September 2009


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…)

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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…)

I do not enjoy the drive to and from my rheumatologist’s office… it’s long, pretty, but very long and expensive, plus hard on our car. However, tomorrow is an appointment that due to lots of things has been put off a couple of times, I was supposed to see her in early July and that never happened, then in late July, which never happened, and finally tomorrow!
I need to see her about several things, including these headaches and my digestive issues. Also to see if we need to adjust meds, and what we are going to do about my weight. I’d rather not end up dropping more weight and ending up hospitalized… I’d like to stop all of this before it gets even worse. So hopefully she’ll have some ideas, or tell me it’s not lupus related and send me to my PCP… though I know the headaches are lupus related, I’m not sure that anything else is. Also she’ll get to see me either on my period (if it starts soon… day 24 right now… and although I’m in the middle of where it could start, I’m shocked it hasn’t started… my emotions took a definite turn today though, maybe we’ll actually see it soon) or right before it… which are two really bad times for me on so many levels. 😦
So wish me luck for tomorrow, hopefully I get some answers or get pointed in the direction of answers. I’m also hoping to get the disability paperwork printed up so we can get that ball rolling, but at the very least I want to talk to her about it, and I can send it up to her later… though I’d really rather have it in hand when we see her tomorrow.

  • 03:00 @HeadacheSlayer all hail Buffy indeed!! πŸ™‚ (And yes, I guessed when I saw the names lol!) #
  • 03:01 @HeadacheSlayer also, phenagran doesn’t work as well for me… if I’m naueaseated and going to vomit I still vomit, but lose pill also. #
  • 03:01 @HeadacheSlayer If I’m just nauseated, but not likely to throw up it actually works #
  • 03:06 @jeanneendo It has not been fun 😦 #
  • 03:08 RT @coffeesister: Disconnecting from change doesn’t recapture the past. It loses the future.-KathleenNorris #quote #hcr #
  • 03:09 @HeadacheSlayer Thanks for the FF πŸ™‚ #
  • 03:09 RT @WackyLisa: "We’re all victims of our own gene pool. Someone must’ve peed in yours." – Walter Bishop, "Fringe" #
  • 03:18 @sonjathegreat new blog posts are good πŸ™‚ #
  • 10:36 Glad E is around to help supervise showers….. it means I actually get clean without hurting myself! (I’d rather not fall!) #
  • 10:37 @JeannetteNL Wow! I’m so happy you have your pain down so far!! #
  • 10:37 @HeadacheSlayer I really hope you start feeling better soon!!! #
  • 10:41 RT @JeannetteNL: I think it is high time that Jon & Kate plus 8 go off the air AND they focus on their children’s well-being! Period. #
  • 10:44 @JeannetteNL I’m glad!! πŸ™‚ πŸ™‚ #
  • 10:45 RT @jeanneendo: 14th Amendment guarantees every person receive equal protection of the law; If any have #healthcare by law, all should. #hcr #
  • 10:46 @JeannetteNL That’s how E is too…. he gets the right pain meds and he does more cleaning in an hour than I do in a month…. #
  • 10:46 @JeannetteNL and he cooks enough food to last us in meals for awhile πŸ™‚ #
  • 10:56 @JeannetteNL I completely understand that…. at least on days where he’s not hurting too much. Rice pudding this morning LOL! #
  • 11:00 Off I go again… bye Twitter #
  • 18:53 @JeannetteNL LOL Yes, I do need to inform E’s doctor of that LOL! #
  • 18:53 @yorkg Sounds very likely 😦 I know someone who has fibro due to a car accident… 😦 #
  • 18:53 @jeanneendo My hip seems a bit better today… leg weakness, weakness all around, and headaches are continuing 😦 #
  • 18:57 @Endometriosis1 I’m sorry you are having so many issues with friends!!! Yes, I have had it happen 😦 ((hugs)) #
  • 18:59 @JeannetteNL LOL I"m serious… should tell his doc that LOL!! Though I know doc is doing as much as he can, trying to find right med/dose! #
  • 19:01 RT @NovelPatient: End of the Road? What 2 do when u r out of treatment options 4 ur debilitating chronic illness? tinyurl.com/ydf9tn6 #
  • 19:01 Ugh… I hate shortening things to numbers and letters when a tweet is too long 😦 #
  • 19:04 @JeannetteNL Sounds good! Sleep well!! πŸ™‚ #
  • 19:04 @hyperchondria I really hope you are on your way to a diagnosis!!!! Good luck!! #chronicillness #autoimmune #
  • 19:05 RT @literaryhall: A successful marriage needs u 2 fall in love many times, ALWAYS with the same person.. #
  • 19:06 RT @eyzrbrn: RT @lupus_news: Woman’s death epitome of health system’s failure: bit.ly/s9nIF #
  • 19:07 RT @eyzrbrn: 40% of Lupus patients have APS. Why #Lupus patients should be tested for #APS? See this article & see why: is.gd/Mys0 #
  • 19:08 @JeannetteNL I’m glad he got everything under control, but so sorry to hear about the situation for your husband! 😦 #
  • 19:30 @NovelPatient I’m not being allowed to comment on your latest blog post 😦 I tried a few times… 😦 ((hugs)) hope new doc has ideas! #
  • 19:53 @eyzrbrn You’re welcome… I don’t have aps, but my mom has a likely diagnosis… she has sjogren’s also… i have lupus… #
  • 19:53 RT @literaryhall: Agreed! RT @SusanPowers If you are not wearing clothes in your avatar, I must unfollow. #justsaying #
  • 20:05 I’m going to go try to get a bit more rest… later all #

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  • 01:35 RT @jeanneendo: Thinking of @momtojake. #endo #
  • 01:37 @yorkg I slept a lot! Taking pain pills and heading towards the fun of an #endo period means I have lots of "fatigue" … #
  • 01:37 @r0x Oh no!! I hope things pick up for you soon!! And good luck with the new job!! πŸ™‚ πŸ™‚ πŸ™‚ #
  • 01:38 RT @APSFA: RT @eyzrbrn: Many #Lupus patients also have #APS Let’s work together to bring awareness to both diseases! bit.ly/mVSVL #
  • 01:40 RT @APSFA: RT @msnbc_health: FDA: New OxyContin would be harder to abuse bit.ly/dqCRH #
  • 01:44 RT @eyzrbrn: RT @CNN: CNNMoney: 21 Tylenol children’s meds recalled. bit.ly/hCR9k #
  • 01:51 RT @RA_Guy: Arthritis Relief Comes At High Price bit.ly/SZzO6 #
  • 03:31 RT @jeanneendo: PBS Special Report on #healthcare is very interesting. #hcr bit.ly/6cylo #
  • 03:34 #phrasesihate "you’re too young to be sick" (because my health issues care about age? and actually they generally strike young women) #
  • 03:43 Thanks @Shennee_Rutt and @lupuschick πŸ™‚ #
  • 03:44 @HeadacheSlayer I love the haiku!! #
  • 03:45 RT @HeadacheSlayer: You big bad germies~playing games with my body~I wish you’d quit it. #germhaiku #icecreamisthecure #
  • 03:46 @Endochick ((hugs)) I’m so sorry about all of this… I am sending thoughts and energy for you guys…. 😦 #
  • 03:54 @HeadacheSlayer I love it!! It’s awesome…. πŸ˜€ πŸ˜€ πŸ˜€ #
  • 04:11 Support #Lupus, add a #twibbon to your avatar now! – twibbon.com/join/Lupus-2 #
  • 04:12 RT @jeanneendo: via @RobinGrantham For those who missed: "How I lost my #healthcare insurance at the hairstylist’s" #hcr bit.ly/gM3lD #
  • 04:13 Support #Lupus, add a #twibbon to your avatar now! – twibbon.com/join/Lupus-2 #
  • 04:24 @HeadacheSlayer Seriously! I’m going to RT you again lol!!! (med/addiction) #
  • 04:24 RT @HeadacheSlayer: #phraseihate "oh i cant give u that med, you’ll get addicted 2 it. Now if u were 80 w terminal cancer" (qualityoflife?) #
  • 04:52 @HeadacheSlayer cool πŸ™‚ Thanks for letting me know!! πŸ™‚ (On a side note, I sent you some DMs… don’t know if you can check them via txt) #
  • 04:58 @HeadacheSlayer 😦 😦 😦 I have vit d defiency also.. and can’t do much about it since taking more than 2k iu makes me depressed/suicidal #
  • 04:59 @HeadacheSlayer and my mood has to be monitored when I even take that much because I end up depressed, though no suicidal stuff there. #
  • 05:05 @thehappy365 Thanks! #
  • 05:35 @Endochick You and your family are in my thoughts ((hugs)) #
  • 05:43 "Band Together for Lupus” until there is an FDA-approved medication specifically for lupus. Learn more www.lupus.org/bandtogether #
  • 06:42 @TakesCouRAge I’m sorry to hear your left wrist won, but I’m giggling at the prizes! #
  • 06:52 URGH!!! One of my favorite shows (Fringe) has misinformation about #lupus on the newest episode!!!! And I love that show! #
  • 06:53 URGH!!! One of my favorite shows (#Fringe) has misinformation about #lupus on the newest episode!!!! And I love that show! #
  • 07:03 @H2Ohexagon bit.ly/zKucF scroll down to Walter’s lab – Exhumation Autopsy that’s not how lupus prevents pregnancy or causes loss #
  • 07:03 @H2Ohexagon at least not that I’ve ever heard, and I’ve had discussions about it with LFA and my rheumatologist #
  • 07:41 @momtojake ((hugs))!!! #
  • 08:43 @MissKibbles my breath is held…. I’m turning blue πŸ˜› #
  • 08:44 OW! My hip just popped… audibly….. and my husband heard it a few yards away… #
  • 08:47 @MissKibbles I’m sorry 😦 #
  • 08:54 @MissKibbles I hope so!! #
  • 09:01 off to the pharmacy… wish I could get E to go… but he worked all night and his pain meds aren’t working for him 😦 #
  • 15:16 @jeanneendo Yah… I’m not having fun at all with this hip stuff 😦 #
  • 15:16 @coffeesister I know what you mean about following back being a slow process! #spoonies #spoonie #
  • 15:17 @yorkg Mostly the pain now that I’m on meds for the lupus, but it depends on what is going on in my life… #
  • 15:17 RT @ConnieFoggles: I don’t want to be part of your Mafia. I don’t want to find out what type of personality I have. This is Twitter not FB! #
  • 15:19 @ConnieFoggles I’m on the list twice… the 4th and 5th ones #
  • 15:21 @ConnieFoggles The only thing that I’m off with is not being 25 for #5 #
  • 15:27 @coffeesister I like what you had to say about fears and dreams, and evaporating in the light and his love πŸ™‚ #
  • 15:28 @yorkg I’m sorry to hear about the car accident and the meds 😦 #
  • 15:29 @perpetualspiral stirfry sounds wonderful! #
  • 15:29 @r0x I’m glad to hear you are enjoying it!! πŸ™‚ #
  • 15:33 "How I lost my #healthcare insurance at the hairstylist’s" @DailyKos bit.ly/gM3lD spot-on, telling & important; DO read & RT #HCR #p2 #
  • 15:36 I’m awake again, went to the store, was wiped out, came home, layed down and watched stuff on Netflix, went to sleep after taking meds. #
  • 15:37 could use more pain meds, but seriously naueseated and food sounds like a bad idea 😦 #
  • 15:43 @ConnieFoggles I wish I were too… for so many reasons… but so far only one pregnancy, which ended in miscarriage right away. 😦 #
  • 15:44 RT @coffeesister: 1 tweet for #MECFS could mean world to ME/CFS sufferers/patients ow.ly/qZit Please support us. #awareness is key #
  • 15:52 @ConnieFoggles I’m sorry to hear you went through them also… and me too! #
  • 15:52 @ConnieFoggles ((hugs)) #
  • 15:54 @ConnieFoggles yes 😦 I would have been about 4 months along now… mc happened in June, I had just passed implantation … saw tissue and.. #
  • 15:55 @ConnieFoggles just knew what it was, pee test confirmed (very lightly) #
  • 16:11 14th Amendment guarantees every person receive equal protection of the law; If any have #healthcare by law, all should. #HCR via @jeanneendo #
  • 16:22 @ConnieFoggles Some days I do better with it than others… #
  • 17:30 RT @lupuschick: b/c if we didn’t look at it and laugh, we’d cry, and then we’d loose our minds!..see, there’s a cycle… :o) #
  • 17:34 @MissKibbles Unfortunately that sounds about right (re: weather) #
  • 17:43 @Shennee_Rutt I hope so too!!! 😦 #
  • 17:43 @HeadacheSlayer Mmmmm… Buffy is awesome! #vampirediaries #
  • 17:54 @HeadacheSlayer No ins. for nausea meds… 😦 and zofran is expensive without it. 😦 thankfully I was able to get food and meds in me. #
  • 17:57 New post bit.ly/3Iphwa – about my latest adventures with showering and my legs and balance not working right… #
  • 18:12 I think I’m going to head back to bed… ttyl all! πŸ™‚ #

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Supervised showers. 😦

We no longer trust me showering alone. I should say we no longer trust my legs or balance. We are discussing getting a shower chair for me, as it’s now too late to get a plastic patio chair for this year…. and a shower chair would be more comfortable anyway.

E has the fun of either getting in the shower with me, or sitting on the toilet (only seat in the bathroom lol) and keeping an eye out for trouble so he can swing open the door and catch me.

What started this was an incident earlier this week… let me think… Monday? Sunday or Monday I believe. Monday (I just looked up my conversation archive with Sonja, because I mentioned the incident to her) I almost fell while showering, I slipped in the shower and lost my balance… thankfully we have showerbars in our shower since the owner of the house before our landlady bought it was elderly and had redone the bathroom (bigger shower, safety bars, better flooring) and the landlady left it like that! We also have a hand held shower head… which between the size of the shower and the shower head, it’s perfect for a shower chair (guessing that’s part of the reason for the remodel) so that should work out! Due to that incident E and I are uncomfortable with me showering without help. When I slipped, if I hadn’t caught myself I likely would have broken a leg due to the angle I fell at, and also have gone through the shower door… so I was picturing myself having to go to ER in E’s robe or a towel…. I hadn’t even realized the shower door part yet…. just the broken leg (femur) which was scary enough! And my legs are worse the last couple of days, since my good days ended, than they were before that happened. I’m also having some cognitive issues, balance issues, and headaches even with my meds. (The lupus like headaches!)

So that’s what’s new with me as far as excitement goes….. not so fun… but hey, if it helps I’ll take it.. the shower chair… not all the issues I’m having lol!

So… I seem to “nest” before my periods lol!
I’ve noticed this since going off of the birth control last October… the couple days before my period (or sometimes the day of) I get hit with this need to cook and clean.. no matter how much pain I’m in. I can be at an 8 on the pain scale and still be forcing myself to clean because I just can’t not do it. It’s frustrating and nice at the same time!
An example of this is today. I cooked mac and cheese for us this morning, and hotdogs for E. This evening when I was chased out of bed by pain and the wind making our house creak I cleaned for 45 minutes. Well… when I say I cleaned for 45 minutes I need to clarify. I did cleaning for most of that time, but I did take a break to try to call the kids, and I did sit every few minutes and chat… but in that 45 minutes I got a load of laundry in the washing machine, another one ready to go, trash picked up, our tables straightened up a bit, all the trash taken out to the dumpster, the front room cleaned up basically as much as possible right now (need to go through the pile of blankets and jackets on the couch still), the dishes done other than a few that I need to wash by hand, and the counters wiped down.
In the past I’ve been hit with the need to bake cakes or do other things like that lol.
Oh and also today I cleaned M’s box… like actually cleaned it. We use big garbage bags as liners, that way we don’t have to buy liners, we can just use our trash bags, and that way it’s safer and easier for me to clean it. I needed to clean it yesterday, but forgot once it was warm enough to take the litter out after emptying it. So M had the bag/liner all scrunched up on top of itself. At one point (after scrunching it) he apparently had to urinate, because as I went to pull it out of the litter box I noticed the box was wet. My first thought was the same as E’s when I asked him to come grab another bag for me to put the one that had been in the box into. We both thought he had ripped through the bag at some point… though why litter hadn’t come out was a question that hadn’t crossed my mind yet, and E hadn’t seen what was going on yet when he asked. So since there was urine in the bottom of it, and it had leaked elsewhere when I pulled out the bag I decided it was time to clean the box…. We keep it clean so it doesn’t stink as bad (which is part of the reason for the bag actually… nothing gets stuck to the bottom of the box now..) I took it to our shower, which has a handheld shower head, and sprayed it all down inside and out and let it sit in there for a couple hours to dry. Now M has a nice clean box, although he doesn’t realize the box itself is clean, just that there is a clean bag and clean litter LOL!
I can’t believe I do this kind of thing every month right before my period. Or I should say every cycle to be more accurate. And it is just so odd to me. But hey, I won’t complain about actually getting things done before I’m forced onto bedrest (or couch rest, or sitting at my computer trying to distract myself)… at least I’m getting things accomplished that won’t be done for at least a few days after that.

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