Decoding the BMP

A few weeks ago, we decoded the CBC. We'll continue on with another common blood test, the Basic Metabolic Panel (BMP), also known as "Chem 7". If you watch as much TV as me, you'll probably recall hearing doctors on Grey's Anatomy and ER order a "CBC, Chem 7".

The Basic Metabolic Panel (BMP) is a frequently ordered panel of tests that gives your doctor important information about the current status of your kidneys, blood sugar, and electrolyte and acid/base balance. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed.

If you take any medicines, such as diuretics for high blood pressure, your doctor may order a basic metabolic panel to see if the medicines are affecting your kidneys or your electrolytes. Your doctor also may order this panel as part of a regular health examination or to help diagnose a medical condition. You may be asked to stop eating and drinking for 10 to 12 hours before you have this blood test.

The BMP includes 8 tests (perhaps why "Chem 7" is an outdated term?):

1. Glucose (GLUC)

2. Calcium (Ca)

Electrolytes:
3. Sodium (Na)
4. Potassium (K)
5. Carbon Dioxide (CO2)
6. Chloride (Cl)

Kidney Tests:
7. Blood Urea Nitrogen (BUN)
8. Creatinine (CREA)

Each of these items play a very important role in your body's functions. I'll go into detail in future posts to explain each one a little more. Big, long posts filled with medical jibber jabber can be boring, so I'll try to keep them short from now on...


- a little lupie -

The Best Medicine

This past week was full of lunches and dinners with family and friends.  It was nice seeing my family and catching up with some friends I hadn't seen in a while.  It got me back to feeling "normal" again.  My mom asked me the other day how I would define "a good day."  While a day free of pain or fatigue is nice, I think I feel the best after spending some good QT with family and friends...they really are the best medicine ♥

- a little lupie -

Predictably Unpredictably

If you know me, you know that I am a planner. Before going on a trip, I will spend months researching places to eat and things to see. I'll create spreadsheets with information including addresses (and of course a map and driving directions), phone numbers, websites, hours of operation, and any other things that might be important. I'll put together an itinerary and have a nice portfolio of information before we even leave on our trip. For our last family trip, I even put together a website to share the information and keep my family updated.

So, you can imagine how hard it is for me to have a medical condition as unpredictable as lupus. Not only is it different for each person, but it constantly presents its host with new symptoms and hits suddenly with little to no warning. The information provided by doctors and medical books/websites is vague and limited because it is a disease that is very hard to define. I've learned a lot by reading the words of other lupies.  Sara Gorman (author of the book I am reading) wrote a post on her blog that reminds me of just how vast and various lupus is.

I try to arm myself with as much information as I can so that I can prepare myself for the "trip" ahead, but sometimes I just need to learn to embrace the spontaneity of lupus.


- a little lupie -

A Hairy Situation

A few months ago I was freaking out over a few white hairs I found on my head.  I would proceed to pull them out as quickly as I could and complain about getting old.  Now, I would give anything for some white hairs...as long as they stay on my head!

Alopecia is one of the symptoms of lupus and a possible side-effect of the medications I'm taking.  I am constantly shedding hair and can visibly see the hair on my head thinning out.  I keep trying to part my hair differently to make it look not so thin and try to avoid touching my hair too much throughout the day to avoid upsetting some hairs that are on the verge of falling out.  Taking a shower is especially upsetting because after I shampoo my hair, my hands will be covered with hair and the drain will have a huge ball of hair in it.  When I wake up in the morning, there are literally a hundred hairs on my pillow.  I constantly see little pieces of my femininity scattered all over the floor...on my desk...in my food...everywhere!

I've never thought my hair was that important to me.  I would tell hairdressers to do whatever they wanted to it -- I always just thought, "it'll grow back".  But now with the possibility of me losing it all, I'm quite distraught about it.  I had a dream one night where my hair was coming out in clumps.  I was really upset, and it seemed like the worst part of having lupus.  Perhaps it's because it is the most visible physical change.  The joint pain, fatigue, nausea, etc. are for the most part invisible to others, but something like losing your hair is like telling the whole world, "I'm sick!"

I talked to Rhumey about it, and while he said that many patients -- especially women -- find this a difficult symptom to deal with, there really isn't much we can do about it.  There is a good chance that the hair will eventually grow back, but for now I just need to accept it.  Let's just hope it's not a case of "hair today...gone tomorrow..."

- a little lupie -

Reverse-Diagnosis #2

Okay, I know I shouldn't self-diagnose myself anymore, but I can't help doing a little "reverse-diagnosis" (I am becoming quite adept at making up my own words and terms these days). By this I mean, now I have a diagnosis - Lupus - and I keep thinking back about the possible symptoms and signs I may have had but brushed off (Raynaud's is my Reverse-Diagnosis #1).

For example, now that I am learning more about lupus, I see that frequent nose bleeds are a common symptom. Back in college, I started suffering from spontaneous, really heavy nose bleeds. They would occur suddenly...I wouldn't even touch my nose or blow my nose, and it would start gushing out. And I mean GUSHING. I would have to stand over the sink for about half an hour before it stopped. People would always try to give me advice like hold my nose and tilt my head back, but because it was flowing so hard, all this resulted in was me gagging on the blood clot and it coming out of my mouth. I know, TMI. It happened frequently and I always just blamed it on the dry air, but now I am wondering if it had anything to do with lupus. They weren't normal nosebleeds like I used to get as a kid...they were heavy and would come out with huge chunks of jelly-looking coagulated blood. I know, TMI again, but I guess that comes standard with reading a blog about a medical condition? Anyway, they have become less frequent after getting my nose cauterized and moving to a warmer, more humid climate. I still wonder if the heavy bleeding and how long the nosebleeds lasted has anything to do with a low platelet count caused by lupus.

- a little lupie -

Tastes Like Candy!

After my Rhumey appointment, I went to Costco to pick up my calcium chews and multi-vitamins.

As I've mentioned before, I have some problems swallowing pills, so I'll always look for alternatives. While taste may seem like a petty thing to worry about when taking medications/supplements, it really does make a big difference. It can mean the difference between wanting to take your medicine and dreading it. It may even mean the difference between taking your medicine or not. I applaud these companies who have worked to make good-tasting alternatives to pills.

I've tried different chewable vitamins, but my favorite is L'il Critters Gummy Vites.

I buy them at Costco for about $10 (for 220). This month there was a coupon for $2 off.  It is not a complete multi-vitamin and does not have any iron, but it is better than nothing. Also, it is meant for kids, so it does not provide 100% of the recommended daily value for adults. I don't know if I should, but I double the dosage and take 4 a day. They taste just like regular gummy bears, so I don't mind taking it. I've tried the new gummy vitamins for adults, but don't like the taste as much (they sell this at Costco also). I figured I'd go with the one that tastes better, because if I don't like the taste of it, it'll make taking my vitamins more of a pain. With my gummy vites, it is almost like a treat. They also make gummys for calcium, vitamin C, fiber, etc. but they taste a little different. I tried a sample of the calcium gummy but didn't care for the taste (it is creamy). I might give the Omega-3 gummies a try, though, since I've read that Omega-3 can improve lupus symptoms.

I also picked up Kirkland Signature Calcium Chews. I had tried Viactiv before, and while they were good, they are also expensive. I had heard good things about the Kirkland Signature chews, and they were cheaper, so I went with those. They are about $12 for 180 chews.  I just tried one and it tasted just like a tootsie roll. I won't mind taking these either.

I also wanted to talk a little bit about when and how to take calcium supplements because I know many people take them. In fact, my OB/GYN was telling me to take them even before I got diagnosed with lupus. She recommended 1200 mg/day, which is pretty standard for normal adults. The things I didn't know until I researched more were:

- It is a good idea to split your calcium into smaller doses throughout the day because your body can absorb only 600 milligrams of elemental calcium at a time.

- Iron supplements can interfere with calcium absorption, so it should be taken at least two hours before or after to maximize the absorption of both iron and calcium.

- Too much calcium (over 2,000 milligrams a day of elemental calcium) may pose problems for your kidneys. If you have had kidney stones or have a family history of them, talk to your doctor before taking calcium supplements.

- Vitamin D, Vitamin K, Magnesium, and Boron aid in the absorption of calcium and can help prevent bone loss.


- a little lupie -

Another Rhumey Visit

I went for my regular 2-week check-up with Rhumey this morning, and looks like things are going pretty well. I haven't experienced any new symptoms since my last visit and the swelling in my joints has gone away. The only symptoms I've had in the past two weeks is fatigue and some stomach pain (which may have been because of something I ate). Since I went down to 7.5 mg of prednisone, I haven't experienced heart palpitations.

Other than just my symptoms getting better, my blood and urine tests show improvement. I am still anemic (low red blood cell count), but Rhumey says that is common with auto-immune disease because all the inflammation causes red blood cell production to slow down. My amylase and lipase levels show that my pancreas is still a little inflamed, so we'll continue to watch that. My white blood cell count is back into the normal range, and my kidney function is improving. This is a good sign because it indicates that my low kidney function was probably due to dehydration and not to lupus nephritis. Lupus nephritis doesn't get better on its own, and would require stronger medication than what I am currently on. He also mentioned that the cells would look different (or something like that), and mine appear normal.

My list of questions for him wasn't as long this time, but I did ask if he would monitor my thyroid level since I was regularly getting blood tests through him every couple weeks. I usually see Dr. C to monitor my thyroid, but that would mean an additional doctor appointment and an additional blood test. Dr. K said we could do that, so that'll save me time and money.

My next question was if I needed a DXA Scan to check my bone density levels. Bone density is a concern because the prednisone I am on is known to cause osteoporosis. Dr. K said it wasn't necessary because (1) my insurance wouldn't cover it (unless I was on more than 7.5 mg of prednisone for over two months), and (2) even if it did show low bone density, we probably wouldn't treat it right now anyway. Dr. K explained that most osteoporosis medications are for post-menopausal women. Many of the medications can stay in the body long after you stop taking it, and it can have negative effects on pregnancy and baby's development, so they normally don't prescribe it if you are pre-menopausal. That's why it is so important for me to take calcium supplements (which he told me at my first appointment, but I hadn't been able to get to Costco to buy my calcium chews).

I also asked how I would know if/when the hydroxycholroquine (plaquenil) was working, since he said it can take a couple months before it starts working. He said I probably wouldn't be able to tell, especially while taking the prednisone. Once I get off the prednisone, if it seems like my symptoms are being managed, the plaquinil is probably working. If my symptoms come back or get worse, we'll have to try a different medication. I've read that with lupus, medication is a lot of trial and error...they're not even sure how or why plaquenil (an anti-malarial drug) helps lupus and RA patients, just that it does.

We did lower my dose of prednisone to 5 mg. Yay, that means one less pill to swallow! He did warn me that although we are dropping it by the same quantitative amount (2.5 mg), it was decreasing the dosage by a greater percentage (33% vs. 25% the last time), so I might see some symptoms coming back. Because my body was getting what it needed from the synthetic corticosteroid, my adrenal glands are probably suppressed because they weren't needed. Now that I am below 7.5 mg, my body will need to produce some on its own. It may take 3-5 days for my body to tell my pituitary gland to tell my adrenal glands to start producing more hormones. While that happens, I may experience withdrawal symptoms such as fatigue, nausea, vomiting, dizzyness, and body aches. Sounds suspiciously like my lupus symptoms...Dr. K said it can be hard to distinguish the two, but the withdrawal symptoms should go away in 3-5 days. If I am feeling symptoms after a week, it is probably the lupus, and I need to call him.

I didn't have to do lab work today (yay!), but he said we'll do tests when I come back in two weeks. If the lab tests come back good and I'm still feeling okay, we can start spacing out my appointments a little more (double yay!). Hope my next visit to Rhumey shows even more improvement!

- a little lupie -

Self-Diagnosis

When I first moved up to the mainland for college, I discovered just how cold it was. For a freshman service project, we had to go clean up a trail in the mountains. I was freezing and could barely do anything because my fingers and toes were burning with pain and numb at the same time. I looked around and wondered how everyone else was working through the cold.

I experienced this sensation a lot. My fingers would turn white and under my fingernails would turn blue. I googled "frostbite" to see if that is what happened to me. It was really painful and made it difficult for me to do anything with my hands or feet. It hurt to walk in the cold. If I was in a room that wasn't well-heated, I couldn't type on my computer -- I would alternate typing with one hand while sitting on the other hand to warm it up. It was also difficult shopping in the refrigerated section of the grocery store.

Gloves didn't help, but I discovered disposable hand-warmers sold in bulk at Costco during the winter, so that became a staple for me. I always had a pair in my pockets and would carry them with me everywhere.

Then one day a couple years later, I was reading a magazine with a Q&A section to a doctor. A reader had the same symptoms as I did and the doctor said it was probably Raynaud's Disease. I jumped on the computer to find out more about it. After reading about it and seeing pictures, I was pretty sure that is what I had. While it can be triggered from stress or other factors, the most common trigger is the cold. Your body's normal reaction to being cold is for your body to narrow blood vessels to the skin and open the blood vessels to the inside of the body to keep the body warm. With Raynaud's, the body overcompensates for the cold and cuts off blood supply to the fingers and toes (sometimes nose and ears too). There is no cure for the phenomenon, but the website suggested ways of trying to prevent it from being triggered -- wear warm clothes, wear gloves, run your hands under warm water, move to a warmer climate, etc. I self-diagnosed myself with it, but never bothered seeing a doctor about it because the websites I had read said that it is more of a nuisance than a disability.

(My Raynaud's looks more like the top pictures with the white fingers.  Under my fingernails turns slightly blue sometimes, but never as bad as the bottom pictures.)

So here's the problem with self-diagnosis...you might miss the big picture. While reading about Raynaud's online, I discovered that there are two types: primary and secondary. Primary Raynaud's is known as Raynaud's Disease and occurs on its own. Secondary Raynaud's is known as Raynaud's Syndrome, and it most often forms as part of another disease, usually after age 35. Well, being that I was still in my lower 20's and didn't have any of the "weird" diseases it mentioned -- scleroderma, rheumatoid arthritis, LUPUS, etc. -- I jumped to the conclusion that I had primary Raynaud's Disease. I didn't even think of the possibility that this was a symptom of a more serious disease and a sign that I should see a doctor to get tested.

So, it is likely that there have been many signs along the way pointing me towards lupus, but I chose to ignore or overlook them. I've always been one who would put off going to the doctor and just wait things out until they got better. Now that I've been diagnosed with lupus, I've been instructed to see the doctor immediately when I don't feel well.  No more jumping on the Internet to self-diagnose myself...

- a little lupie -

Dream Interpretation

I was talking to my mom about my stressful dreams, and while describing it to her I think I uncovered the meaning behind it.  Or maybe I am overthinking it and trying way too hard to convince myself that it has some hidden meaning.

Anyway, to go a little more in-depth about the dreams...the situations were a little different, but in two of them, I have a whole room of stuff to pack in a short amount of time.  I'm in a really big hotel room or something so whatever I don't pack gets left behind.  The items in the room are not just clothes and toiletries...there are photo albums, a Christmas tree decorated with all the ornaments I've collected over the years, and all kinds of other momentos.  On top of that, I don't have a suitcase so I'm scrambling around looking for bags or containers to pack my stuff in.  So I'm running around like a chicken with her head cut off trying to gather as much as I can.  I'm forced to take a quick scan of everything, determine what is important to me, and leave the rest behind.

So I think you see where I'm going with the symbolism of this dream.  As I reach this time of transition in my life (hitting the big 3-0, recently married, my new diagnosis, etc.), I need to evaluate all the things I carry with me.  I need to realize what really matters and get rid of the rest.  Sometimes what's truly important may be something small that I had never paid much attention to before (in my dream, it was a particular Christmas ornament that held special memories, and I wanted to continue the tradition of hanging it on my tree each year).  At the same time, there are a lot of things that I can let go of, because although they seemed so important at one time in my life, they really don't matter in the big scheme of things.  There are things, both physical and emotional, that I've held on to for so long and now it is just time to let it go.

But then again, maybe it was just my meds and it meant nothing at all.  Either way, I guess I got something out of it...other than just a restless sleep...

- a little lupie -

Stressful Sleeps

Since stress can trigger a lupus flare, I've been trying to take it easy and avoid stressful situations.  For the past three nights, however, I have been having stressful dreams.  The two I can remember had to do with having to pack up a lot of stuff (like we were moving) in a few hours.  I am so stressed out in these dreams, and when I finally wake up in the morning, I don't feel rested at all.  I've been trying to think about what these dreams could "mean" and how my subconscious could be trying to tell me something, but I really can't relate to anything going on in my life right now.  I wonder if it is a side-effect of the medication I am taking?

- a little lupie -

Lazy Lupie

It was a lazy and enjoyable weekend.  I took the opportunity to sleep in and not have to worry about waking up early for work or doctor's appointments.  I had plans to catch up on errands and housework, but none of that happened.  Instead I worked on creating a blog for my non-lupie life.

I have lupus, but lupus doesn't have me.

- a little lupie -

Lupie or Loopy?

I had a hard time concentrating at work today.  I was working on some spreadsheets and none of my numbers were tying.  After going over it and over it for a while, I finally realized I had pulled 2010 data instead of 2011.  Then I had to input numbers and I put it in the wrong column.  My short-term memory was really bad and I had to keep looking back to see what number I wanted to input.  I kept pressing cntl-B when I meant to press cntl-V.  Usually I am pretty good at these things, but today I just felt off.  I must've had to redo my work like 5 times.  Can't figure out if I can blame this on the lupus or if I was just having a loopy day...

- a little lupie/loopy? -

Lupie Goodies

We went to dinner with one of my besties (my real bestie, not my BFF rhumey...), and she had a bunch of get well goodies for me! I was touched that she took the time to learn more about lupus and find things for me that she thought would help me.

One of the things in the goodie bag was Sara Gorman's book, Despite Lupus. If it sounds familiar, it is the same author as one of the lupus blogs I follow. I went to Borders the other day to find a lupus book, and they didn't have any, so this is perfect!

She also got me a 7-day pill planner pill box to help me with all my new medications and some various creams and supplements to help with my joint pain. One of the items is an emu oil that her grandma with arthritis swears by. Has anyone else heard of this? The bottle says it is a natural anti-inflammatory anti-bacterial and anti-fungal agent that brings relief to a list of things, including rheumatism.

For my birthday gift, she got me an awesome memory foam bed wedge because she had read about how important it is for me to have a comfortable, nice place to rest. I've been spending a lot of time in bed and was thinking about buying one...it's amazing that she thought of it without me ever mentioning it to her. Guess that's why she's my bestie :)

 
 

- a little lupie -

Status Update

I don't want to jinx it, but I've been feeling good the last few days. I have more energy and feel back to my old self. Since the doctor lowered my prednisone dose a little, I haven't had those scary heart palpitations. Hopefully I'll be able to get off of it completely soon.

I feel back to normal, but since I probably had lupus before I was diagnosed, how normal is MY normal???

- a little lupie -

Decoding the CBC

Being the diligent lupie that I am, I asked for copies of my blood test results.  But now I am stuck with stacks of papers that are Greek to me.  I was able to get some information online to help me interpret my test results and thought it might be helpful to post here...especially because I'll be getting pretty familiar with these tests and what they mean over the next few years.

Today I'll cover the Complete Blood Count (CBC) -- the one you always hear them ordering on Grey's Anatomy and ER.  This is the most common blood test and measures your white blood cell, red blood cell, and platelet counts to flag for any abnormalities outside the normal range. The CBC tells you and your doctor a great deal about your current health state and can highlight anything that requires attention. The CBC can help detect blood diseases and disorders, such as anemia, infections, clotting problems, blood cancers, and immune system disorders.

A complete blood count may be done to:

• Find the cause of symptoms such as fatigue, weakness, fever, bruising, or weight loss.
• Find anemia.
• See how much blood has been lost if there is bleeding.
• Diagnose polycythemia.
• Find an infection.
• Diagnose diseases of the blood, such as leukemia.
• Check how the body is dealing with some types of drug or radiation treatment.
• Check how abnormal bleeding is affecting the blood cells and counts.
• Screen for high and low values before a surgery.
• See if there are too many or too few of certain types of cells. This may help find other conditions, such as too many eosinophils may mean an allergy or asthma is present.

Code	Description	Normal Range*	Units
WBC	White Blood Cell (WBC) count measures the actual number of white blood cells per volume of blood. White blood cells protect the body against infection. If an infection develops, white blood cells attack and destroy the bacteria, virus, or other organism causing it. White blood cells are bigger than red blood cells but fewer in number. When a person has a bacterial infection, the number of white cells rises very quickly. The number of white blood cells is sometimes used to find an infection or to see how the body is dealing with cancer treatment. The major types of white blood cells are neutrophils, lymphocytes, monocytes, eosinophils, and basophils. Immature neutrophils, called band neutrophils, are also part of this test. Each type of cell plays a different role in protecting the body. The numbers of each one of these types of white blood cells give important information about the immune system. Too many or too few of the different types of white blood cells can help find an infection, an allergic or toxic reaction to medicines or chemicals, and many conditions, such as leukemia.	3.8-10.8	10^3/microL
RBC	Red blood cell (RBC) count measures the actual number of red blood cells per volume of blood. Red blood cells carry oxygen from the lungs to the rest of the body. They also carry carbon dioxide back to the lungs so it can be exhaled. If the RBC count is low (anemia), the body may not be getting the oxygen it needs. If the count is too high (a condition called polycythemia), there is a chance that the red blood cells will clump together and block tiny blood vessels (capillaries). This also makes it hard for your red blood cells to carry oxygen.	3.6-5.4	10^6/microL
HGB	Hemoglobin (HGB) measures the amount of oxygen-carrying protein in the blood. The hemoglobin molecule fills up the red blood cells. It carries oxygen and gives the blood cell its red color. The hemoglobin test measures the amount of hemoglobin in blood and is a good measure of the blood's ability to carry oxygen throughout the body.	12.0-16.0	g/dL
HCT	Hematocrit (HCT) measures the percentage of red blood cells in a given volume of whole blood. This test measures the amount of space (volume) red blood cells take up in the blood. The value is given as a percentage of red blood cells in a volume of blood. For example, a hematocrit of 38 means that 38% of the blood's volume is made of red blood cells.	36.0-48.0	%
MCV	Mean corpuscular volume (MCV) measures the average size of your RBCs.	82-101	fL
MCH	The Mean corpuscular hemoglobin (MCH) value measures the amount of oxygen-carrying hemoglobin in an average red blood cell.	26.0-34.0	pg
MCHC	Mean corpuscular hemoglobin concentration (MCHC) measures the concentration of hemoglobin in an average red blood cell. These numbers help in the diagnosis of different types of anemia.	32.0-36.0	g/dL
RDW	Red blood cell distribution width (RDW) imeasures the variation in the size and shape of the RBC population.	0.0-14.4	%
PLT	The platelet count (PLT) is the number of platelets in a given volume of blood. Platelets (thrombocytes) are the smallest type of blood cell. They are important in blood clotting. When bleeding occurs, the platelets swell, clump together, and form a sticky plug that helps stop the bleeding. Both increases and decreases can point to abnormal conditions of excess bleeding or clotting. If there are too few platelets, uncontrolled bleeding may be a problem. If there are too many platelets, there is a chance of a blood clot forming in a blood vessel. Also, platelets may be involved in hardening of the arteries (atherosclerosis).	140-440	10^3/microL
MPV	Mean Platelet Volume (MPV) is a measurement of the average size of platelets. New platelets are larger, and an increased MPV occurs when increased numbers of platelets are being produced. MPV gives your doctor information about platelet production in your bone marrow.	0.0-99.9	fL

* "Normal" values vary depending on the laboratory and take your age, sex, weight, and other factors into consideration.  You should always consult with your doctor to interpret blood test results.  The values shown above are what was indicated on my most recent blood test.


If your test results fall outside of the normal range, it may be an indication that something is wrong.

Code	High Values Indicate	Low Values Indicate
WBC	Conditions that cause high WBC values include infection, inflammation, damage to body tissues (such as a heart attack), severe physical or emotional stress (such as a fever, injury, or surgery), burns, kidney failure, lupus, tuberculosis (TB), rheumatoid arthritis, malnutrition, leukemia, and diseases such as cancer. The use of corticosteroids, underactive adrenal glands, thyroid gland problems, certain medicines, or removal of the spleen can also cause high WBC values.	Conditions that can lower WBC values include chemotherapy and reactions to other medicines, aplastic anemia, viral infections, malaria, alcoholism, AIDS, lupus, or Cushing's syndrome. A large spleen can lower the WBC count.
RBC	If the RBC count is too high (a condition called polycythemia), there is a chance that the red blood cells will clump together and block tiny blood vessels (capillaries). This also makes it hard for your red blood cells to carry oxygen. Conditions that cause high RBC values include smoking, exposure to carbon monoxide, long-term lung disease, kidney disease, some cancers, certain forms of heart disease, alcoholism, liver disease, a rare disorder of the bone marrow (polycythemia vera), or a rare disorder of hemoglobin that binds oxygen tightly. Conditions that affect the body's water content can also cause high RBC values. These conditions include dehydration, diarrhea or vomiting, excessive sweating, severe burns, and the use of diuretics. The lack of fluid in the body makes the RBC volume look high; this is sometimes called spurious polycythemia.	Anemia lowers RBC values. Anemia can be caused by heavy menstrual bleeding, stomach ulcers, colon cancer, inflammatory bowel disease, some tumors, Addison's disease, thalassemia, lead poisoning, sickle cell disease, or reactions to some chemicals and medicines. A low RBC value may also be seen if the spleen has been taken out. A lack of folic acid or vitamin B12 can also cause anemia, such as pernicious anemia, which is a problem with absorbing vitamin B12. The RBC indices value and a blood smear may help find the cause of anemia. If the RBC count is low (anemia), the body may not be getting the oxygen it needs.
HGB	Mirrors RBC - Hematocrit and hemoglobin values are the two major tests that show if anemia or polycythemia is present.	Mirrors RBC - Hematocrit and hemoglobin values are the two major tests that show if anemia or polycythemia is present.
HCT	Mirrors RBC - Hematocrit and hemoglobin values are the two major tests that show if anemia or polycythemia is present.	Mirrors RBC - Hematocrit and hemoglobin values are the two major tests that show if anemia or polycythemia is present.
MCV	The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in anemia caused by vitamin, folate, or B12 deficiency.	When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron deficiency anemia or thalassemias.
MCH	Mirrors MCV Results	Mirrors MCV Results
MCHC	Increased MCHC values (hyperchromia) are seen in conditions where the hemoglobin is abnormally concentrated inside the red cells, such as in burn patients and hereditary spherocytosis, a relatively rare congenital disorder.	Decreased MCHC values (hypochromia) are seen in conditions where the hemoglobin is abnormally diluted inside the red cells, such as in iron deficiency anemia and in thalassemia.
RDW	Increased RDW indicates mixed population of RBCs; immature RBCs tend to be larger.
PLT	High platelet values may be seen with bleeding, iron deficiency, some diseases like cancer, or problems with the bone marrow. If there are too many platelets, there is a chance of a blood clot forming in a blood vessel. Also, platelets may be involved in hardening of the arteries (atherosclerosis).	Low platelet values can occur in pregnancy or idiopathic thrombocytopenic purpura (ITP) and other conditions that affect how platelets are made or that destroy platelets. A large spleen can lower the platelet count. If there are too few platelets, uncontrolled bleeding may be a problem
MPV	An increased MPV occurs when increased numbers of platelets are being produced. MPV gives your doctor information about platelet production in your bone marrow.	Vary with platelet production; younger platelets are larger than older ones.

- a little lupie -

Lupie and the Lupettes

Only a day after I started sharing my blog and news about my condition with family and friends, I've gotten a lot of positive feedback.  I've decided to make up my own word and call these people -- my support system --"lupettes".  While these people don't have lupus, lupus doesn't just affect the individual with the disease...it affects the people around them as well.  So, while they are not "lupies", they are tied to the disease and deserve a cute name too... :)

So, lupettes, I wanted to thank you for your feedback and comments, both on the site, through e-mail, and in-person.  It's good to hear that others want to learn more about the disease and are willing to go on this journey with me.  Mommy Kristi reminded me that it is these difficult times that make us stronger and bring us closer.  I was almost brought to tears when SC said that I reminded her of Popo (my hero).  It also hit me when she said that it is okay to feel angry or frustrated sometimes.  I try to stay positive and keep a smile on my face, but grieving and being angry is all part of the coping process too.  Still others have sent me their thoughts and prayers and reminded me that they are there to support me in anyway they can.  I am one lucky lupie!

- a little lupie -

In Sickness and In Health

Today is hubby and my first anniversary, and with my recent diagnosis, I am reminded of the vows we took -- particularly to love and cherish each other in sickness and in health.

Hubby has been wonderful, and while it sucks being sick, I have never felt so loved.  While I was at my worst (and before we knew my diagnosis), hubby took off of work to be there for me and help me with anything I needed.  When I started throwing up, he was there to take care of me and went to the store first thing in the morning to buy water, Gatorade, Jello, and chicken noodle soup.  He took care of all of the housework and disinfected the bathroom every time I used it.  The poor guy slept on the couch for a week, but I know he got up several times a night just to come check on me.

Since my diagnosis, hubby has been there to take me to my many doctors appointments, make sure I am taking care of myself, and make sure I am taking my medications regularly.  Before he leaves for work every morning, he'll put my pills for the day out on the counter for me so I don't forget to take them.  Sometimes I even get a handwritten note to remind me to drink plenty of water.  :)  These little things remind me how lucky I am to have someone who loves me and will always be there to take care of me.

When dealing with chronic conditions like lupus, the family and friends you have supporting you are just as important as the pills and prescriptions.  Thank you to everyone out there who has shown their support and concern by keeping me in their thoughts and prayers...especially to my hubby <3

- a little lupie -

Hi, Rheumy!

I went to see my BFF (my rheumatologist) today. I've been weighing myself on our digital scale at home, so I knew I gained 8 pounds since my last visit 2 weeks ago, but it makes it so much more real when you see that the nurse has to keep inching the scale to the right! I'm right around back to my "normal" weight, so I'm going to have to start watching what I eat a little more because I don't want to gain any additional weight. After 2 weeks of not being able to eat, though, eating just feels so gooood! I did ask the doctor if there is a certain diet I should follow or anything I should avoid, and he advised me to just follow a "heart-healthy diet" -- limit fat intake, eat lots of fruits and veggies, etc. So pretty much what any doctor would tell any patient. He said that alcohol was okay, but he'd prefer if I didn't (same thing Dr. C told me) -- "You're doing good now...why rock the boat?" I'm not really a drinker anyway, so that's fine with me. I did have a glass of champagne last night because hubby and I celebrated our first anniversary. Maybe it's because I knew I shouldn't be drinking it that made it taste so good.

Dr. K asked me some questions about how I've been doing and examined my joints. I still have a little bit of swelling in my joints, but most of the pain is gone. He said it looks like I'm responding well to the medication. He went over some of my test results and said that I did test slightly positive for the Rheumatoid Arthritis (RA) antibody, so that is another thing to watch. When I asked what the difference between RA and lupus was, he said that with lupus, in addition to joint pain, it also causes more widespread damage to your internal organs. With RA, it is primarily just your joints. The other difference is that lupus is non-destructive to your joints where as RA is destructive, so patients with RA can end up with permanent deformities. Based on my current symptoms and lab results, he is pretty confident that it is mainly the lupus affecting me right now, but he said that with diseases like this, it could change over the course of time.

This time I came prepared with a list of questions, so he went through them all with me. I've been trying to be more in tune with my body and made a list of symptoms and things I've noticed. He helped me sort through them and figure out what was likely due to lupus, what is a side effect of the medications I've been taking, and what is just "normal". He agreed that it is often difficult to tell exactly what is causing the symptom, but usually the treatment plan would be similar. Depending on what the symptom is, they may be able to run tests to see what the cause is.

My muscles have been a little sore lately (like I just worked out), and he said that is common because the lupus had me wiped out and in bed so long -- my muscles get a work out just from everyday use. He said not to push myself too much right now, but when I feel ready, regular exercise would be beneficial. I fell down and skinned my knee walking to my car one day. The ground was rocky and my left ankle rolled (this actually happens quite often to me -- hubby will ask what I tripped on and then turn around to see nothing there), but this time, I wasn't able to catch myself, and I skinned my knee. I think this is because of the weakness in my thigh muscles. Dr. K did say that general clumsiness is probably not from the lupus. Shucks, guess I can't blame everything on it! Forgetfulness and neurological problems, however, he said could be from lupus.

Yesterday when I was driving to work, I was looking into the sun. When I got to work and turned on my computer, I was still seeing those "sun spots" for another hour or so. I debated about calling the doctor since I knew the hydroxychloroquine I was taking was known to cause eye/retina problems. It eventually got better, and since I already had an appointment to see Dr. K the next day, I decided to just mention it today. He wants me to make an appointment with my ophthalmologist to get my eyes checked. I need to get a baseline exam and then have her monitor me every six months.

On a good note, I asked if I needed to see a kidney specialist like Dr. C recommended, and he said no. He'll be continuing to monitor me with my regular urine tests, and if it gets worse or looks like the lupus is attacking the kidneys, then we would move forward with finding a specialist. Yay! One less doctor (and bill) to add to the list.

I also talked to Dr. K about how he would be monitoring my treatment and when he would change my medications. He said that he needs to see me regularly and that every time I come in, I'd probably have to do a blood and urine test. That and his physical exams would be the best indicators of how I am doing and how I am responding to the medicines. On this visit, he lowered my prednisone from 10 mg daily to 7.5 mg daily. I hope to be off the prednisone soon. If we lower the dose and I experience more pain, we may try to add another medication.

I asked Dr. K what stage or severity he would classify my lupus in. I explained that I had been reading discussion boards and blogs online that scared me because a lot of people seem to have extreme conditions. I figured there was probably a bias towards the more severe cases because those with very mild cases probably don't feel the need to write or talk about it much, but I was still worried that this may be an example of where I was headed and what I could expect later in life. He agreed about the bias and said that there are probably also a lot of people I see walking around every day and would never know they had lupus. As far as the severity of my specific case, it can be very subjective, but he would say I am "moderate" because of the number of symptoms I have and the number of organs that are affected. He said it would be considered "severe" if the lupus started attacking the vital organs like my heart, spinal cord, and brain. Some patients who just get a rash and some joint pain might be considered "mild".

When I asked him about vitamins and supplements, he told me that I should take a multi-vitamin and calcium. This is fine with me (despite my pill-swallowing problem) because I can take the gummy bear vitamins and chocolate calcium chews from Costco. He generally advised to stay away from immune boosting supplements to help with autoimmune disease because my immune system is not hypoactive, it is actually hyperactive, and doesn't need a boost. Basically, he wants me to check with him or at least let him know if I decide to start taking anything.  He did say I should take the flu shot every year (but not the spray -- I should stay away from any live vaccines).

I've also been starting to think about how lupus affects pregnancy, but Dr. K says that could be a half-hour conversation in itself, so we'll save it for when the time comes. He did say that many lupus patients experience bad flares during their pregnancy, so there is a risk to both mom and baby. I need to be off the prednisone first and they'd like me to be symptom-free for at least 6 months before getting pregnant. One of the blood tests he ran was for anticoagulant antibodies. If you test positive for it, you are at a higher risk for miscarriage. Luckily, I tested negative for all three of those antibodies. He said that the important thing is that I am monitored closely throughout the pregnancy. I asked him about OB/GYNs who specialize in high-risk pregnancies, and he said they are called maternal-fetal specialists or perinatologists. He said there are about 6 or 7 on the island and that they could work together with my normal OB/GYN.

I had a lot of questions and spent quite a long time talking to my BFF (aka Rheumy). So much so that the nurse came to knock on the door because I think the next patient was waiting. I didn't want to take too much time because I know what it's like to be a patient waiting forever in a doctor's office, but I had to get my money's worth! I have no idea yet how much all of these doctors visits and lab tests are costing me. I saved a few questions for my next visit...I will, after all, be seeing him quite often. My next visit is in two weeks.

After my visit, I went to the lab to do more blood work and another pee test.

Sorry for the long post. I'm trying to capture everything for myself too so I don't forget what Rheumy said...

- a little lupie -

Pee Test Results

Pee test results came back today. My protein levels were okay, but my kidney function is still low, filtering at only about 64%. Dr. C wants me to see a nephrologist to monitor my kidneys. Guess I need to add another doctor to my list...

- a little lupie -

Lupus Lessons - Take 1

I know I've only been diagnosed with lupus for a short time, and I didn't even know what lupus was 3 weeks ago, but I feel like it has already changed my outlook on life.

• Lupus makes me appreciate the good days and teaches me not to take my health for granted (as I did for the past 30 years).

• Lupus teaches me to pay more attention to my body, how it reacts to different situations, and understand its needs.

• Lupus forces me to slow down and realize that I can't be Superwoman all the time...and that's okay.

• Lupus makes me re-prioritize and focus on what's really important.

• Lupus shows me what a great support system I have and makes me even more grateful for my wonderful family and friends.

• Lupus teaches me to be more empathetic and understanding of other people because I never know what issues they are dealing with.

This is just Take 1, as I'm sure there will be many more "Lupus Lessons" to come.

- a little lupie -

The Spoon Theory

A lot of people with lupus refer to Christine Miserandino's "spoon theory" as a way to explain to others what it is like living with a chronic condition. I don't think my current condition is this severe yet, but it does offer some insight as to the lifestyle changes that need to be made to accomodate for being sick and makes you think about the things you take for granted when you are healthy.

The Spoon Theory
by Christine Miserandino
www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.


- a little lupie -

What Your Doctor Couldn't Tell You...

I came across another lupie's blog where she had posted her words of wisdom about dealing with lupus and the things she wished she had known when she was newly diagnosed.  While doctors and medical books can help explain the physical and scientific aspects of having a chronic disease, they often fail to talk to you about the emotional aspects.  I found this post really interesting and hope it helps prepare me for what's to come as a continue this journey with lupus.

What Your Doctor Couldn't Tell You

- a little lupie -