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 -