Everybody who reads my blog, my Facebook postings, or lots of posts I make on the web knows by now that I have SLE (lupus). Some of you know lupus patients, and you know that the disease can range from pretty mild to a day in hell. Others might get tired of hearing about it. You can check out now, or you can keep reading and learn something.Lupus patients show courage every day they are alive. If they can get their children off to school on time, despite aching joints, exhaustion at a level that it is difficult to convey, or whatever other symptoms the particular patient is coping with, it is the equivalent of lifting a car off someone trapped under it. For some patients, just the fact of waking up is a victory over the disease that is trying to kill them. We become masters and mistresses of everyday joy.So I want to share with you a few of my everyday joys from recent days. When I was a younger woman, and healthier, these events would not have given me a tiny scintilla of joy.I have been painting the interior of a medicine chest in my new bathroom. We accidentally picked up one that was fake wood interior instead of white. Can't take it back. So I decided to paint it with one of the little cans of paint I picked up for $0.50 at Home Depot. I can only stand up to paint to for 2-3 minutes. Some days I could not paint. Every day that I could stand up long enough to paint. I put a brush-load or two in that cabinet. It has taken my about two weeks to get almost finished painting that cabinet with that little pint of paint. Every time I put another brush-load on, joy surged through my body. I could not be happier if I won a major marathon.
I feel the same joy when I can mop the bathroom floor, fold a pile of laundry, or work outside in my yard. Everything I CAN do is a joy to me. Because I am still here. I can make stupid jokes with my husband. Tell my brother I love him. Talk to my cousins on the phone. Smell the sweet olive tree in my backyard and remember walking along the street with my mother in Opelousas when I was two.
Take the time to feel the joy inherent in little things. Whether you are well, young, old, disabled -- the secret to real joy is the little things. There was a beautiful sunset the other night. Did you see it?
I have been living on borrowed time for a long time. Every day since that man in the pickup crossed into my lane and smashed head on into my MG Midget convertible at about 45 mph. Yes, the top was down. When I saw that even my evasion efforts of pulling off into the breakdown lane were not going to prevent the accident, that having slowed my vehicle to almost 0 and pulled the emergency break. I threw my upper body sideways into the other seat, took my feet off the pedals, and thanked God for the many opportunities I had had in life and the many good people I had met.
The MG did not survive. Nor did my pantyhose. When I sat up in the driver's seat, after hearing the truck door slam and the man yelling "I've killed her. I've killed her, OMG I've killed her," I thought he was going to have a heart attack. I had a small cut and bruise on my left knee where it banged against the knob that rolled the window up and down. Even the police officer could not believe I wasn't dead, much less barely scratched. That is the moment I knew God had some purpose in life for me. I had no idea then what that purpose was. I still do not.
Even that day, unbeknownst to me, lupus had begun to destroy my body. That was almost thirty years ago. Lately, I have begun to think my borrowed time is running out. That whatever task God had in mind for me has been accomplished, even though I lack the foggiest.
Most days I feel too tired to go outside to my garden, or even to sit at this keyboard and write. I'm weaning off prednisone, because it will take 5 years off my life if I don't, and it's not controlling the lupus. I see my doctor in a few days, and I am expecting bad news on my test results. Inside, I just know something is not right.
I will not subject you to a litany of the pain that is now with me day in and day out. I will only say that most days, at some point in the day, I end up crying from it. I lay in bed and moan, because I cannot make it go away without taking prescription pain killers, and I do not want to die an addict, even though I know that eventually, I probably will.
There are still so many things I want to do, to see, and I know I never will. Some of them are big things, like seeing Sweden before I die. Some are tiny, like cleaning out a drawer, but I am too exhausted even for that.
Mostly I read and watch movies or British TV shows. People exhaust me, even those I love the most. Putting on that stoic face to keep from crying, or moaning, or screaming has become enervating. Putting up with those that irritate me has become impossible.
The real problem is that I do not know how this stage will take. Will it drag out several years, with my family and friends growing more and more agonized by my pain? Months? Weeks?
Or is this not what I believe it to be, but just lupus playing with my body chemistry? Having been clinically depressed, I know this is not depression. I can feel joy in simply touching my husband's cheek, or petting my stubborn, narcissistic cat, and laughing at her narcissism.
No, this is something else. It feels like goodbye, like my body telling my spirit "I want a divorce." I don't think my spirit was expecting it.
If you're wondering where I've been lately, I have been outside working to bring my yard into compliance with the desires of my "neighbors." I use this term exceedingly loosely because there is nothing truly neighborly about them. Mind you, I wouldn't care if they went about their lives and let me go about mine. What I object to is that they never come to see if they can help, they just cowardly tattle to the teacher (in this case the City of Houston) when I don't meet their OCD, anally retentive, control issues sense of what things could be like.
To be honest, I don't many of them by name. What I do know is that most of them arrived in this neighborhood after I did. When I arrived in June of 1957, most of this area was still woods, open fields, or farm land. I heard coyotes howling at night. there were bats swooping out of the sky to eat the mosquitoes, lightening bugs, and yes the odd rattlesnake in our yard. What do you expect? Immediately behind our house were acres of piney woods. I reckon I learned to dispatch a rattler to meet his maker with a garden hoe by the time I was 6.
These people can call in anonymously and get me in trouble -- threats of liens and big bills from the city to clean up my land. Let me make it clear. I don't have 2 or three junked up cars sitting out front. It's just that we had a drought last summer, which allowed bermuda grass (where the heck that came from, I have no idea) and some weeds (ditto -- I know I didn't sow 'em) that got GASP över nine inches tall! Some weeds, not a whole yard full. The grass was about three inches tall. We have been battling to get the yard in shape ever since last fall when the drought and pine bark beetles took out six of the large pines which were living here when I arrived.
I cannot describe how seriously the stress of the threat, along with the hours of physical labor, has impacted my health. I'm not supposed to be out in the sun. So I found shaded areas where I could work. We do not have thousands of dollars to spend on this project, so my husband and I are doing it mostly by ourselves. My brother did provide some money to pay for tools and maintenance supplies for them, and for some temporary labor. The latest purchase today was a 48"two man crosscut saw. We needed this to cut up the REALLY big logs. These are 6-8' lengths of loblolly pines, all upwards of 55 years old. Some of them were probably in the 75-100 year old range.
What I can tell you is that every joint in my body aches, and I am so tired that I fell asleep outside several times over the last couple of days while working. I have chopped two or three brush piles into mulch. What looks like a huge brush pile reduces to about 1 cubic yard of mulch. I did this with a set of pruning shears. I have also sawn up, with a bow saw, about a dozen or so branches 3-6" in diameter. We did find a bargain on a chipper/shredder which takes anything up to 1-1/4"diameter, so I spent a few hours feeding that as well. Anything over 6" and under a foot in diameter gets the chainsaw. My husband does that. Anything over a foot is gonna get the crosscut saw.
There's another solid week, two weeks of work to be done, and I'd appreciate any prayers you care to offer for the strength to keep on keeping on. I was barely walking this morning. I worked until the bottom dropped out of the clouds and then I came inside. I gotta admit that I didn't get as much work done today, because I hurt so badly every time I pull the pruning shears shut to cut a limb that I have to stop and will the pain away.
I have decided a couple of things. One, I am going to find the money to put privacy screening -- like they have on tennis courts -- around my backyard. I have a couple to the south of me that have been calling the city on us for forty years. Complete assholes the pair of them. She's a nosey gossipy pretentious cow whom I have done my best to avoid since her family moved in around 1960. He's so compulsive he went outdoors in very hot weather to mow his 1 1/2"buzz cut lawn to 1/2"one year and had a heart attack. I don't want this for my husband. They also violated the city's water rationing last year to keep their freaking lawn green! I resented this because when I went to take a shower I was lucky to get water at all. Did I call the city on them? Noooooooo. Nor on the other neighbors who were also violating the restrictions. I'm not the kind of person who tattles, snitches or looks for ways to make life difficult for other people, even when they do it to me. However, when I take all these sawn up pieces of my old friends the trees to create bed edgings, I am going to place some in this pattern facing their plate glass window: n9m. Maybe I'll make it a recurring pattern. They steal my Meyer lemons every year anyway.
Behind me is another jewel of a neighbor. He came to the fence to talk to my husband one day. He wanted us to cut down all the yaupons that make up our back hedge "because they drop leaves in my yard." "It sure would help me out," he says. When my husband told me, I gave a few minutes thought to remembering what he'd done to help us out. Since I came up empty, I let my husband's answer to them stand "Feel free to cut off the branches on your side of the fence."" This OCD also wanted us to cut down a pine tree in OUR YARD because it dropped needles on his yard. We offered to rake them up, but he said no, that tree was going to come down in a windstorm some day, and it should come down. He'd pay for it. This exchange occurred while we were cutting down the dead trees and that was one of the two living pines left. Then he started in ragging us about the pine logs two days after they were cut. Since he's not my boss, or my father, or anyone whose opinion about anything means a damn to me, I ignored him.. Privacy screen him out too!.
To the north, the neighbors aren't so bad. Her grandfather was a pain in the ass when he lived there, but we made our peace with her mother, and she and her husband, while they have some annoyingly noisy dogs seem to be pretty good hearted live and let live people.
The other thing I decided is that modern Americans are woosies that our Founding Fathers would be ashamed of. I have a deeper appreciation of those brave souls who entered the deep woods, swamps, and such over Carolina, Virginia, Georgia way and hacked down all those trees by hand and made them into log cabins, tool sheds, barns and the like. It's damned hard work! And I didn't have to take down the 90' trees by hand either! I'm trying to imagine what would have happened in 1730 if someone had called all his neighbors together and said "Let's implement something called deed restrictions that mandate everyone having a St. Augustine lawn in front of their cabin, and not letting any weeds get over 9" tall on their land nor having any undergrowth over 9"tall. Oh and no dead, decaying vegetable matter such as leaves or pine needles or fallen twigs." I swear I hear laughter and calls for commitment to the state asylum for the insane!
On the bright side, I got to watch a number of lovely songbirds flitting about my trees in my little glade on my NW corner. Lizards, skinks, anoles, and even a bunny live in my overgrown area. Not a pet rabbit, but a wild one. I haven't seen much of him while I've been working ; I think he's afraid of us. My husband put out some rabbit food for him though. Sadly, my bees have departed, probably as a result of the heavy spring rains. I have a clematis virginia, known also as Virgin's Bower Flower on my north gate, in full, luscious bloom.
I've also made a couple of vine birdhouses when I take a break. One-and-a-half really, but I'll get it finished. Now I have to get in bed before I fall apart.
If you have been reading my blog, or any of my pages, or my Facebook page, you know that I have SLE (Systemic Lupus Erythmatosis). What you may not realize is that this is primarily "a woman's disease," as 90% of the patients are women. Most of them are 15 -45, the childbearing years. For some enlightening information about pregnancy and lupus, please read this study in Japan about pregnancy outcomes and lupus .Women of color, across the board have higher rates than white women. I once had a former Texas benefits evaluator tell me that "lupus is a made up disease by people who are too lazy to work." To me, it was clear he was referring to Black women. Black women have higher death rates from breast and cervical cancer, higher rates of STD's and teen pregnancies, higher infant mortanlity. SOURCE: Debunking the myth. Black women, Hispanic women, Native American women all have higher rates of lupus. Black women have more severe outcomes more often. Poor women without health insurance have a harder time getting the help they need to treat lupus. SOURCE: Lupus Fact sheetFor some information about lupus symptoms in general, please read this article about two lupus patients. My diagnosis was originally made by a gynecologist to whom I had gone for a simple pap smear. At the time, I had health insurance. I no longer have health insurance, and my best option for pap smears is Planned Parenthood. Read one woman's story about not affording to go anywhere but Planned Parenthood. Please make yourself aware of two FACTS:
1. NOT ONE TAXPAYER DOLLAR GOES TO ABORTION. That has been prohibited since the 1970s.
2. Abortions are only 3% of their services FACT SHEET HERE
Finally, let's talk about SOCIAL SECURITY and Disability and Social Security Supplemental Income. I worked from age 15 until about 40. I've been fighting to get SSDI so I can get Medicare to cover my lupus medications. First they told me I ought to be able to work (in 1995) because I am educated. Know many employers who want employees who fall asleep on the job, or who miss work frequently because they cannot drag themselves out of bed and stay awake long enough to bathe, dress, and get to work? Or who catch the flu and the miss weeks because the immunosuppressant drugs they take for lupus don't fight the flu well and leave them with bronchitism pneumonia and a lupus flare in which their joints swell and cause agonizing pain? If so, please send those employers my way! I'd love to work, use my brain again for pay. Of course, it has to be low stress and pretty free of deadlines, because stress makes my lupus worse, and I never know which day I'm going to wake up and be unable to stay awake -- which makes it difficult to meet those deadlines. See this blog
for another person's perspective.
The next time I applied for SSI/SSDI they told me my $3000+ savings account made me ineligible for SSI and I no longer had enough qualifying quarters for SSDI. I appealled and they told me I wasn't disabled! NOIT DISABLED? I cannot shop without either my husband pushing me in the wheelchair or an electric cart. Some days my knees hurt so badly the 8' from my bed to the toilet has me in tears. I cannot stand in lines for more than 30 seconds without the knees and hips begging me to sit down. That's not disabled?
Now their story is that we cannot prove I was disabled WHILE I STILL HAD ENOUGH QUALIFYING QUARTERS. THEY have the 1995 records with the doctors names, but OOPS I can no longer get those records because the doctors who made the disagnosis, and who treated me, destroyed the records 10 years after my last visit. I'm SURE those records are in the SS records; they just demand that I produce them, knowing I can't.
So now I'm still 5 years too young for SS and Medicare. What if they raise the retirement age? First how will we tap into our retirement accounts without penalty to pay for medical expenses? I will NEVER see my SS money that I paid into the system all those years I worked (sometimes at 2-3 jobs at a time!). I WILL NOT LIVE LONG ENOUGH!
Let me repeat that I WILL NOT LIVE LONG ENOUGH! I can no longer take Methotrexate because my platelet levels drop too low and I am in danger of bleeding to death internally. The prednisone I have been on for over a year now will, according to my rheumatologist "take five years off your life." It also induced Type II diabetes, which is implicated in heart disease, even if I didn't have the extra clotting factor from lupus. The Hydorxychloroquine (Plaquanil) no longer controls the disease by itself. I also cannot take aspirin, NSAIDs like ibuprofen. So I take ginger and turmeric for the constant pain. Some days it works, some days it doesn't work so well. I need Ben Lysta, according to my rheumatologist, but she's not going to administer it. It's about $2000-$3000 a pop. I think it's once a month. I tried to get onto a drug trial, but the diagnoses (both of which I think are wrong) the county hospital gave me of non-alcoholic cirrhosis and heart failure keep me out of the trial. I need a liver biopsy to rule out the cirrhosis, and an echocarcdogram for the heart failure.
My only hope is Obama's health care plan, because I could not be denied coverage for pre-existing conditions. If I cannot afford the private health insurance or the high risk pool insurance, I could, as I understand it, get Medicare without having to be on SS, SSI, or SSDI. So think twice before you pull the lever for someone who wants to repeal Obamacare; that lever pull will be a death sentence for me and many others with my illness or others like it. Of course, it you want to be a good, compassionate Christian, you can send me money at PayPal to help with my medical expenses. Leave a comment on this website and I'll send you my email. They are. or would, if I were seeing the doctors I need to see and taking the meds I need to take run from $3000 in a good year for routine meds and visits and tests to upwards of $24,000 if I had to be hospitalized. My brother is currently supporting us and paying our medical expenses. He's nearing retirement age. He spent years paying for our mother's needs because her SS didn't cover the utilities, food, out of pocket medical expenses. Now he has us, and his own family.
SO please look into your heart and see if you want to pull my plug by voting to kill "Obamacare
After 8 hours of sleep, I feel like road kill that still has a working brain and all six senses. Don't get the wrong impression! I'm not screaming in pain. It's not "sprain your ankle" pain. It's not "someone keeps sticking huge knives into my joints" pain. It's more "someone bruised every muscle in my body with a nerf bat" pain. All my joints are stiff. Frankenstein is more graceful than I am today. I'm not complaining; I'm deeply grateful it is NOT "sprain your ankle pain" in every joint in my body. I've had those days. They made me lay in bed and cry.
Nor am I having a pity party. I'm sitting in front of a space heater, despite a warm day, because the heat seems to "melt" the stiffness. I have things I want to do today. As long as I am alive, I will fight back., fight on.
What I am doing is trying to help people understand SLE. Yesterday I spent at Lowe's and Michael's, shopping for items for my bathroom renovation and a crafts project. Then I closed the daylight down by raking leaves and using them to layout my front garden. These I covered with heavier mulch from my dead pine trees pile, to keep them from blowing back over the yard. Mulch is a wonderful thing. It holds water in droughts, keeps roots warmer in cold snaps, and eventually breaks down and feeds the soil. Also, for me, it's an easy way to weed. A 3-5" layer will actually kill off the weeds and Bermuda grass. So it's a labor-saving technique as well. I need that kind of help.
Undoubtedly, due to my photosensitivity, part of what is behind my aches today is having been out in the sun, even though my raking was done late in the day when most of the area I was working on was in shade. Just the drive to Lowe's and Michael's in the bright sun was enough to set off the fatigue and aches. Lupus is like this. One has good days, not so good days, bad days, and awful days.
Everyday tasks like getting dressed, taking a shower, even getting out of bed take longer almost every day. When I stand up from my bed or chair, I have to just stand there for awhile, sometimes as long as a minute or two, because the joints simply don't want to bend. In case you haven't noticed, they gotta move to walk. The 10' or so from my bed to the bathroom can take nearly a minute once I do start to move. Going to the kitchen to fix a bowl of cold cereal takes 3-4 minutes sometimes.
So why do I care whether other people understand my illness? It is not just me. It's a million Americans with lupus. Most of us don't "look sick." 90% of us are women. African-American women are 3 times more likely to develop lupus. They have an earlier onset, on the average, and more severe symptoms. Many people who do not understand the disease take us for being lazy or unwilling to work. Others expect us to perform at the same level as people without illness. A Social Sedcurity paid doctor I was sent to see in about 1995 during the application for SSDI said I should be able to work because I was "educated." OK, he had a point in that nothing was wrong with my mind. Still isn't anything wrong with my mind (although some lupus patients do suffer from brain involvement). What he ignored were the following facts:
1. Sudden, overwhelming fatigue made me prone to falling asleep at work, even after a full night of sleep. Employers love
that SOOOOOOO much! Another thing they love is employees who run out of steam, regularly, after anywhere from 2 hrs
after starting the work day to 6 hours. I haven't seen many workplaces with nap rooms, have you? Driving is hazardous
when you fall asleep abruptly too. Then there were the days I made it through the workday, only to walk to my car and fall
asleep as soon as I sat down, too tired to drive home.
2. Unpredictability about when the really bad days will happen. I worked as a programmer for IBM. One thing programmers
live with is deadlines, as do many other occupations. So naturally employers are just wild about having employees who
might have to cancel the last day before a deadline due to the inability to get out of bed, get dressed and get to work
because of pain and fatigue. What do you do when all those little joints in your feet are so swollen that you cannot put
shoes on your feet?
3. IBM was also big on meetings. The facility I worked in was huge, and the meetings were often at the other end of the
building. How do I get there when I don't have a motorized wheelchair and I cannot propel myself because my shoulders
are aching, and the effort wears me out? Even on days I could walk to the meeting, by the time I walk there, I was
exhausted, making focussing difficult and sometimes resulting falling asleep during the meeting. The little twerp who was
my supervisor (and he was a twerp) was sitting beside me once when this happened. I think his assumption was that I had
been up late the night before drinking or doing drugs. Not that he ever asked. Not that I could have told him either because
at the time of this incident, my lupus wasn't diagnosed yet. I knew SOMETHING was wrong with me, as I have always been
in tune with what was happening in my body, but not WHAT.
4. The onset of the fatigue, the pain is sudden and unpredictable. I would go to work feeling fine, in those early days, and
suddenly I would be too pooped to pop, or in such agonizing pain all I wanted was to get home, take some ibuprofen and
go to sleep until the pain stopped. I certainly was no longer capable of productive work. Employers don't like that.
5. Other people were dangers to me, especially people with children. Shocking to say, but there are those who go to work
with the flu, or whose children have the flu, and they are carrying the virus. Exposure to them was dangerous to me. A flu
episode could set off days, or weeks or even months of fatigue and/or pain beyond the level I had learned to live with. Every
flu episode had the potential to develop into chronic bronchitis or pneumonia. Employers don't like people who are out sick
often. These days, they don't like people whose healthcare costs are high.
I actually had a former welfare department worker (in charge of assessments of eligibility) tell me in an AOL chat room that he thought "lupus was a made up illness used by lazy people as an excuse not to work." This was around 2004, and it was clear to me that he was speaking primarily about Black applicants. He never met the beautiful sister of my friend Theola Petteway, diagnosed with lupus at 14 and dead from it at 26. He never saw her, as I did, laying in her bed sobbing from pain, with both her sister and I helpless to ease the pain. He never saw her struggling to work as long as she could, as often as she could. He never saw her applying for welfare either, because when she could no longer earn enough to support herself, her family, in particular Theola, supported her. He never saw me as an applicant either, because my family supported and continues to support me. However, for every Black woman who found herself with no other resources to care for her child(ren) after being diagnosed with lupus and had to sit before him listening to him spout his ignorant, racist crap, I hope he rots in hell on earth and then in Hell after death.
The hardest part of SLE sometimes is not the illness itself. It is the incomprehension of others. The expectations. The assumptions about our character. The humiliation they seem to expect us to accept in order to get healthcare, disability, employment, financial support. The hardest part is having a world that neither understands and acce