I saw a new doctor (Rheumatologist, Internist, Nutritionist) on Wednesday. I’m not sure what I think. Johnny will be going with me to my next appt, and asking his own questions to settle his own mind, then we’ll decide.

I am really more comfortable with the conventional treatments than with what this guy offers, but if he can set mine and Johnny’s minds at ease, we’ll move forward with him.

I did my labs for him today (a blood test and urinalysis)… it took 3 pokes this time to get into a vein, and then the blood was moving so slowly that she had to take off the one vial and put on another, and got the amount between the two. It hurt pretty bad too… I’m expecting bruises on at least one any time, though since she couldn’t get into that vein, it may not bruise?

Idk… we shall see what we shall see.

This morning was spent on E’s and my health. We both had appts at our PCPs office to get our labs run. E is having the normal works…. CBC, Complete Metabolic, urinalysis to check kidney function and make sure everything is normal there too. I think theres another test or two, but I can’t remember. On my end it was all but two of the tests that were ordered when i was at my rheumatologist’s office the last time (9/29), the remaining blood tests need to be drawn at the hospital, as they aren’t in the tests that the lab our clinic sends it’s tests to covers. And that sentence will probably need to be fixed later when I’m more awake. Basically the clinic that provides our primary care has a draw station attached, and can run certain tests as well. The rest get sent up to a lab in the state’s capitol city, as the clinic is a state run clinic, and that is where the state’s lab is. They do not provide all testing, and do not have the ability to do all testing, I’m not sure if the reason is financial or something else. So the tests that aren’t able to be done by that lab are tests that have to go on another lab order for me to take to either the hospital we live by or the hospital my rheumatologist ie abouts connected with (her office is in the hospital complex in the city she works out of). After I get these last two tests run I will call and set up my next rheumatology appt and will likely get the results of everything in three to four weeks, as she only works two days a week at that office, so she is usually pretty booked up, and that also gives the hospital time to get all the results to her. The clinic, which ships all of my labs to the opposite end of the state, gets my labs back faster than the hospital, and is more reliable about actually getting them to my rheumatologist. So a few days before I go see her again I will have to call and make sure they have received all of the results. If not I’ll have to call and bother the hospital until they send the results to the proper place.
While we were getting the other labs done they ran the pregnancy test that my PCP wanted done before I started the bcp. It was negative… no surprise there. So I started on my birth control, and back on my blood pressure medication (for my Raynaud’s) after we got home. And I’m warning everyone now, it will likely turn me into either a ball of tears or a raging bitch, and probably I’ll go between the two until I get through the adjustment period. If I can get my body to cooperate I will be using the pills continuously, so hopefully that means that I will settle into whatever normal will be for me on this pill rather quickly and stay there until I go back off of it! We’ll see… I’d like to skip periods as much as possible during that time, and it has the added affect of no changing hormone levels since I’m on a monophaisic… so unless I’m having periods every month my hormones will be staying the same (or close to it) constantly until my body decides it’s time to bleed or I go back off of the pill. And if that works, it’s good news my friends. In fact it’s excellent news!
Oh, and a report on the amount of pokes for my labwork… two! And not only that, my blood flowed well enough for them to get the full amount that is liked for the tests, rather than just the bare minimum, which is what usually is drawn if they can get my veins to give up any blood. So I’m keeping myself overhydrated again tonight, then going to the hospital tomorrow as long as I continue to feel alright, at which point those other two tests should be easy to draw for!
The trick seems to be drinking a lot more than necessary for staying hydrated, so my veins stay plump, followed by them applying heat to the area of my arm they want to draw from immediately before they insert the needle. Between those two things and the tourniquet my veins end up showing themselves!

I will do a full update later…
My appt led to an ER visit so I could get an u/s done. Took 3 pokes to start an iv (one right elbow, one left elbow, finally got it in left hand) … did some basic labs, had an ultrasound – boy did that suck.
Results: Pregnancy and miscarriage neither confirmed or denied. I’m sure it was a miscarriage for many reasons including a friend who looked at the photos saying it looked like a smaller version of her 8 week abortion. Uterus was empty. Had a cyst that is resolving, probably corpus luteum, maybe some other type, couldn’t tell from u/s.
Have follow up with women’s health care provider 11/13/09.

More details later, but I’m alive and ok.

Tomorrow morning I have an appt with my PCP for a blood work up and a check up to make sure that everything is okay inside me post miscarriage. I’m starting the water chug now so hopefully I’m hydrated enough for them to get into my veins! I will also be taking my orders for the workup we were supposed to do last week with me so I can get it all done at once and not have a huge amount of stuff to do at the hospital where I’m charged full price out of pocket for each test.
Yaya did a post about testing for recurrent miscarriages… so what’s listed there is probably what I get to have done tomorrow. I’m glad that I will be up there to get checked out and make sure things are alright.

So I attempted to do my labs earlier, or at least the ones that can be done at the clinic that my primary care guy works out of. (I plan to do a better post about today at a later point… hopefully I’m not jinxing myself by saying that.)

The reason I say attempted shows in the pictures below. All of those pokes, and no luck getting any blood out of my veins, even though they got into the veins either 2 or 3 different times, they just couldn’t get blood out of them. 😦 (It probably doesn’t help that I was dehydrated!)

The bruising doesn’t show well in the pictures, between the fact I took them myself and the fact the lighting wasn’t so great when I took them.

The captions I put onto each picture with Paint aren’t showing up well and I don’t want to make the pictures huge, so I’m going to put them under each picture.

left elbow... there are 4 pokes in there from today, 1 from my ER visit Monday (they used that exact spot for one of the pokes)

left elbow... there are 4 pokes in there from today, 1 from my ER visit Monday (they used that exact spot for one of the pokes)


The left caption: Three different poke sites, so close together that they aren’t very distinguishable in the photo.
The right caption: One poke site, right side of my left elbow.

Right elbow... 2 or 3 pokes

Right elbow... 2 or 3 pokes


Caption: I have two or three different pokes in this elbow too!

The back/outside of my right arm... one poke.

The back/outside of my right arm... one poke.


Caption: That red dot is a poke site on the back of my arm! Everything else is freckles!!

So Friday our internet was cut off until Monday, which made it really rough for all the people who keep an eye on me online and were very worried that I wasn’t replying to them on any sites or answering any messages from them.

On top of that I was in ER early Monday morning. I had to call E home from work before his lunch to take me because I went from tingly lips to a numb tongue, which was quickly followed by numbness in my left hand and foot. We wanted to make sure it wasn’t a stroke or TIA. It wasn’t, and all the blood work she could get done quickly was fine, so we aren’t sure what happened. My rheumatologist isn’t worried about doing more testing at this point, though that may come up at my next appt … We’re probably going to have a big set of testing coming up for me.

The rest of Monday was spent with phone calls followed by sleep.

Tuesday was spent with more phone calls, as well as an appt to hopefully get some rent assistance and our electric bill paid, because otherwise who knows how we’re paying out bills. I’ve had more doctors appts and visits this month than I have since last year, and I have a bunch of testing to do again. We also dropped off the application for food stamps and state aid while waiting for disability, as there is some sort of program for the needy disabled in our state to help with financial things while waiting to get on disability (which reminds me, we are looking at moving to a state closer to the kids and my family next spring, I need to check into what is transferrable and what is also available in that state that we need to apply for when we are moving). The appt for that is next Wednesday.

Today (Wednesday) is being spent driving to and from our primary doctors’ office and E has an appt with his PCP. I will be getting my lab tests done while we are up there. I also have been having to fast for these tests…. so I’m hungry and tired and just not feeling well due to all of that. 😦 I need to get a shower sometime in the next hour or so because I’m feeling really gross and don’t want to go to the doc’s office, but I’m not sure how I’m getting the energy to do that and the stuff that needs to be done today, plus I’m likely to be the one driving (I generally drive to these appts) and I’m going to have to take care of the prescriptions afterwards.

So I had my rheumatology appt today. E wasn’t feeling up to driving so I did the driving today…. and we had beautiful fall colors once we got out of our county and into the one that my doctor is in. E dozed on the way there, I had him take lots of pictures for me on the way home!
We got there and sat in the waiting room for a couple minutes, then my doctor’s assistant came and got me so we could do all my vitals and all of that. I was at 95 or so on their scale, but none of us believe that I’ve gained 5lbs in the last three weeks, and the type of scale at our PCP’s office is much more accurate than the bathroom scale (that’s what it made me think of, I’m not sure exactly what kind of scale it was, but it looked like a big version of what you’d get for a bathroom) they have at the rheumatologist’s office, so we’re going with my weight still being just over 90 lbs. I’ll be weighed again next week when we have an appt at the PCP’s for E, I’ll also be getting labs done at that point. From how it looks I’ve not gained weight, but I also haven’t lost more weight, which is good.
I didn’t think to check what my blood pressure was, so I don’t know if it’s still stabilized at 120/80 or if it’s gone down to what used to be my normal… or if (please not this) it’s gone up again. I’m assuming it was fine since the doctor didn’t comment on it, but I don’t know for sure. I was running a slight fever also, and would guess I have been for about the last week, which is also about the time I started feeling worse than normal… not sure how to describe how I’ve felt, just that it’s been worse than the norm. I’ve been sleeping a lot the past week or week and a half too. My normal temp seems to be around 97 or so… today’s temp was 99.8. The assistant also got all the basic info from me about meds and so on, as far as asking how I’ve been feeling lately, so I read off what’s been going on… I have a notebook that I jot info into for the doctors so I don’t forget any of it. After this was all finished she went and got my doctor, and mentioned that we may have to get digestive health involved due to my weight (more on this in a bit, but so far only the assistant is concerned about that, my doctor is doing a lot of testing first) and wanting to help with whatever is going on in my digestive system.
My doctor came in very quickly after the assistant left, and we started talking about how I’ve been feeling. I filled her in and she asked some questions. After that she had me get onto the table/bed so she could do an exam. The last time she did a full exam was nearly a year ago, when I first went to see her last December. Today she listened to my heart and lungs, and commented on how my heart rate is still fast (there is no medical explanation for this at this point, we’ve done a bunch of different tests and can’t find a reason), but beyond that she didn’t comment on it. She also checked my eyes, throat, and under my tongue to see how they were looking, and checked my lymph nodes in my neck to see if they were swollen. She asked if they’d been swollen recently, and my response was that between a couple of them (behind my ears, in my throat and in my groin) the question is when don’t I have swollen glands somewhere? She checked my joints next, seeing how they felt to her, and asked me which ones were tender and which weren’t. After that she had me lay back and started checking my abdomen for painful spots and just doing an exam, she also listened to my stomach with her stethoscope. Once that was done with that she had me curl my legs up to my stomach one at a time and asked how it made my abdomen feel. Not surprisingly, it felt fine on the right, and hurt on the left (which is where my pain has all been anyway) but all of my joints behaved (shockingly) as she did that, so the only pain was abdominal. Once that was all done she helped me sit back up and we talked about meds and whether I needed refills on prescriptions or not. We also discussed disability as a possibility for me, especially with all the weight issues I’ve been having. She didn’t comment on anything else when I brought it up, but said “with your weight…. Yes, I think it’s a good idea.” so that’s that, I need to go print up the paperwork and get it all started… hopefully by this time next year I’ll be on it, though sooner would be preferable to later lol.
After all of that I went and spoke with her assistant, who scheduled my next appointment and gave me my lab forms. I was surprised, she said the doctor wanted to see me in a month, it’s usually been 3 or 4 months between appts, but obviously she’s concerned about getting these lab results back and making sure my organs are functioning, so we can figure out what’s happening and figure out how to deal with it. I go back in early November to see her.
Hopefully since I’m getting my labs run through my PCPs office rather than the hospital they’ll all be back to her in time… we had a rough time getting my labs from the hospital, some of them had to actually be called for two months after the tests were run, because they never sent them to my doctors.
Here’s what my latest labs are for: (Note: Most of these have been run throughout the last year, mainly last November, so now she’s going to be checking my levels and comparing to last year, with me having been on medication for 10 months now.) Depending on how the levels come out I may have to have a CT scan run for my abdomen so they can see how the organs appear.
Comp C3 (Complement C3): Complement is a group of blood proteins that cause immune responses and inflammation. The complement cascade is a series of reactions that take place in the blood. There are 9 major complement components, labeled C1 through C9. This test measures C3. Complement activity is also measured to monitor how severe a disease is or to determine if treatment is working. For example, patients with active lupus erythematosus may have low levels of C3 and C4, and these component levels may be watched as an indicator of disease activity.
CRP, Quantitive (C-Reactive Protein): This test is used when your doctor suspects that you might be suffering from an inflammatory disorder (as with certain types of arthritis and autoimmune disorders or inflammatory bowel disease) or to check for the presence of infection (especially after surgery). Another site says: Quantitative-CRP is an acute phase reactant, which can be used as a test for inflammatory diseases, infections, & neoplastic diseases. Progressive increases correlate with increases of inflammation/injury. CRP may be used to detect early postoperative wound infection & to follow therapeutic response to anti-inflammatory agents. Recent reports have indicated that a highly sensitive version of the CRP assay may be used as an additional indicator for susceptibility to cardiac disease.
DS DNA (Anti-ds DNA): Anti-dsDNA – the most characteristic autoantibodies of Lupus present in about 60% of patients at some stage during the course of their condition.
Levels of anti-dsDNA rise and fall with changes in disease activity (particularly kidney disease). (Note: basically this is more likely to have changed or be positive if I’m having kidney involvement.)
CPK Total (Creatine phosphokinase Test): When the total CPK level is very high, it usually means there has been injury or stress to the heart, the brain, or muscle tissue. For example, when a muscle is damaged, CPK leaks into the bloodstream. Determining which specific form of CPK is high helps doctor’s determine which tissue has been damaged.
This test may be used to:
* Diagnose heart attack
* Evaluate cause of chest pain
* Determine if or how badly a muscle is damaged
* Detect early dermatomyositis and polymyositis
* Tell the difference between malignant hyperthermia and postoperative infection
* Reveal who carries muscular dystrophy (Duchenne)
The pattern and timing of a rise or fall in CPK levels can be diagnostically significant, particularly if a heart attack is suspected.
I assume this is being run to check the heart things… especially since (if I’m remembering correctly) polymyositis is one of the four common ways lupus can affect the heart. This was last run in either late Oct or early Nov by the ER.
Amylase: An amylase test measures the amount of this enzyme in a sample of blood taken from a vein or in a sample of urine. Normally, only low levels of amylase are found in the blood or urine. But if the pancreas or salivary glands become damaged or blocked, more amylase is usually released into the blood and urine. In the blood, amylase levels rise for only a short time. In the urine, amylase may remain high for several days.
Lipase: A lipase test measures the amount of this enzyme in a blood sample. High amounts of lipase may be found in the blood when the pancreas is damaged or when the tube leading from the pancreas (pancreatic duct) to the beginning of the small intestine is blocked.
The blood test for lipase is ordered, often along with an amylase test, to help diagnose and monitor acute pancreatitis (inflammation of the pancreas), chronic pancreatitis, and other disorders that involve the pancreas. Lipase testing is also occasionally used in the diagnosis and follow-up of cystic fibrosis, celiac disease, and Crohn’s disease.
Comp.Met.Panel(Comprehensive Metabolic Panel): A comprehensive metabolic panel is a blood test that measures your sugar (glucose) level, electrolyte and fluid balance, kidney function, and liver function.
CBC W/PLT & DIFF (Complete Blood Count, with differential):
The CBC is used as a broad screening test to check for such disorders as anemia, infection, and many other diseases. It is actually a panel of tests that examines different parts of the blood and includes the following:
* White blood cell (WBC) count is a count of the actual number of white blood cells per volume of blood. Both increases and decreases can be significant.
* White blood cell differential looks at the types of white blood cells present. There are five different types of white blood cells, each with its own function in protecting us from infection. The differential classifies a person’s white blood cells into each type: neutrophils (also known as segs, PMNs, granulocytes, grans), lymphocytes, monocytes, eosinophils, and basophils.
* Red blood cell (RBC) count is a count of the actual number of red blood cells per volume of blood. Both increases and decreases can point to abnormal conditions.
* Hemoglobin measures the amount of oxygen-carrying protein in the blood.
* Hematocrit measures the percentage of red blood cells in a given volume of whole blood.
* The platelet count is the number of platelets in a given volume of blood. Both increases and decreases can point to abnormal conditions of excess bleeding or clotting. Mean platelet volume (MPV) is a machine-calculated measurement of the average size of your 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.
* Mean corpuscular volume (MCV) is a measurement of the average size of your RBCs. The MCV is elevated when your RBCs are larger than normal (macrocytic), for example in anemia caused by vitamin B12 deficiency. When the MCV is decreased, your RBCs are smaller than normal (microcytic) as is seen in iron deficiency anemia or thalassemias.
* Mean corpuscular hemoglobin (MCH) is a calculation of the average amount of oxygen-carrying hemoglobin inside a red blood cell. Macrocytic RBCs are large so tend to have a higher MCH, while microcytic red cells would have a lower value.
* Mean corpuscular hemoglobin concentration (MCHC) is a calculation of the average concentration of hemoglobin inside a red cell. 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. 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.
* Red cell distribution width (RDW) is a calculation of the variation in the size of your RBCs. In some anemias, such as pernicious anemia, the amount of variation (anisocytosis) in RBC size (along with variation in shape – poikilocytosis) causes an increase in the RDW.
Urinalysis Screen: I’m sure this doesn’t need an explantion as to what is involved… basically it’s checking my urine for proteins and other things that shouldn’t be there, and will help check kidney function.
(It’s a good thing I looked all of these up since some of them require fasting and I wasn’t told, though I planned to anyway…)