Do you have "leaky gut"?
Here someone was supposedly saved by a vegetarian diet. I don't know how you can cut out so many foods and survive. Seriously. I already can't have any gluten, which means no more bread, and not even my delicious beef-barley soup. If I cut out all meat, too, I am going to starve to death.
Here's more about the leaky gut theory.
And more.
And even more.
I think I am going to have to consider doing the GAPS diet.
This will be hard.
Augh.
Some people say drink tea, some say absolutely no caffeine, including tea. Some say bone broth is the answer, others say absolutely no meat products. Some say no dairy, others say lots of kefir.
I am so confused.
Pretty much all of them say to find organic, free-range, grass-fed products. Good grief. I live in Monsanto land. There are GMOs in my household dust. I don't even have access to organic air, so can I justify impoverishing myself on "organic" meats and vegetables?
Well, we're all going to die some day. It's okay. This world was not created for eternity, but God has placed eternity in our souls. We look forward to a better place, and when we get there, there will be no more lupus.
Friday, September 26, 2014
Thursday, September 25, 2014
Good lupus doctors are hard to find
These days, doctors specialize. Every doctor has a specialty, it seems. The ones without specialties (family practice, in particular) don't like to touch anything that would be construed as in the area of a specialist. They refer out. Liability, I guess.
The problem is when you don't fit neatly into any specialist's box.
I just went through the worst lupus flare of my life. I knew it was a lupus flare. Come on. This is my body. I know when I have a virus, and when I have lupus. So, to reiterate, I knew it was a lupus flare. The doctor at "convenient care" did not question whether it was lupus, and she treated me for lupus. And the treatment mitigated the problem. My lupus doctor (rheumatologist) was unreachable on the Monday after the weekend I went to "convenient care." In fact, she and her office were unreachable for the entire week after I'd gone to "convenient care." Fortunately, I somehow had the presence of mind to see my PCP (family practice), and she changed my prednisone from a burst to a taper. She looked me over quite closely, and showed me pictures on the internet that matched my rash, and was quite convinced that what I was experiencing was, indeed, a lupus flare.
When I finally saw my rheumatologist, 2.5 weeks after the fact, when all my symptoms had cleared up and gone away and she could finally fit me into her schedule, she said, and I quote, "I am not convinced that what you experienced was lupus."
I guess this is her attempt to pass the buck for not having been able to see me. I had diarrhea (along with everything else), ergo it was not lupus, as diarrhea is not a typical lupus symptom, never mind that it shows up on most lists of lupus symptoms that I've seen. Never mind that all my other symptoms were typical lupus symptoms, never mind that it started as a typical (for me) lupus flare and then progressed into something worse than I'd ever before experienced.
Never mind.
She also told me that she's moving to another state in a few months, to be closer to family.
She ordered another expensive round of lab work for me. We pay out of pocket for this. It generally ranges in cost from $1800-$2400. I just had it done in July. Labs are very important, she says. We need baselines. Now that I am "good," and off prednisone, we need another baseline in the system so we have something to compare against the next time I think I am flaring.
I came home without getting the labwork done. I think I will start looking for a different doctor before this one actually moves away.
Just because.
When you don't fit neatly into the box that they define as their specialty, they just pass the buck. You aren't suffering from what they treat; they are not responsible to treat you.
Specialists. Bah.
The problem is when you don't fit neatly into any specialist's box.
I just went through the worst lupus flare of my life. I knew it was a lupus flare. Come on. This is my body. I know when I have a virus, and when I have lupus. So, to reiterate, I knew it was a lupus flare. The doctor at "convenient care" did not question whether it was lupus, and she treated me for lupus. And the treatment mitigated the problem. My lupus doctor (rheumatologist) was unreachable on the Monday after the weekend I went to "convenient care." In fact, she and her office were unreachable for the entire week after I'd gone to "convenient care." Fortunately, I somehow had the presence of mind to see my PCP (family practice), and she changed my prednisone from a burst to a taper. She looked me over quite closely, and showed me pictures on the internet that matched my rash, and was quite convinced that what I was experiencing was, indeed, a lupus flare.
When I finally saw my rheumatologist, 2.5 weeks after the fact, when all my symptoms had cleared up and gone away and she could finally fit me into her schedule, she said, and I quote, "I am not convinced that what you experienced was lupus."
I guess this is her attempt to pass the buck for not having been able to see me. I had diarrhea (along with everything else), ergo it was not lupus, as diarrhea is not a typical lupus symptom, never mind that it shows up on most lists of lupus symptoms that I've seen. Never mind that all my other symptoms were typical lupus symptoms, never mind that it started as a typical (for me) lupus flare and then progressed into something worse than I'd ever before experienced.
Never mind.
She also told me that she's moving to another state in a few months, to be closer to family.
She ordered another expensive round of lab work for me. We pay out of pocket for this. It generally ranges in cost from $1800-$2400. I just had it done in July. Labs are very important, she says. We need baselines. Now that I am "good," and off prednisone, we need another baseline in the system so we have something to compare against the next time I think I am flaring.
I came home without getting the labwork done. I think I will start looking for a different doctor before this one actually moves away.
Just because.
When you don't fit neatly into the box that they define as their specialty, they just pass the buck. You aren't suffering from what they treat; they are not responsible to treat you.
Specialists. Bah.
Friday, September 12, 2014
What I understand about how lupus works
Lupus is an auto-immune disease.
It is a problem with your immune system.
Your immune system is there to help you fight off infection and disease. It is a good thing, your body's natural defense mechanism.
Not being a scientist or a medical professional, I do not understand the scientific mechanisms for how the immune system works, so this post will not be written in fact; it will be written in allegory. And I might be all wrong. But it might also help you (or someone else) understand a little bit more about lupus.
Here's a one-two-three look at ways the immune system can behave in your body:
(1) Infections and illnesses
The immune system can guard your body against germs (viruses and bacteria) that make you sick. For our purposes, we are going be unscientific and call these bad guys germs: they're the stuff you don't want in your body. We are discussing germs first, because germs are universally bad. Some people are more susceptible to them than others, but germs are bad for everybody.
When germs get in, your immune system kicks into action to throw them back out, or to kill them on the inside.
A fever is the immune system's reaction to try to "cook" germs out of our bodies, to raise the body's temperature to a point where it is hostile to the germs' survival, so they will die.
Coughs, sneezes, runny noses and the flowing of phlegm are another tactic the immune system uses to try to wash germs out of our membranes. Juicy secretions form to carry toxins out of the body.
Vomiting and diarrhea are, likewise, the body's attempt to rid itself of toxins.
These immune-system responses are often misunderstood, and people believe that they are the problem, the illness itself. Actually, they are signs that the body is trying to fight off the illness. People often strive to shut down immune-system responses because they can be uncomfortable. However, the art of medicine lies partly in knowing when to shut them down, and when to allow them to do their work. However, there can often come a point in an illness where the immune-system responses begin to do more harm than good, as when the phlegm of a cold sets into the lungs and becomes an infection: pneumonia.
It's all interconnected and very complicated. But at the end of the day, our immune systems are in place to help us fight off illnesses.
(2) Allergies
When people have allergies, their immune systems react against things called "allergens." Unlike the (~very scientific~) germs we discussed above, allergens are not necessarily bad for all people. They can be things like pet dander, plant pollen, dust or grass, or even things like milk, eggs, latex, seafood or certain types of medicine. What is an allergen for one person could pose no problem at all for another person, and might even be good for someone else.
However, when you have a reaction to an allergen, your immune system is identifying it as something bad (like a germ) and attacking it. Hence, you get symptoms. Ragweed pollen makes you sneeze. Latex makes you break out in a rash. Shrimp makes you vomit. In order to avoid the symptoms, you try to avoid the allergens.
Allergies are a misappropriation of the immune system. It attacks inappropriately against a substance that really ought not be a problem. Unfortunately, the immune-system response can be very acute and unpleasant, so the two ways to guard against allergy symptoms are to avoid the allergen, or to somehow shut down or slow down the immune-system response.
(3) Lupus
In lupus, the immune system is also acting up, similar to the way it does with an allergy. However, unlike with an allergy, there is no allergen. In lupus, the immune system has decided that the body (or one of the body's systems) is the enemy to obliterate. Yes, the immune system goes on attack against the very body that it is supposed to protect.
You know how you can avoid allergic reactions by avoiding allergens? You can't do that with lupus. You have only one line of defense once a flare begins: shut down the immune system. (Incidentally, people used to die rather quickly and regularly from lupus before it was understood how to disarm the body's immune system.)
This is why it is so very important, in lupus, to try to keep things from flaring. You don't want to attract the attention of that immune system. It's a rogue immune system. Imagine a well trained group of soldiers, and then imagine that they have been destroyed and replaced by a pack of wild wolves. That's sort of what has happened to the immune system of a person with lupus (maybe that's why they call it lupus). When something starts to go, those wolves are on it as though they are chasing down a wounded deer. As the immune system rages on, it produces symptoms like joint pain, fever, nausea, vomiting, diarrhea, tightness of the chest, difficulty breathing, swollen glands, sore throat, cough, rash, itching, hair loss, and much more. The best we can do at this point is try to shoot the immune system with a hypothetical stun-gun and put it to sleep for a few days, hoping that in the meantime the symptoms will abate (the proverbial wounded deer washes in the stream and finds a clean, safe bed to rest in), so that when the immune system wakes up again, it will be groggy, forget about its prey, and continue to cease and desist in its attack for awhile.
Obviously we can't live our lives with our immune systems shut off. Well, not for very long at any rate. Treatment for lupus involves low doses of medications that lightly suppress the immune system (like plaquenil), coupled with more complete immune-system blockers (like prednisone) for when things get really bad.
A cure for lupus would involve figuring our how to re-regulate the immune system so it would respond to appropriate stimuli and leave the poor body alone.
In the meantime, please be understanding of your friends with lupus if they do things that seem weird (to you) in order to avoid a flare. Believe me. They have been through some pain and discomfort. They aren't trying to be difficult. They'd like to eat the things you eat, go the places you go and do the things you do, more than anything.
Here are some things you should encourage (and never mock) in your lupus buddies:
Early bedtimes
Gluten free diets
Anti-inflammatory diets
Gentle exercise
Avoidance of extreme hot or extreme cold
Stress reduction
Gentle lighting
Gentle sound levels
Simple schedules
Limited outings
Avoiding contact with lots of people, especially if some may be ill
Hot tea
Lots of love and understanding
It is a problem with your immune system.
Your immune system is there to help you fight off infection and disease. It is a good thing, your body's natural defense mechanism.
Not being a scientist or a medical professional, I do not understand the scientific mechanisms for how the immune system works, so this post will not be written in fact; it will be written in allegory. And I might be all wrong. But it might also help you (or someone else) understand a little bit more about lupus.
Here's a one-two-three look at ways the immune system can behave in your body:
(1) Infections and illnesses
The immune system can guard your body against germs (viruses and bacteria) that make you sick. For our purposes, we are going be unscientific and call these bad guys germs: they're the stuff you don't want in your body. We are discussing germs first, because germs are universally bad. Some people are more susceptible to them than others, but germs are bad for everybody.
When germs get in, your immune system kicks into action to throw them back out, or to kill them on the inside.
A fever is the immune system's reaction to try to "cook" germs out of our bodies, to raise the body's temperature to a point where it is hostile to the germs' survival, so they will die.
Coughs, sneezes, runny noses and the flowing of phlegm are another tactic the immune system uses to try to wash germs out of our membranes. Juicy secretions form to carry toxins out of the body.
Vomiting and diarrhea are, likewise, the body's attempt to rid itself of toxins.
These immune-system responses are often misunderstood, and people believe that they are the problem, the illness itself. Actually, they are signs that the body is trying to fight off the illness. People often strive to shut down immune-system responses because they can be uncomfortable. However, the art of medicine lies partly in knowing when to shut them down, and when to allow them to do their work. However, there can often come a point in an illness where the immune-system responses begin to do more harm than good, as when the phlegm of a cold sets into the lungs and becomes an infection: pneumonia.
It's all interconnected and very complicated. But at the end of the day, our immune systems are in place to help us fight off illnesses.
(2) Allergies
When people have allergies, their immune systems react against things called "allergens." Unlike the (~very scientific~) germs we discussed above, allergens are not necessarily bad for all people. They can be things like pet dander, plant pollen, dust or grass, or even things like milk, eggs, latex, seafood or certain types of medicine. What is an allergen for one person could pose no problem at all for another person, and might even be good for someone else.
However, when you have a reaction to an allergen, your immune system is identifying it as something bad (like a germ) and attacking it. Hence, you get symptoms. Ragweed pollen makes you sneeze. Latex makes you break out in a rash. Shrimp makes you vomit. In order to avoid the symptoms, you try to avoid the allergens.
Allergies are a misappropriation of the immune system. It attacks inappropriately against a substance that really ought not be a problem. Unfortunately, the immune-system response can be very acute and unpleasant, so the two ways to guard against allergy symptoms are to avoid the allergen, or to somehow shut down or slow down the immune-system response.
(3) Lupus
In lupus, the immune system is also acting up, similar to the way it does with an allergy. However, unlike with an allergy, there is no allergen. In lupus, the immune system has decided that the body (or one of the body's systems) is the enemy to obliterate. Yes, the immune system goes on attack against the very body that it is supposed to protect.
You know how you can avoid allergic reactions by avoiding allergens? You can't do that with lupus. You have only one line of defense once a flare begins: shut down the immune system. (Incidentally, people used to die rather quickly and regularly from lupus before it was understood how to disarm the body's immune system.)
This is why it is so very important, in lupus, to try to keep things from flaring. You don't want to attract the attention of that immune system. It's a rogue immune system. Imagine a well trained group of soldiers, and then imagine that they have been destroyed and replaced by a pack of wild wolves. That's sort of what has happened to the immune system of a person with lupus (maybe that's why they call it lupus). When something starts to go, those wolves are on it as though they are chasing down a wounded deer. As the immune system rages on, it produces symptoms like joint pain, fever, nausea, vomiting, diarrhea, tightness of the chest, difficulty breathing, swollen glands, sore throat, cough, rash, itching, hair loss, and much more. The best we can do at this point is try to shoot the immune system with a hypothetical stun-gun and put it to sleep for a few days, hoping that in the meantime the symptoms will abate (the proverbial wounded deer washes in the stream and finds a clean, safe bed to rest in), so that when the immune system wakes up again, it will be groggy, forget about its prey, and continue to cease and desist in its attack for awhile.
Obviously we can't live our lives with our immune systems shut off. Well, not for very long at any rate. Treatment for lupus involves low doses of medications that lightly suppress the immune system (like plaquenil), coupled with more complete immune-system blockers (like prednisone) for when things get really bad.
A cure for lupus would involve figuring our how to re-regulate the immune system so it would respond to appropriate stimuli and leave the poor body alone.
In the meantime, please be understanding of your friends with lupus if they do things that seem weird (to you) in order to avoid a flare. Believe me. They have been through some pain and discomfort. They aren't trying to be difficult. They'd like to eat the things you eat, go the places you go and do the things you do, more than anything.
Here are some things you should encourage (and never mock) in your lupus buddies:
Early bedtimes
Gluten free diets
Anti-inflammatory diets
Gentle exercise
Avoidance of extreme hot or extreme cold
Stress reduction
Gentle lighting
Gentle sound levels
Simple schedules
Limited outings
Avoiding contact with lots of people, especially if some may be ill
Hot tea
Lots of love and understanding
Monday, September 8, 2014
My first major lupus flare... or is it measles?
If you read my last post (and I believe that stats showed that one person did, although I never know whether they are counting me by mistake)-- you already know that I was headed into something bad.
Yes. I thought it was bad on Tuesday. I'd gone to a Bible Study Fellowship meeting, followed by lunch with some of the women (I was very good and had a self-designed salad with safe ingredients). After lunch, I picked Jon up at school, and on our way home, I began a headache. Headaches are a pretty normal lupus symptom for me; I didn't think too much of it, just spent a lot of time down on the sofa, feeling guilty for not making dinner. Shawn came home and cooked up some GF spaghetti for us.
I kept telling Shawn, "My skin is all sore and tender. And I keep feeling chilled. I think I have a fever."
Finally he said to me, "Why don't you take your temperature?" I whimpered and whined and said I didn't even know where the thermometer was, and I didn't feel good enough to look for it. A few minutes later, Shawn appeared in the kitchen, thermometer in hand. We checked my temp and it was 99.6. Now, for me that is actually significant, because my normal, baseline temperature runs 97.5.
"No wonder you don't feel good," Shawn said. I went to bed and tried to sleep it off.
That was Tuesday.
On Wednesday I had to take Schubert to the vet at 9 a.m. for a follow up. It was hard to get going, and it was a 30 minute drive, but in the end we were only 5 minutes late. However, by the time we got home I was utterly wiped out. We were still low on food... I think we've been low on food since we got back from our trip to visit Shawn's parents. But I opted out of heading back out to do major shopping, and looked in the refrigerator to see what I could make with what we had. Using fresh tomatoes from our neighbor's garden and some frozen ground beef, I was able to put together a nice pot of chili. I also baked coconut flour cupcakes. Those were my three accomplishments on Wednesday: vet, chili, GF cupcakes. Then I was shot. And I still had a fever. I think it was 100.4. I was able to get down a partial bowl of the chili for dinner.
On Thursday, I decided that I seriously needed to lick this thing. By Thursday, food was looking bad to me. I was having trouble swallowing more than a couple of bites of anything. I drank tea and stayed in bed most of the day. I accomplished exactly nothing. My throat was starting to hurt a little bit; I thought perhaps this was because I'd been forgetting to take my Claritin since all this started. I tried taking a Claritin. My skin was still tender; my whole body was tender. The fever was rising slowly. At the end of the day, after intentionally resting all day, I didn't feel better. I felt worse.
Friday morning we had eye appointments, so I got up and got ready to go, still feverish. Upon returning home after the optometrist, I was bushed. I knew I should run Schubert over to the groomer for a medicated allergy bath, especially since I actually had the car, but I just lay on the futon on the sunporch, feeling guilty for not going.
The doorbell rang. What? It was the piano tuner. Somehow I had forgotten, but at least I felt better about not taking Schu to the groomer. The piano needs to be re-somethinged (realigned?). I was not surprised, and I was quite happy that it can be fixed; I'd thought we'd permanently damaged it in the move. In chatting with the piano tuner, I learned that his wife also has lupus, and that in the last few years, hers has advanced alarmingly to where her internal organs are all hardening and she has to make bi-weekly pilgrimages to Northwestern University for infusions. Maybe that wasn't exactly what I needed to hear as I wandered lethargically from sofa to futon to bed with my first serious lupus fever.
I don't remember the earlier NSAIDs (non steroidal anti inflammatory drugs) I'd taken for the fever on Friday, but I took two ibuprofen at 8 p.m., because I couldn't wait until bedtime, and I took two more at 10:30 p.m., and after I let my mouth rest from the cooling effect of the water I used to swallow the second dose, I took my temperature and it was 101.4. Now, that isn't what you would normally call an alarmingly high temperature, but when you consider that this was after 800 mg of ibuprofen (albeit staggered), after four days of rising fever, after a drink of water, it is higher than it sounds.
Sometime on Friday afternoon, I had called my rheumatologist, but she wasn't in. They told me to go to Convenient Care and get prednisone... as long as I didn't have an infection. I hate prednisone. I asked if I could try to ride out the weekend. They said sure.
Friday night was awful. At 2 a.m. I got up with diarrhea. At 3 a.m. I got up with diarrhea, vomited (almost nothing, as I was virtually empty after not being able to eat), and prayed for mercy from violent dry heaves. At 4 a.m. I had another bout of diarrhea, but no dry heaves.
Saturday is a blur. I spent the morning in bed. Shawn mowed. Jonathan cut up a juicy, ripe cantaloupe, and I was able to eat some of it. I willed myself to be better. Willed. We needed some food in the house. We were out of meat, eggs, bread (for the guys), everything. We needed juice, yogurt, applesauce, things I could stomach.
We decided to go to the southern suburban Walmart (as opposed to the northern urban Walmart). It's a longer drive for a cleaner, better stocked store, where we could get most all the things we needed at one place. Shawn also wanted to fill his new glasses prescription.
We forgot about the glasses until the end of the trip. Then, carts laden with bags of meat and dairy, we rolled up to "Vision" and he started to look. About halfway through, my body gave out. I sat down and laid my head on my arms on the optician's desk. I didn't care about anything. I told myself, "If you are sick, you can rest here while he gets this done just as well as you can rest anywhere." Which is not perhaps strictly true, especially in the middle of diarrhea cramps, but it is a good thought to have when you need it.
The rest of Saturday is a complete blur. On the way home from Walmart, I lay in the backseat of the car with my head on a somewhat suspect carblanket, sipping a sunwarmed bottle of water from a package that had lain on the car floor since our last trip. Later, Shawn gave me some of our new vanilla yogurt and applesauce in a square glass bowl for dinner. This is all I remember. I'd thought it would do me some good to get out. I'd thought wrong. My fever was 100-something. I think 100.8.
Sunday, I did not go to church. I woke up with chest pains and a sick stomach. Although the thought of swallowing anything was repugnant, I finally willed myself to take one aspirin. That did help the pain, and did not seem to worsen the nausea after the initial swallow. I tried to sip water and tea, and worked on getting ready to go to Convenient Care, like they'd told me to do in the first place. It took me hours. I got into the shower, and the water was too hot. I turned it back. It was still too hot. I turned it back again. I still didn't feel comfortable. I looked down and thought, "My goodness, this water is making my legs get mottled!" Then I realized that my legs were not just mottled, I had a ferocious rash all over my whole body. By this point, I was dizzy, nauseated, starving hungry and dehydrated. My fever was hovering at 100.4. I stumbled out of the shower and lay naked and rashy on a towel on my bed, trying to get dry. I can't remember whether I was hot or shivering, but I know I felt sticky. I thought that perhaps I might die. I hoped I would have time to write a letter to each of my children before the end.
I took a zippered, hooded sweatshirt and my favorite pillow to Convenient Care and stumbled towards the only spot in the waiting room that was a double rather than a single seat. Fortunately, the waiting room was mostly empty, so I didn't feel too greedy. Unfortunately, it was awkwardly close to another patron. Fortunately, I didn't care.
We got in to see the doctor ridiculously fast. Or maybe I was unconscious during the wait. The intake nurse weighed me (I'd lost a few pounds) and took my temperature which came out as, ironically, 96. That had to be a mistake. Even for me with a baseline 97.5, there's no way that was right. And with my recent history and the way I'd been feeling that day, there's no way that was right. Then she read off the form in front of her, "On a scale of 1 to 10, how would you rate your pain today?" I was not in good condition. I probably was not filled with the Holy Spirit. I stuttered and tripped and hemmed and hawed and finally said, "That's too hard of a question. I have no idea how to rate my pain. I'm nauseated. Nausea skews everything. I'm so miserably nauseated I couldn't possibly tell you what my pain scale is." I think she wrote down a 2 in the end. I'm not sure if you always get your top-of-the line medical practitioners on Sunday at 1:30 p.m. Well, she was probably trying to do her best.
The doctor asked me all the questions: Do you have chest pain? (yes) Well there probably isn't anything wrong with your heart. We can send you over for a chest x-ray if you want. (no) Do you have a sore throat? (yes) Any coughing (yes, just started) blah blah blah. It seemed to me that there were some reasons to think that I might have a flu bug, or even (based on the rash) the measles. The doctor gasped a little at the rash when she pushed up my shirt to listen to my heart. But in the end, this doctor, a small woman with distractingly white-rimmed glasses, seemed quite happy to call it lupus--not an infection or viral infection--and to put me on a "five day burst" of prednisone.
She also gave me Zofran for the nausea. She gave me one right there in the office, and they kept an eye on me for 20 minutes (a miserable, frigid 20 minutes, during which I wrapped my aching ankles and feet in a towel I audaciously pulled out of a drawer under the examining table). I asked the doctor whether Zofran has any side effects. I had a bad feeling about constipation. I felt too stupid to ask the question though, since we'd just been discussing my watery diarrhea. Sure enough, since that one Zofran in the doctor's office, I haven't had any more diarrhea, or anything else, for that matter. Shawn says not to worry since my digestive system is still very empty. I worry a little, since I'm not really at a point to be pushing leafy greens.
I am feeling better. Although, last night, my first night on prednisone, I woke up three times, soaked with sweat and had to change my pajamas each time. Drenched sleep shirts lined the edge of the garden tub in the morning. I should have changed the bed sheets when I changed my pajamas, but Shawn was in the bed. I laid out an absorbent towel over my damp sheets, and finished the night on that. This morning I had lots of laundry to do, which cheered me up after how unproductive I've been for days. It's good to feel better.
When David heard that they'd given me Zofran, he said, "Buy prune juice!" As a result. I have found that prune juice, over ice, diluted with some club soda, is actually quite a palatable drink.
Yes. I thought it was bad on Tuesday. I'd gone to a Bible Study Fellowship meeting, followed by lunch with some of the women (I was very good and had a self-designed salad with safe ingredients). After lunch, I picked Jon up at school, and on our way home, I began a headache. Headaches are a pretty normal lupus symptom for me; I didn't think too much of it, just spent a lot of time down on the sofa, feeling guilty for not making dinner. Shawn came home and cooked up some GF spaghetti for us.
I kept telling Shawn, "My skin is all sore and tender. And I keep feeling chilled. I think I have a fever."
Finally he said to me, "Why don't you take your temperature?" I whimpered and whined and said I didn't even know where the thermometer was, and I didn't feel good enough to look for it. A few minutes later, Shawn appeared in the kitchen, thermometer in hand. We checked my temp and it was 99.6. Now, for me that is actually significant, because my normal, baseline temperature runs 97.5.
"No wonder you don't feel good," Shawn said. I went to bed and tried to sleep it off.
That was Tuesday.
On Wednesday I had to take Schubert to the vet at 9 a.m. for a follow up. It was hard to get going, and it was a 30 minute drive, but in the end we were only 5 minutes late. However, by the time we got home I was utterly wiped out. We were still low on food... I think we've been low on food since we got back from our trip to visit Shawn's parents. But I opted out of heading back out to do major shopping, and looked in the refrigerator to see what I could make with what we had. Using fresh tomatoes from our neighbor's garden and some frozen ground beef, I was able to put together a nice pot of chili. I also baked coconut flour cupcakes. Those were my three accomplishments on Wednesday: vet, chili, GF cupcakes. Then I was shot. And I still had a fever. I think it was 100.4. I was able to get down a partial bowl of the chili for dinner.
On Thursday, I decided that I seriously needed to lick this thing. By Thursday, food was looking bad to me. I was having trouble swallowing more than a couple of bites of anything. I drank tea and stayed in bed most of the day. I accomplished exactly nothing. My throat was starting to hurt a little bit; I thought perhaps this was because I'd been forgetting to take my Claritin since all this started. I tried taking a Claritin. My skin was still tender; my whole body was tender. The fever was rising slowly. At the end of the day, after intentionally resting all day, I didn't feel better. I felt worse.
Friday morning we had eye appointments, so I got up and got ready to go, still feverish. Upon returning home after the optometrist, I was bushed. I knew I should run Schubert over to the groomer for a medicated allergy bath, especially since I actually had the car, but I just lay on the futon on the sunporch, feeling guilty for not going.
The doorbell rang. What? It was the piano tuner. Somehow I had forgotten, but at least I felt better about not taking Schu to the groomer. The piano needs to be re-somethinged (realigned?). I was not surprised, and I was quite happy that it can be fixed; I'd thought we'd permanently damaged it in the move. In chatting with the piano tuner, I learned that his wife also has lupus, and that in the last few years, hers has advanced alarmingly to where her internal organs are all hardening and she has to make bi-weekly pilgrimages to Northwestern University for infusions. Maybe that wasn't exactly what I needed to hear as I wandered lethargically from sofa to futon to bed with my first serious lupus fever.
I don't remember the earlier NSAIDs (non steroidal anti inflammatory drugs) I'd taken for the fever on Friday, but I took two ibuprofen at 8 p.m., because I couldn't wait until bedtime, and I took two more at 10:30 p.m., and after I let my mouth rest from the cooling effect of the water I used to swallow the second dose, I took my temperature and it was 101.4. Now, that isn't what you would normally call an alarmingly high temperature, but when you consider that this was after 800 mg of ibuprofen (albeit staggered), after four days of rising fever, after a drink of water, it is higher than it sounds.
Sometime on Friday afternoon, I had called my rheumatologist, but she wasn't in. They told me to go to Convenient Care and get prednisone... as long as I didn't have an infection. I hate prednisone. I asked if I could try to ride out the weekend. They said sure.
Friday night was awful. At 2 a.m. I got up with diarrhea. At 3 a.m. I got up with diarrhea, vomited (almost nothing, as I was virtually empty after not being able to eat), and prayed for mercy from violent dry heaves. At 4 a.m. I had another bout of diarrhea, but no dry heaves.
Saturday is a blur. I spent the morning in bed. Shawn mowed. Jonathan cut up a juicy, ripe cantaloupe, and I was able to eat some of it. I willed myself to be better. Willed. We needed some food in the house. We were out of meat, eggs, bread (for the guys), everything. We needed juice, yogurt, applesauce, things I could stomach.
We decided to go to the southern suburban Walmart (as opposed to the northern urban Walmart). It's a longer drive for a cleaner, better stocked store, where we could get most all the things we needed at one place. Shawn also wanted to fill his new glasses prescription.
We forgot about the glasses until the end of the trip. Then, carts laden with bags of meat and dairy, we rolled up to "Vision" and he started to look. About halfway through, my body gave out. I sat down and laid my head on my arms on the optician's desk. I didn't care about anything. I told myself, "If you are sick, you can rest here while he gets this done just as well as you can rest anywhere." Which is not perhaps strictly true, especially in the middle of diarrhea cramps, but it is a good thought to have when you need it.
The rest of Saturday is a complete blur. On the way home from Walmart, I lay in the backseat of the car with my head on a somewhat suspect carblanket, sipping a sunwarmed bottle of water from a package that had lain on the car floor since our last trip. Later, Shawn gave me some of our new vanilla yogurt and applesauce in a square glass bowl for dinner. This is all I remember. I'd thought it would do me some good to get out. I'd thought wrong. My fever was 100-something. I think 100.8.
Sunday, I did not go to church. I woke up with chest pains and a sick stomach. Although the thought of swallowing anything was repugnant, I finally willed myself to take one aspirin. That did help the pain, and did not seem to worsen the nausea after the initial swallow. I tried to sip water and tea, and worked on getting ready to go to Convenient Care, like they'd told me to do in the first place. It took me hours. I got into the shower, and the water was too hot. I turned it back. It was still too hot. I turned it back again. I still didn't feel comfortable. I looked down and thought, "My goodness, this water is making my legs get mottled!" Then I realized that my legs were not just mottled, I had a ferocious rash all over my whole body. By this point, I was dizzy, nauseated, starving hungry and dehydrated. My fever was hovering at 100.4. I stumbled out of the shower and lay naked and rashy on a towel on my bed, trying to get dry. I can't remember whether I was hot or shivering, but I know I felt sticky. I thought that perhaps I might die. I hoped I would have time to write a letter to each of my children before the end.
I took a zippered, hooded sweatshirt and my favorite pillow to Convenient Care and stumbled towards the only spot in the waiting room that was a double rather than a single seat. Fortunately, the waiting room was mostly empty, so I didn't feel too greedy. Unfortunately, it was awkwardly close to another patron. Fortunately, I didn't care.
We got in to see the doctor ridiculously fast. Or maybe I was unconscious during the wait. The intake nurse weighed me (I'd lost a few pounds) and took my temperature which came out as, ironically, 96. That had to be a mistake. Even for me with a baseline 97.5, there's no way that was right. And with my recent history and the way I'd been feeling that day, there's no way that was right. Then she read off the form in front of her, "On a scale of 1 to 10, how would you rate your pain today?" I was not in good condition. I probably was not filled with the Holy Spirit. I stuttered and tripped and hemmed and hawed and finally said, "That's too hard of a question. I have no idea how to rate my pain. I'm nauseated. Nausea skews everything. I'm so miserably nauseated I couldn't possibly tell you what my pain scale is." I think she wrote down a 2 in the end. I'm not sure if you always get your top-of-the line medical practitioners on Sunday at 1:30 p.m. Well, she was probably trying to do her best.
The doctor asked me all the questions: Do you have chest pain? (yes) Well there probably isn't anything wrong with your heart. We can send you over for a chest x-ray if you want. (no) Do you have a sore throat? (yes) Any coughing (yes, just started) blah blah blah. It seemed to me that there were some reasons to think that I might have a flu bug, or even (based on the rash) the measles. The doctor gasped a little at the rash when she pushed up my shirt to listen to my heart. But in the end, this doctor, a small woman with distractingly white-rimmed glasses, seemed quite happy to call it lupus--not an infection or viral infection--and to put me on a "five day burst" of prednisone.
She also gave me Zofran for the nausea. She gave me one right there in the office, and they kept an eye on me for 20 minutes (a miserable, frigid 20 minutes, during which I wrapped my aching ankles and feet in a towel I audaciously pulled out of a drawer under the examining table). I asked the doctor whether Zofran has any side effects. I had a bad feeling about constipation. I felt too stupid to ask the question though, since we'd just been discussing my watery diarrhea. Sure enough, since that one Zofran in the doctor's office, I haven't had any more diarrhea, or anything else, for that matter. Shawn says not to worry since my digestive system is still very empty. I worry a little, since I'm not really at a point to be pushing leafy greens.
I am feeling better. Although, last night, my first night on prednisone, I woke up three times, soaked with sweat and had to change my pajamas each time. Drenched sleep shirts lined the edge of the garden tub in the morning. I should have changed the bed sheets when I changed my pajamas, but Shawn was in the bed. I laid out an absorbent towel over my damp sheets, and finished the night on that. This morning I had lots of laundry to do, which cheered me up after how unproductive I've been for days. It's good to feel better.
When David heard that they'd given me Zofran, he said, "Buy prune juice!" As a result. I have found that prune juice, over ice, diluted with some club soda, is actually quite a palatable drink.
Tuesday, September 2, 2014
Lupus and gluten
Shortly after we moved to IL, someone told me that, having lupus, I ought never to let gluten pass my lips again. Gluten is inflammatory, and lupus pain comes from inflammation.
I figured that, in the scheme of things, going gluten-free was a relatively easy and inexpensive thing to try.
So.
I'm not sure the upshot of it all, but now I notice that I have far less pain when I stay off gluten, and loads of long-lasting, serious pain when I "cheat." For instance, I ate a piece of my son Jonathan's birthday cake 6 days ago. The day after, I was okay. I thought, "Hallelujah! Maybe I am okay now! Maybe I can go back to eating gluten!!" And then I was no longer okay. It began with a lot of aching and particularly a lot of pain in my lower back, pelvic area, hips and thighs. Today it has spread to my shoulders, neck and head; I have a bad headache.
I am sick of being gluten free. I hate rice flour products. I don't mind rice so much, plain rice or brown rice, but things made of rice flour are pretty nasty.
I told my husband the other day, "I just really miss nice, bland food that you can fill up on that isn't strong. Gentle food." Gentle food hurts me. Toast and egg noodles and crackers... they do me right in. So it is back to rolling my meat and cheese in romaine. Paleo wraps. Salad everything.
I eat potatoes. And rice. I have found that oatmeal doesn't hurt me. I make some nice things out of coconut flour. Quinoa pasta is a special treat. Bananas are a decent vehicle for nut butters.
Before I ate Jon's birthday cake, I'd been doing really, really well. I suppose that's why I took the risk. I remember telling Shawn before I ate it, "I haven't felt this good in ages!"
Next time I get tempted to cheat, I will tell myself, "Don't spoil a good thing." And then I will make coconut flour cupcakes.
Ach. I am sick of lettuce.
I am thankful for lettuce. I am thankful for lettuce. I am thankful for lettuce.
I am very thankful for coconut flour.
I figured that, in the scheme of things, going gluten-free was a relatively easy and inexpensive thing to try.
So.
I'm not sure the upshot of it all, but now I notice that I have far less pain when I stay off gluten, and loads of long-lasting, serious pain when I "cheat." For instance, I ate a piece of my son Jonathan's birthday cake 6 days ago. The day after, I was okay. I thought, "Hallelujah! Maybe I am okay now! Maybe I can go back to eating gluten!!" And then I was no longer okay. It began with a lot of aching and particularly a lot of pain in my lower back, pelvic area, hips and thighs. Today it has spread to my shoulders, neck and head; I have a bad headache.
I am sick of being gluten free. I hate rice flour products. I don't mind rice so much, plain rice or brown rice, but things made of rice flour are pretty nasty.
I told my husband the other day, "I just really miss nice, bland food that you can fill up on that isn't strong. Gentle food." Gentle food hurts me. Toast and egg noodles and crackers... they do me right in. So it is back to rolling my meat and cheese in romaine. Paleo wraps. Salad everything.
I eat potatoes. And rice. I have found that oatmeal doesn't hurt me. I make some nice things out of coconut flour. Quinoa pasta is a special treat. Bananas are a decent vehicle for nut butters.
Before I ate Jon's birthday cake, I'd been doing really, really well. I suppose that's why I took the risk. I remember telling Shawn before I ate it, "I haven't felt this good in ages!"
Next time I get tempted to cheat, I will tell myself, "Don't spoil a good thing." And then I will make coconut flour cupcakes.
Ach. I am sick of lettuce.
I am thankful for lettuce. I am thankful for lettuce. I am thankful for lettuce.
I am very thankful for coconut flour.
Saturday, July 26, 2014
Living with Lupus
Sometimes people ask me what it is like to have lupus.
There is this famous explanation: here.
I think a lot of the stuff I see about lupus on the internet is kind of whiny. I might take a lot of flack for saying that. I understand that many people with lupus are sicker than I am, in more pain than I have, and they have more difficult lives than I live. I don't mean to downplay that at all; I just wish there were a way to help healthy people understand our lives without expressing a lot of self-pity.
My lupus is not in remission. I need my hyroxychloroquine. However, with my hydroxychloroquine, my symptoms are quite well controlled. It is truly miraculous how so much of the pain that I was used to living with has gone away since I began this drug. I only take 200 mg per day, half what my NY doctor wanted me to take. My doctor here in IL is big on lower doses of medicine. I like that.
What I don't like about lupus is this: it's expensive and you never know what is going to happen next.
This is how I would describe lupus:
You go to the doctor four times a year. Before you go, you have to remember to go to the lab where they will run a myriad of tests on your blood and urine every three months. These tests track the damage that lupus is doing to your body. They want to track where it is attacking, catch it early, and then treat your symptoms before they progress too far. Particularly, they watch your kidneys and your heart. These tests are very expensive, $1000 to $2400 per time, which is rough when you have a high deductible insurance plan from the Obamacare marketplace and you pay out of pocket for your first $12,000 of medical expenses per year. Most of the time, the tests don't turn anything up, which is something to be thankful for, except that it is a very expensive way to achieve peace of mind.
While you are at the doctor, she asks you all about how you feel. You may be feeling pretty good, or you may have had some weird random symptoms. (Or you might be doing very poorly, but so far, in my case, this has not coincided with my doctor visits.) The last time I went, I'd been having weird, random pains in my big toes, shooting pains that woke me up in the night and kept me awake. My left thumb was also sore; it hurt badly when I would wash my hands and rub my fingers and thumbs together. I mentioned these symptoms to my doctor, wondering whether they meant anything or predicted anything or were related to anything. My doctor told me that I can take ibuprofen for the pain. Yes, I paid for a specialist doctor appointment to be told I could take ibuprofen for my pain. That's how it is with lupus.
With lupus, you never feel great, and you sort of get used to it, the constant lack of energy, thrumming in your head, tightness in your joints, low-level nausea, neck pain. It becomes your normal, your baseline. But then, when the symptoms ramp up, when the head and neck start to hurt badly and you really can't face your food at all, it sort of creeps up on you, without your noticing, until all of a sudden you just feel really, really, bad, your whole body aches, and you don't know what to do. I recently had a couple of days like that, where I just wanted to bury my head in my husband's chest and cry because I felt so bad, and I wanted him to make it go away, and I understood why sick babies fuss.
Lupus affects my eyes. I don't know whether it is the lupus itself attacking my eyes, or the hydroxychloroquine, which has a side effect of destroying vision. After over 40 years of having 20/20 vision, suddenly I can't see well at all anymore, and I have a terrible time keeping track of my glasses. I fear going blind. I try to look hard at things every day, my flowers, my dogs, the rooms in my house, the faces of the people I love. I want to get these things into my head and remember them. I worry about how I will find things I if I lose my sight. I have a lot of trouble reading. I still love to read, but I read much more slowly. It tires me out. And often my reading glasses make me sick to my stomach for some reason.
I try to forget that I have lupus for the better part of the day every day. I try to not think about the things I cannot do. I try to simplify my life and be thankful for what I have, what I can get done. If I can't paint my rooms and move furniture and hang pictures, I can be thankful that I have rooms, and that they have everything we need for eating and sleeping and keeping clean and dressed. If the walls are not colors I would have chosen, at least they are walls, in good repair.
I can walk my dogs, read my Bible, pray for my children, and usually I even have it in me to shop for groceries and make meals. I am so, so very thankful to my husband who works hard to provide for us and never complains about my lack of contribution (or my medical expenses!). I am thankful that this didn't develop until my kids were big and independent. I am thankful for essential oils and epsom salts and the soaking tub in my bathroom (that I never would have put in, but it came with the house).
Lupus will shorten my life, but it will not ruin my life. I have lots of good days, and the bad days help me to recognize and appreciate the good days all the more. Having lupus makes me conscious of the need to love people, every day, as much as I can while I can.
Lupus is not the worst. It will be okay. And heaven will be all the sweeter because of it.
There is this famous explanation: here.
I think a lot of the stuff I see about lupus on the internet is kind of whiny. I might take a lot of flack for saying that. I understand that many people with lupus are sicker than I am, in more pain than I have, and they have more difficult lives than I live. I don't mean to downplay that at all; I just wish there were a way to help healthy people understand our lives without expressing a lot of self-pity.
My lupus is not in remission. I need my hyroxychloroquine. However, with my hydroxychloroquine, my symptoms are quite well controlled. It is truly miraculous how so much of the pain that I was used to living with has gone away since I began this drug. I only take 200 mg per day, half what my NY doctor wanted me to take. My doctor here in IL is big on lower doses of medicine. I like that.
What I don't like about lupus is this: it's expensive and you never know what is going to happen next.
This is how I would describe lupus:
You go to the doctor four times a year. Before you go, you have to remember to go to the lab where they will run a myriad of tests on your blood and urine every three months. These tests track the damage that lupus is doing to your body. They want to track where it is attacking, catch it early, and then treat your symptoms before they progress too far. Particularly, they watch your kidneys and your heart. These tests are very expensive, $1000 to $2400 per time, which is rough when you have a high deductible insurance plan from the Obamacare marketplace and you pay out of pocket for your first $12,000 of medical expenses per year. Most of the time, the tests don't turn anything up, which is something to be thankful for, except that it is a very expensive way to achieve peace of mind.
While you are at the doctor, she asks you all about how you feel. You may be feeling pretty good, or you may have had some weird random symptoms. (Or you might be doing very poorly, but so far, in my case, this has not coincided with my doctor visits.) The last time I went, I'd been having weird, random pains in my big toes, shooting pains that woke me up in the night and kept me awake. My left thumb was also sore; it hurt badly when I would wash my hands and rub my fingers and thumbs together. I mentioned these symptoms to my doctor, wondering whether they meant anything or predicted anything or were related to anything. My doctor told me that I can take ibuprofen for the pain. Yes, I paid for a specialist doctor appointment to be told I could take ibuprofen for my pain. That's how it is with lupus.
With lupus, you never feel great, and you sort of get used to it, the constant lack of energy, thrumming in your head, tightness in your joints, low-level nausea, neck pain. It becomes your normal, your baseline. But then, when the symptoms ramp up, when the head and neck start to hurt badly and you really can't face your food at all, it sort of creeps up on you, without your noticing, until all of a sudden you just feel really, really, bad, your whole body aches, and you don't know what to do. I recently had a couple of days like that, where I just wanted to bury my head in my husband's chest and cry because I felt so bad, and I wanted him to make it go away, and I understood why sick babies fuss.
Lupus affects my eyes. I don't know whether it is the lupus itself attacking my eyes, or the hydroxychloroquine, which has a side effect of destroying vision. After over 40 years of having 20/20 vision, suddenly I can't see well at all anymore, and I have a terrible time keeping track of my glasses. I fear going blind. I try to look hard at things every day, my flowers, my dogs, the rooms in my house, the faces of the people I love. I want to get these things into my head and remember them. I worry about how I will find things I if I lose my sight. I have a lot of trouble reading. I still love to read, but I read much more slowly. It tires me out. And often my reading glasses make me sick to my stomach for some reason.
I try to forget that I have lupus for the better part of the day every day. I try to not think about the things I cannot do. I try to simplify my life and be thankful for what I have, what I can get done. If I can't paint my rooms and move furniture and hang pictures, I can be thankful that I have rooms, and that they have everything we need for eating and sleeping and keeping clean and dressed. If the walls are not colors I would have chosen, at least they are walls, in good repair.
I can walk my dogs, read my Bible, pray for my children, and usually I even have it in me to shop for groceries and make meals. I am so, so very thankful to my husband who works hard to provide for us and never complains about my lack of contribution (or my medical expenses!). I am thankful that this didn't develop until my kids were big and independent. I am thankful for essential oils and epsom salts and the soaking tub in my bathroom (that I never would have put in, but it came with the house).
Lupus will shorten my life, but it will not ruin my life. I have lots of good days, and the bad days help me to recognize and appreciate the good days all the more. Having lupus makes me conscious of the need to love people, every day, as much as I can while I can.
Lupus is not the worst. It will be okay. And heaven will be all the sweeter because of it.
Monday, March 24, 2014
Lupus
I've been totally neglecting this blog, but I think I'll use it sort of as a diary for lupus symptoms.
Boring. Yes. But it will be helpful to me over the long run, and I'll leave it public just in case it might turn out to be helpful to anybody else.
David doesn't think I have lupus. He just studied it, and he says it is not what I have. He also asked what I take, and when I told him hydroxychloroquine, he said, "That's not right. That's really bad for your kidneys. And lupus attacks your kidneys. They shouldn't give you that for lupus."
Nevertheless, it is what they give you for lupus.
For years I'd been tired and achy. I thought it was "just me." Honestly, I've never been a high energy person.
In elementary school when we had to run the 600 yard dash, I always finished last, in a straggling group of kids with profound special needs, limping along, clutching the stabbing stitch in my side, embarrassed and blinking back tears. The kids in the neighborhood called me "the strike-out queen," and made great fun of me when we played neighborhood baseball games in the Reifenbergers' back yard. I could not hit a badminton birdie to save my life. I could not do a cartwheel.
I figured out that eating a couple of jellybeans on a Sunday afternoon from the jar on the shelf at Grandma Rainbow's house would give me a wicked stomach ache during evening church.
In high school I learned that all-night events were not for me, and if I did attend one, I knew I needed to take my sleeping bag to the quietest corner I could find and bed myself down shortly after midnight, or I would be sick.
I never pulled an all-nighter in college. Not once.
I figured out that aspartame gives me wicked, metallic-tasting migraines.
When I worked, briefly, as a college graduate, I was sick literally every morning, fighting nausea on the commute in to work. Then I got pregnant and couldn't get out of bed for about two or three (or four?) months straight, due to the intense nausea and dizziness. How the Lord upheld me through four pregnancies, I will never understand, but I am so thankful for my children.
There were points of life when I could cope, and points when I was simply awash in overwhelmedness and despair. When the kids were little and I was up an average of 5-6 times per night with them, I crashed and burned. I was the Worst. Mother. In. The. World. Somehow, by the grace of God, I kept them fed, changed and bathed. I washed clothes and cut up fruit. We went to the grocery store and the library, and we read books. We survived. However, there were days when I wanted to just call someone, some social worker, and say, "I cannot do this. I am dying. I need help." But I was afraid that if I did, they would take my babies away and I would never get them back.
When they all got into school, I started trying to catch up on the sleep I'd lost over the previous years. When they were teenagers, we all slept until 10 or 11 on Saturday morning. I still felt as though I was in survival mode. There were all these things I wanted to do, and no energy to do them.
My initial symptoms were fatigue, dizziness (things like being unable to stand in a long line at a store to check out without getting very woozy), neck and back pain, aching knees, and dry eyes that would unexpectedly and unexplainably start to tear violently sometimes when I was driving for more than an hour. Also, extremely sensitive teeth.
When Jonathan was a senior in high school, I got a job teaching English and it almost killed me.
Leading up to the job, I'd started to have some trouble with diarrhea. Once I started the job, the diarrhea became severe. I couldn't keep anything in me. I ate just enough (tea and yogurt mostly) to get me through a day at school. I'd have to time my yogurt cups so that I could run out of my classroom during study halls and not during classes I needed to teach. I tried to eat as little as possible to enable myself to have as few runs to the restroom as possible, but I still ended up in the school bathroom at least 3 times a day. This was every day. Literally, every day. No hyperbole here.
I ate most of my food after I got home, because I was starving. The result: I was up multiple times every night with diarrhea. When I arose at 6:30 a.m. to head out for another day at school, I was never rested at all, especially since I was up past midnight most nights trying to grade and to get my lesson plans in line for four different classes (7th grade English, 8th grade Bible, 9th grade English and 10th grade English -- my first year ever teaching, no set curriculum to work from).
I had diarrhea from May 2012 through August 2013. It was worst while I was teaching, September 2012 through January 2013. I lost 11 pounds. When I quit teaching, the diarrhea continued, but I was just so happy to be at home with it rather than at school with it, I almost felt as though I was healed.
During that time, I also developed a pain in the fronts of my shoulders, in that indented area between your shoulders and your front ribs. it was intense. We wondered if it was rotator cuffs. It hurt right down into my arms, sometimes to my elbows, but was worst in the indented area. Things that hurt included: putting my arms into sleeves, trying to close the back of the van, and trying to find a comfortable position in which to sleep (there was none).
My wrists also became painful during that time, which I noticed most often when exiting school by pushing on the crash bar. However, this pain was what I would classify as "bearable," whereas the pain in my shoulders was nearly unbearable, so I didn't pay much attention to the pain in my wrists. Once I was at the doctor and the nurses were feeling my joints. They were squeezing and twisting, and working over my wrists. Finally one of them asked me, "Doesn't that hurt?" When she called my attention to it, I realized that it definitely was hurting, actually pretty sharply. But I was so used to ignoring it, it had not registered until she pointed it out. I said, "Yes! It does hurt!" She said, "I would think so. The joint is quite swollen."
A sad story: often at home with the kids, instead of recognizing that I was in pain, I would just get crabby. I'd lash out at them, and they'd flee the kitchen, leaving me to work alone (as I deserved). But strangely, often David would recognize that I was in pain when I did not realize it myself. He would come behind me and start rubbing my neck, and the relief that flowed through my body would just make me physically sort of deflate, although I was generally able to keep from crying. He was not afraid of me. He was sympathetic.
Anyhow, I didn't get to the doctor until after I quit teaching in January 2013. He started running every test known to mankind in connection with diarrhea, except he didn't order a colonoscopy, which I thought was weird (but I didn't complain).
In the meantime (I forgot to mention) I was getting extremely heavy menstrual periods for 7-9 days, every three weeks. Literally, more than 1/3 of my life was consumed with bleeding.
By the time I was diagnosed with lupus, I was quite anemic, on top of everything else.
The day the doctor called and told me I had lupus, I was actually relieved. It didn't feel like a sentence, it felt like an answer. It's lupus. There's a reason why I feel sick. There's a reason why I am always so tired. There is medicine. This was in March 2013. The doctor told me that I had lupus, that I'd need to take hydroxychloroquine for the rest of my life, and that it would take 2-3 months on the medicine before I noticed results. He said I should take 400 mg per day, but that it is upsetting to the stomach, so I might want to start out with 200 mg. and see how it went (I still had constant diarrhea). I never went up to 400 mg. but sometimes I take a pill in the morning if I suspect that I forgot my pill the night before, and I don't worry if I accidentally got a double dose. Double is better than missed.
I started on 200 mg. and within two weeks, the pain in the fronts of my shoulders had subsided. I could finally sleep! After a few months on hydroxychloroquine, I noticed that when we had a weekend trip (like to take kids to college), I was bouncing back much faster, feeling normal after a day at home, rather than being knocked back for a full week as I used to be.
We had to sell our house and move across the country between May 2013 and August 2013. It was a very stressful time, especially the last week of July 2013. However, I did survive. I made it. Very oddly, the day we arrived in our house here, my diarrhea shut off. Just like that. I have no idea what caused me to have diarrhea for 14 months, or what suddenly stopped it.
In October, on Halloween, I had a breast biopsy to check some suspicious lumps (they were benign!), and on December 5, 2013, I had a hysterectomy. I believe that the hysterectomy has helped with the anemia due to mitigated blood loss.
I had a severe stomach flu two weeks after the surgery and dropped back down to-- well, I'm not sure. I don't know where our scale is since we moved. But all my pants fall off me now, and even the tightest hole on my belt buckles is loose on me. Yesterday I wore yoga pants and reveled in the fact that they didn't fall down OR require a belt!
We aren't completely settled in our new house yet, and we've been going through a kitchen remodel, which has been quite a bit more stressful than we had anticipated. But that's pretty much my story up to this point.
The latest developments are probably fuzzy brain (I have trouble keeping track of my medical records because I can never remember the passwords to my accounts online), and increased stiffness after I spend time reading or studying or working on the computer. I also suffer quite a lot from being cold. I've been trying to avoid gluten, and I find that if I cheat on that now, I tend to get a migraine or have my lower back "go out" shortly after the cheat. Recently, my eyes and neck have been giving me less trouble.
Sometimes I feel very thankful that my lupus is as mild as it is. I am pretty used to the way I feel, and I don't expect to feel different. I don't expect to be able to do things that require great outpourings of energy and physical activity. I am grateful for the sun that shines and the air that I can breathe. I am grateful when I can go for a walk, or relax with a cup of creamy, hot tea. I am grateful for bananas and kefir and all of the things I can eat that fill my belly and make it feel nice. I am grateful for a warm house and a comfortable bed. I am thankful that I can look forward to eternity with a restored, healthy body. It's going to be okay.
Boring. Yes. But it will be helpful to me over the long run, and I'll leave it public just in case it might turn out to be helpful to anybody else.
David doesn't think I have lupus. He just studied it, and he says it is not what I have. He also asked what I take, and when I told him hydroxychloroquine, he said, "That's not right. That's really bad for your kidneys. And lupus attacks your kidneys. They shouldn't give you that for lupus."
Nevertheless, it is what they give you for lupus.
For years I'd been tired and achy. I thought it was "just me." Honestly, I've never been a high energy person.
In elementary school when we had to run the 600 yard dash, I always finished last, in a straggling group of kids with profound special needs, limping along, clutching the stabbing stitch in my side, embarrassed and blinking back tears. The kids in the neighborhood called me "the strike-out queen," and made great fun of me when we played neighborhood baseball games in the Reifenbergers' back yard. I could not hit a badminton birdie to save my life. I could not do a cartwheel.
I figured out that eating a couple of jellybeans on a Sunday afternoon from the jar on the shelf at Grandma Rainbow's house would give me a wicked stomach ache during evening church.
In high school I learned that all-night events were not for me, and if I did attend one, I knew I needed to take my sleeping bag to the quietest corner I could find and bed myself down shortly after midnight, or I would be sick.
I never pulled an all-nighter in college. Not once.
I figured out that aspartame gives me wicked, metallic-tasting migraines.
When I worked, briefly, as a college graduate, I was sick literally every morning, fighting nausea on the commute in to work. Then I got pregnant and couldn't get out of bed for about two or three (or four?) months straight, due to the intense nausea and dizziness. How the Lord upheld me through four pregnancies, I will never understand, but I am so thankful for my children.
There were points of life when I could cope, and points when I was simply awash in overwhelmedness and despair. When the kids were little and I was up an average of 5-6 times per night with them, I crashed and burned. I was the Worst. Mother. In. The. World. Somehow, by the grace of God, I kept them fed, changed and bathed. I washed clothes and cut up fruit. We went to the grocery store and the library, and we read books. We survived. However, there were days when I wanted to just call someone, some social worker, and say, "I cannot do this. I am dying. I need help." But I was afraid that if I did, they would take my babies away and I would never get them back.
When they all got into school, I started trying to catch up on the sleep I'd lost over the previous years. When they were teenagers, we all slept until 10 or 11 on Saturday morning. I still felt as though I was in survival mode. There were all these things I wanted to do, and no energy to do them.
My initial symptoms were fatigue, dizziness (things like being unable to stand in a long line at a store to check out without getting very woozy), neck and back pain, aching knees, and dry eyes that would unexpectedly and unexplainably start to tear violently sometimes when I was driving for more than an hour. Also, extremely sensitive teeth.
When Jonathan was a senior in high school, I got a job teaching English and it almost killed me.
Leading up to the job, I'd started to have some trouble with diarrhea. Once I started the job, the diarrhea became severe. I couldn't keep anything in me. I ate just enough (tea and yogurt mostly) to get me through a day at school. I'd have to time my yogurt cups so that I could run out of my classroom during study halls and not during classes I needed to teach. I tried to eat as little as possible to enable myself to have as few runs to the restroom as possible, but I still ended up in the school bathroom at least 3 times a day. This was every day. Literally, every day. No hyperbole here.
I ate most of my food after I got home, because I was starving. The result: I was up multiple times every night with diarrhea. When I arose at 6:30 a.m. to head out for another day at school, I was never rested at all, especially since I was up past midnight most nights trying to grade and to get my lesson plans in line for four different classes (7th grade English, 8th grade Bible, 9th grade English and 10th grade English -- my first year ever teaching, no set curriculum to work from).
I had diarrhea from May 2012 through August 2013. It was worst while I was teaching, September 2012 through January 2013. I lost 11 pounds. When I quit teaching, the diarrhea continued, but I was just so happy to be at home with it rather than at school with it, I almost felt as though I was healed.
During that time, I also developed a pain in the fronts of my shoulders, in that indented area between your shoulders and your front ribs. it was intense. We wondered if it was rotator cuffs. It hurt right down into my arms, sometimes to my elbows, but was worst in the indented area. Things that hurt included: putting my arms into sleeves, trying to close the back of the van, and trying to find a comfortable position in which to sleep (there was none).
My wrists also became painful during that time, which I noticed most often when exiting school by pushing on the crash bar. However, this pain was what I would classify as "bearable," whereas the pain in my shoulders was nearly unbearable, so I didn't pay much attention to the pain in my wrists. Once I was at the doctor and the nurses were feeling my joints. They were squeezing and twisting, and working over my wrists. Finally one of them asked me, "Doesn't that hurt?" When she called my attention to it, I realized that it definitely was hurting, actually pretty sharply. But I was so used to ignoring it, it had not registered until she pointed it out. I said, "Yes! It does hurt!" She said, "I would think so. The joint is quite swollen."
A sad story: often at home with the kids, instead of recognizing that I was in pain, I would just get crabby. I'd lash out at them, and they'd flee the kitchen, leaving me to work alone (as I deserved). But strangely, often David would recognize that I was in pain when I did not realize it myself. He would come behind me and start rubbing my neck, and the relief that flowed through my body would just make me physically sort of deflate, although I was generally able to keep from crying. He was not afraid of me. He was sympathetic.
Anyhow, I didn't get to the doctor until after I quit teaching in January 2013. He started running every test known to mankind in connection with diarrhea, except he didn't order a colonoscopy, which I thought was weird (but I didn't complain).
In the meantime (I forgot to mention) I was getting extremely heavy menstrual periods for 7-9 days, every three weeks. Literally, more than 1/3 of my life was consumed with bleeding.
By the time I was diagnosed with lupus, I was quite anemic, on top of everything else.
The day the doctor called and told me I had lupus, I was actually relieved. It didn't feel like a sentence, it felt like an answer. It's lupus. There's a reason why I feel sick. There's a reason why I am always so tired. There is medicine. This was in March 2013. The doctor told me that I had lupus, that I'd need to take hydroxychloroquine for the rest of my life, and that it would take 2-3 months on the medicine before I noticed results. He said I should take 400 mg per day, but that it is upsetting to the stomach, so I might want to start out with 200 mg. and see how it went (I still had constant diarrhea). I never went up to 400 mg. but sometimes I take a pill in the morning if I suspect that I forgot my pill the night before, and I don't worry if I accidentally got a double dose. Double is better than missed.
I started on 200 mg. and within two weeks, the pain in the fronts of my shoulders had subsided. I could finally sleep! After a few months on hydroxychloroquine, I noticed that when we had a weekend trip (like to take kids to college), I was bouncing back much faster, feeling normal after a day at home, rather than being knocked back for a full week as I used to be.
We had to sell our house and move across the country between May 2013 and August 2013. It was a very stressful time, especially the last week of July 2013. However, I did survive. I made it. Very oddly, the day we arrived in our house here, my diarrhea shut off. Just like that. I have no idea what caused me to have diarrhea for 14 months, or what suddenly stopped it.
In October, on Halloween, I had a breast biopsy to check some suspicious lumps (they were benign!), and on December 5, 2013, I had a hysterectomy. I believe that the hysterectomy has helped with the anemia due to mitigated blood loss.
I had a severe stomach flu two weeks after the surgery and dropped back down to-- well, I'm not sure. I don't know where our scale is since we moved. But all my pants fall off me now, and even the tightest hole on my belt buckles is loose on me. Yesterday I wore yoga pants and reveled in the fact that they didn't fall down OR require a belt!
We aren't completely settled in our new house yet, and we've been going through a kitchen remodel, which has been quite a bit more stressful than we had anticipated. But that's pretty much my story up to this point.
The latest developments are probably fuzzy brain (I have trouble keeping track of my medical records because I can never remember the passwords to my accounts online), and increased stiffness after I spend time reading or studying or working on the computer. I also suffer quite a lot from being cold. I've been trying to avoid gluten, and I find that if I cheat on that now, I tend to get a migraine or have my lower back "go out" shortly after the cheat. Recently, my eyes and neck have been giving me less trouble.
Sometimes I feel very thankful that my lupus is as mild as it is. I am pretty used to the way I feel, and I don't expect to feel different. I don't expect to be able to do things that require great outpourings of energy and physical activity. I am grateful for the sun that shines and the air that I can breathe. I am grateful when I can go for a walk, or relax with a cup of creamy, hot tea. I am grateful for bananas and kefir and all of the things I can eat that fill my belly and make it feel nice. I am grateful for a warm house and a comfortable bed. I am thankful that I can look forward to eternity with a restored, healthy body. It's going to be okay.
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