a difference.  I've been experiencing some stomach discomfort and nausea, especially when I don't have time to eat breakfast with my meds.  I've also still been experiencing joint pain and fatigue, although it may be because I've been busy with the house and haven't been getting my required nine hours of sleep.

My blood test results showed that my Erythrocyte Sedimentation Rate (ESR) was down to 24 mm/hr, the lowest it has been since I was diagnosed with lupus in January!  As I mentioned earlier, 20 mm/hr is considered normal for women, so I am not too far off.  My red and white blood cell counts were still a little low, but my kidney, pancreas, etc. all looked normal.

We are raising my azathioprine dosage from 50 mg to 75 mg (1-1/2 pills).  If my stomach is able to handle that over the next two weeks, then I'll raise my dosage to 100 mg (2 pills).  If I experience too much nausea or stomach upset, I should take the highest dosage I can handle.  Rheumy thinks that 2 pills should be a good maintenance dosage for me, but said that some patients take 3.

We are also lowering my prednisone dosage from 5 mg to 2.5 mg.  If you remember, the last time I tried weening off the 5 mg, I went down 1 mg at a time, and my symptoms came back when I was down to 3 mg.  The decision to cut the prednisone more dramatically is because I have been gaining a lot of weight due to it and am now above my normal pre-diagnosis weight.  We are also hoping that the azathioprine will help manage my symptoms in the absence of the prednisone.

My next visit is in 4 weeks, so let's hope I keep showing improvement!

- a little lupie -

Okay?

First of all, let me say that this does not mean I'm not okay when I say "I'm okay."  Most of the time, I really am okay.

Even if you're not suffering from a chronic condition, I'm sure you can relate to the "I'm okay" automatic response when someone asks how you are doing.  We live in a culture where it is more of a rhetorical salutation rather than a genuine question.  Most times you don't really even wait for a response.  Sometimes you really don't want to hear about all of the person's problems, as you are probably dealing with a bunch of your own.

Sometimes saying "I'm okay" is just easier...but it is always nice to get a hug and know that someone understands without you having to say anything and that sometimes it is okay to not be okay.
 
- a little lupie -

A Lupie Home

Now that the deal is done, I can finally share the news that we bought a new home!  It has been a dream of ours for a while, but it all happened so suddenly and quickly.  We had a relatively short close, so our days were packed with paperwork, inspections, planning, and daydreaming.  Because of my lupus, I tried to stay calm and not get too stressed.  It is almost ironic to stress about not stressing.  I just knew I didn't want to break out in hives like I did the week before our wedding.  I think I've done a good job of staying organized, relying on help from others, and not worrying about the little things.

As we look at moving into the home and evaluate some of the changes we need to make, our decisions are already being affected by my condition.  We are looking ahead at changing the step-in tub into a walk-in shower with a seat and grip bars.  I'm a little torn because it might be nice to have a bathtub to soak in to help ease joint pain.  Our bathroom is not big enough for both, so it is something we'll need to think about a little more.





There are also little choices that we've already made such as choosing door levers instead of door knobs, which are hard for me to grasp and turn.  They're a little more expensive, but worth it in the long run.







As we think about our fixtures, there are things I know I want to avoid...like this faucet (which we have in our current rental).  It is really hard for me to turn on when my joints are acting up.

Sometimes I feel like lupus is like my body getting old at an accelerated pace.  Some of these choices are things that most people think about as they get older, but they are rarely the concerns of a 30-year old.

We are very excited about our new home and can't wait to move in and get settled.  More updates are sure to come!

- a little lupie -

Sleepy Lupie

A while ago I posted that I implemented a 10:30 bedtime so that I can get 8 hours of sleep, but that still didn't seem like enough.  I've been trying to get 9 hours of sleep, and I feel much better in the mornings.  On weekends I'll sleep a little longer and even get some naps in.  Sleeping makes me feel better, but it also makes me feel lazy...like I don't have time or energy to do anything else.

I've noticed the spoon theory coming into effect more.  If there is an event coming up, I need to make a conscious effort to save up some spoons for it.  If I overdo it one day, I need to make time the next day to recover.

- a little lupie -

One Lucky Lupie

Have I mentioned how wonderful my lupettes are?!  I really am lucky to have such a great support group around me.  I have aunties who travel the world and bring me back seaweed from Korea to help with my hair loss and meltaway pain relievers from Sydney because I can't swallow pills.  Friends and family constantly ask how I am doing, and I am always happy to hear that people are reading my blog :)

Remember my bestie?  We went out for her birthday today, and she bought me a gift!  Even though we haven't spent much time together in the past couple months, she always knows just what I need.  Back in January when I first got diagnosed, there were a number of things I wanted to get -- a pill box, a book on lupus, and a pillow to help me sit up in bed.  Without even mentioning any of this to her, I get a lupie grab bag of exactly that and a bunch of other lotions and ointments to help me with my joint pain.

I had been coming to terms with the fact that a cane would help me on days when the joint pain in my knees and toes make it difficult to walk, and today, bestie gave me a cane!  She didn't just go out and pick out any cane...as is typical with her, she did research on how to fit a cane, different handle styles, and even took into account how "fashionable" it was.  I didn't know so much went into buying a cane!  She even talked to other cane users to learn about what characteristics to look for.  After a week and a half of visiting stores and doing research, she got me an adjustable offset handle walking cane with a cushioned grip and strap.  She is always so thoughtful (Though I joked with her that where our gifts once consisted of makeup and cute tops, we have moved on to pill boxes and canes.  My last gift to her was a floor cleaner.  Not the most glamorous gifts, but practical and very much appreciated!).

I also want to give a shout out to all the other lupettes out there.  I appreciate all the concern you have shown and the time you have taken to learn more about lupus.  I really am one lucky lupie!

- a little lupie -

Maybe Not So Super...

My husband used to always wonder why I never seemed to catch his colds, and I would jokingly reply by putting my hands on my hips, striking a pose, and saying it was because of my..."Super Immune System!"

When I got diagnosed with lupus, I realized that I did, in fact, have an over-active immune system...however, maybe it wasn't so "super".  Lupus is an autoimmune disease meaning that the body attacks itself.  Your immune system is supposed to help fight the "bad" things in your body, but with autoimmune disease, it starts attacking the "good" things too.

The new medication I am starting is azathioprine.  It is an immune-suppressing drug which will try to calm my immune system and keep it from attacking my own body.  The danger, of course, is that if it suppresses my immune system too much, I am at a greater risk of infection and cancer.

I am starting at a low dose (50 mg) and will be slowly ramping up to the necessary dosage (not sure what that will be yet).  Rheumy wants to start really low since I am heterozygous for a gene that could lead to excess drug toxicity and land me in the hospital.

Another worry I have about starting the medication is that common side effects of the drug are nausea, vomiting, diarrhea, and stomach pain...none of which sound fun at all.  I waited until the weekend to start the medication so that I would be in the comfort of home in case I suffered from these side effects, and other lupies have suggested taking the medication at night so that you can sleep through the nausea.  I have been feeling slight nauseated the past week, and continue to these past few days, but it is hard for me to tell if it is from the medication or not.  Either way, it is not too bad, and I haven't experienced any vomiting.

I'm hoping that the medicine will help balance my immune system and allow me to get off the prednisone.  It may take a few months before we see any results, but I'm keeping my fingers crossed!

- a little lupie -

So, I don't wanna brag, BUT...

...really, I do!

I swallowed all of my pills this morning...including my two hydroxycholoquine tablets!  Yay me!  Now that I was able to do it once relatively painlessly, I'm hoping it'll help me continue to do so.  Hopefully next time it will take me less than ten minutes...

- a little lupie -

So Proud of Myself!

I took my first dose of azathioprine this weekend, and I am proud to say...I swallowed the pill! For anyone who has watched me try to take medicine, you know this is no small task. It usually takes me 10-15 minutes as I sit staring at the pill and try to visualize swallowing it, even doing some practice gulps. Even if I crush the pill or chew it, I need to psych myself up to dealing with the taste and gulping it down. I am getting sick of chewing my hydroxychloquine pills, and just the taste of it initiates the gag reflex these days. It has gotten to the point where I need to gag before I can even swallow the chewed pill.

Over the last few months, I've been able to swallow my prednisone regularly, my levothyroxine sometimes, and now my azathioprine a couple times. It is progress! I'm hoping to master these three small pills soon so that I can "graduate" to swallowing my hydroxychloquine without chewing.


- a little lupie -

Rheumy Time

The joint pain has been acting up the past few weeks, and rheumy wasn't surprised based on the high sedimentation rate seen in my blood work. 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. My latest blood test was 45 mm/hr, but rheumy says that the rate is probably slightly elevated because of my anemia. Even normalized for the anemia, however, it is still high.

The joint pain in my knees was back this past weekend. The pain is so bad that it feels as though I can't even handle the weight of my body. It makes it difficult to sit, stand, and walk. I've finally come to terms with the fact that I may benefit from using a cane when this type of pain acts up.

Rheumy asked me if I had given thought as to the additional drugs we had discussed at the last appointment (azathioprine or methotrexate). I told him that between the two, I was leaning towards azathioprine. Rheumy said that there was one more option, sulfasalazine. The drug is is more often used for arthritis, and since that seems to be my biggest symptom right now, it would help with the inflammation and joint pain. The down side is that it wouldn't help with any of the other lupus symptoms if they came up. If I were to flare and there was other organ involvement, I'd need to start another medication in addition to the sulfasalazine. Also, a huge deterrent for me is that they are huge pills and I may need to take up to six a day.

In the end, I decided to go with the azathioprine. Some of the side effects are stomach pain and nausea, so rheumy suggests waiting until the weekend to start taking the medication (in his words, "you don't want to go out and be throwing up everywhere" -- nice...). We are starting with a very low dose due to the fact that I have a gene that doesn't metabolize the drug properly, so hopefully this decreases the chance of side effects I might experience.

I picked up the medicine from the pharmacy and was relieved to see that the pills are relatively small. Bigger than my prednisone and levotyroxine, but smaller than my hydroxychloroquine. The pharmacist also confirmed that it would be okay to crush or chew the pills.

On the bright side, my blood tests indicate that my kidneys and liver are doing okay. My next visit is in four weeks, so hopefully we'll see some improvement.

- a little lupie -