Can't Stop Change- some cliches are true

So, like so many people in their 40s I feel an obligation to help my Mom (she is 70) and help her with her yard even though we have our own yard to deal with. I am part of the " sandwich generation" , we are the people taking care of our own kids and at least one parent, at the same time. It is hard. I love my Mom, she has a great house and a beautiful garden. The problem is A. : I have lupus and took so many steroids two days ago I did not even count out a dosage, I just knew taking pain meds every fucking hour was not going to work . B. We live 40 minutes away from my Mom. and C. I can barely get my kids and self to work in OUR yard! There is no fix here. We probably won"t move closer to my Mom, I don't believe in miraculous healing and it just IS. See, but that is what sucks about this particular quandry. No answer! I think this is a metaphor for life. Some things just are. I realize that there are "real" caretakers out there, and I know I am not one of them. My Mom and Mother -in- law are still working and in good health. I do fear that could change at any time. Alas, something else which is out of my control !

Big excitement for me! The pharmeceutical company has taken great pity on me and through "compassionate care" I am getting the drug Rituxan paid for for a year. Yep, the mouse drug! There was some trepidation (not about being injected with mouse protein, nope; good with that!) but about whether the actual infusion would be paid for, but my insurace says ok! Normally I would be caring on about the heartless capitalistic bastards who run drug and insurance companies for obscene profit, but, for once, I am just grateful. Seriously, I would injest moose urine while being hung upside down if someone (medically related) told me it would help.
Desperation is almost palpable.

I just went to Ace Hardware/ Hallmark store and it was disgusting. When did convenience become so overwhelming? Should a "so called" hardware store have cards with kittens on them, kitchen accessories and women's purses? How is that hardware? I remember going to hardware stores with my Dad when I was a kid. It was like entering some Men's Only inner sanctum. All of the tools were lined up neatly on the walls or in organized bins of nails or drill bits. I always thought it was such a big deal to be there, my Dad was great with the old guys in their hardware store aprons sharing their knowledge of tools. Now every store has to be Walmart-ish. Every store has all kinds of shit that we probably do not need.

My oldest kid is getting a summer job. He will be 16 in July. I just realized what this ranting is about: I really hate change. I know my Mom has to age, its a normal process of life. I know my son has to grow up and take part in the world, without me, in order to thrive. It is no less scary knowing all of this. I guess it just is.

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Drug Testing

A few weeks ago I went to my "pain doctor", yep, there is actually a specialty in pain medicine. It seems kind of funny because I would think most doctors see patients with pain, right? I think that pain specialists must just have more patience for whining. At least my guy does. We will call him Dr. C. I love Dr. C, he has putting up with me for over ten years, longer than some marriages last. Doctors who treat people with chronic illnesses have to form some kind of relationship with their patients since they are often with them for years and years. Slice and dice surgeon-types probably would not have the tenacity to deal with the chronically ill, they mostly seem to want to cut out whatever shouldn't be in their patients' body and pawn off the whining sicky to the next guy. I don't blame them. If I get sick of myself complaining I wonder how my doctors feel? It must get old.
Anyway, Dr C is cool. The only thing is that he is a Republican. Every time I go in (as the Obama health plan gets closer to being a done deal, or is it? I am not that sure) to see C he broods more and more gloom and doom about the "future of health care"..Now I am no genius but I can definitely tell that the deal with my health care sucks. And I have it pretty good. I don't know how to fix it, but I think one thing might help, get all the greedy sons of bitches out of it. Health care for profit is a disgusting idea. Hospitals can't be run like Walmart or factories. Dr. C is a compassionate guy which makes it strange that he has chosen that political leaning.
But anyway, I did not really start writing to talk about "the state of health care" . No what I wanted to talk about was drug testing.
I went to C's office and ,for the first time, his nurse asked me to pee in a cup. This is standard for a lot of my docs to ask of me but I never had to do this at his office. So, being the curious gal I am I asked, "why the pee cup?" His nurse told me that they have started testing the patients because they want to make sure we are taking are meds. Some of the patients, apparently, have been selling their drugs. I thought this was hilarious! Not the drug selling, but the fact that I was being drug tested to make sure I am taking drugs! Oh irony of ironies!
At the chronic pain doctor office the staff has kind of a reserved disdain for the patients. Not the docs, just everyone else. That treat all the patients as addicts (I am not saying that some aren't but we are not all there to score) I think this is why this particular office has the worst magazines. The last time I was there the only thing to read was Popular Mechanics. I don't know anyone who reads that, in the world, really. The office staff thinks we will steal the mags. I don't think the patients at C's office are any more likely to steal magazines than someone at an obstetrician's office. Its a bad rap we get, being viewed as whining wussy addicts. It was definitely worth it going just to get the pee test, though. Life just keeps getting funnier!

The week I turned 40 I lost a tooth and wrecked my car, in two separate unrelated scenarios. When you are six or seven losing a tooth is adorable, at 4o the same look is trailer park scary.I have been extremely defensive about losing this tooth. I do brush and I don't have any major periodontal disease. For the record the tooth had to come out because I go an infection in my gum over the only tooth in my whole head that did not have any root. I mean really, what are the odds? In place of the gaping hole my dentist put a fake tooth connected to a retainer. Yes a retainer just like I had in seventh grade. The fake tooth/retainer thing is a total pain in the ass. It falls out if I laugh too hard(literally it has flown out of my mouth, really embarrassing), eating has become a complicated and tasteless activity and there is no gum chewing. I really love gum. The fake tooth thing has a cute name, they call it a "flipper", making one think of happy aquatic animals. It is NOT cute. It is supposed to be temporary even though it costs $250. It is also extremely wimpy. Since June I have broken three of these flippers. Permanent replacement of teeth, it turns out, is obscenely expensive. Dental insurances do not think that tooth replacement is a necessity. If they could see my husband laughing at my gap toothed grimace (I certainly don't smile ) perhaps they would then see the necessity for a replacement.
This whole experience has been demeaning and anxiety provoking. In the past my face has blown up to the size of a prize winning county fair pumpkin(thanks to steroids),and I have huge unsightly scars due to a knee replacement (look forward to that story in a future blog!), I have had bouts of bright red rashes all over my body but the missing tooth has been the most confidence crushing of all of these looks.
The first time the fake tooth broke I hid in my house for a whole week until the new one came in. That weekend the replacement broke. They sent it back to the lab to try to repair it. It broke again and is now down to the tooth and a tiny piece of plastic, the whole thing is no bigger than the size of a chicklet. I tried to repair it with my son's airplane glue, which I am pretty sure is toxic but still better than going out toothless. I am afraid that I might swallow it but wear it nevertheless. It has now come down to me holding the crappy fake tooth up with my tongue and only wearing it for "special occasions". This is so wrong and almost feels conspiracy-ish. I resent this whole dental nightmare. This only magnifies the obvious that started with me turning 40 and that is I am getting old !

Limitations Suck

Lupus is not always this charming companion that I live with. In point of fact, I would not ever refer to this hellish disease in such glowing terms. Sometimes living with Lupus means sleeping 12 to 14 hours a day, indescribable pain and wearing clothes that are passable as daytime wear and pajamas. The thing is, I really hate whining. I hate being a whiner, hearing myself whining and seeing the blank look that sometimes gets in my husband's eyes when I am in a whining state. Normally, when I am more sick than usual, I just shut down. I don't call friends or family and I don't go out. This is for others' benefit as well as my own because I figure if I can't even stand myself complaining who else will be able to? I consider myself somewhat creative and witty but that part of me is stripped away when I am in a bad flare. I see it as a kind of flat lining, the exhaustion is so great during these periods where any effort beyond minimal daily functions is beyond me. This is when self hatred becomes a constant companion.
Rationally I know there is absolutely nothing I can do in these times of "super sickness" beyond waiting. I am terrible at waiting. I don't think I have ever, in 22 years of this bull shit disease, accepted that this is me. I have always thought that if I accept having Lupus then I am conceding to it. I want to be brave and take this all on with some dignity but there are days where I am anything but dignified. So invisible readers I truly hope you forgive me for blowing off this blog when I do not feel up to it. Sometimes it is better to keep my vitriol and self pity to myself, until it passes, because it always passes. One thing can be said of Lupus for sure, it ain't monotonous!
I went to my Animal Protector orientation and it was heartbreaking! They have 22 pit bulls there, some have been in the shelter for over a year. I have always loved dogs but I became even more of a PETA freak ( I mean freak in a good way)over the last few years. I have this fantasy that entails a big farmhouse with 13 dogs or so, as a sanctuary for cast offs, but I am quite aware of my limitations. When I can hardly take care of my own children I know I have no place taking on more pets. But I wish I could... I guess that is the theme of today's blog. I really hate having these limitations. I don't have the energy or well being to do so may things I would like to, and that pisses me off. My mother is 70 and still teaching full time as well as having a much more active social life than I do. Physical illness is seen as weakness. I know that is an image that our society has bolstered but I should know better than to buy into that crap, too. See, I don't see other people who have illnesses or disabilities as weak, just ME! I am looking forward to volunteering at the shelter, it will be good to focus on anything other than me.

Dog Vasectomies

My nuclear family consists of all males and me. All the dogs we have owned(and I use the term "own" loosely, they are family members) have all been male. Growing up we only had German Shorthair Pointers and only girls. My mother thought male dogs bathroom manners were unseemly. My husband did not share this notion, he wanted male dogs and I did not care. When the subject of getting our dog "fixed" came up I was met with tremendous hostility. My boys claimed that I would be taking the dogs' manhood. I disagreed and tried to explain responsible pet ownership and was sneered at, as if I was only making it up to torture our pets. For the first dogs' operation I was a little unprepared. Our own veterinarian charges obscene rates so I found a spay/neuter clinic. I was assured that the vets at the clinic were top notch and performed emergency vet services. I wanted to meet the vet so I went in to talk to him. I asked if the vasectomy was a complicated operation on dogs. He laughed. Not a in-your-face-you -freaking-idiot laugh, but he did laugh. I received the explanation that they do not perform vasectomies on dogs. No, the actual operation was a little more drastic. What did I know? As I said, I grew up with girl dogs!
Today I have taken our younger dog, Winston for his "procedure". I did not discuss this with our boys because I am a non confrontational, plus they had no say in it. I do not feel in any way empowered by taking my male dogs "manhood", I just feel like I crossed off my list another damn thing I had to do. Oh, and I feel like a very responsible pet owner. Bob Barker would be very proud of me.

I guess a disclaimer is appropriate, although late. I use a lot of swear words both in my everyday life and here on this blog. I noticed I could flag this for "adult content" but I don't want anyone thinking that I am way into pornography or anything. I just have a problem censoring my language. Mostly, I think it is how I deal with anger. There is nothing like screaming "fuck!"
to get your aggression out. My kids tell me that I use too many swear words, they are right. One of my dad's favorite sayings was, "Profane language is for the unintelligent, those who are not smart enough to come up with other words." My dad was an MIT graduate, I am definitely not as smart as him and I am too tired to come up with a new vocabulary. So, if you are reading this and end up offended, sorry. You really don't have to read this. It is not required.
I am proud to say that I am going to be a volunteer for Animal Protectors. They are a no kill shelter, otherwise I don't think I could handle it. Already I am emotionally preparing myself that I absolutely cannot bring home every dog there. This will be VERY hard. I love dogs. Cats are ok, but I love love love dogs. Probably more than people, no offense to those reading. I start as soon as they have a volunteer training.
For my sicky friends out there I have a blog you might be interested. This is dependent on the fact that anyone is actually reading this, other than my few friends that I have threatened with bodily harm if they don't read my blog! Anyway there is a blog called The Angry Pharmacist that is just wonderful! I was delighted to find that someone out there actually hates pharmaceutical reps as much as I do, maybe even more! I will tell why I think drug reps are the dregs of society: they are whores. They cart around their rolling fun box of whatever is the most costly drug that their company is touting at the time, and then they buy off the office staff with coffee and pastries to get in to see the doctors. After the drug whores spend the night before bleaching their teeth and memorizing the doctors' wives and childrens names they go in to our doctor offices bribing them with free pens and "conferences" in Florida. This is all to sell the drugs that just happen to be "the next great thing". Drug reps disgust me. The angry pharmacist makes some good points, and he or she is very funny.

Is it a question of intellect that I can quote endless movie lines but not one passage from a book? I don't think it is just me. My husband is also a pop culture quoter (is that a word?) and I don't think he has memorized anything from a book, poem or short story in his life,either. Yet we both can shout out lines from Raising Arizona, Sixteen Candles and Blazing Saddles. So is our (my) generation too dumb to memorize, can we only remember spoken word? This really bothers me because I am an avid reader. And why do we always say "avid reader" ? Why not voracious reader?
It is horribly boring to talk about weather and even worse to blog about weather but I will, anyway. It snowed, again. I know that I am not important enough to be singled out with this wrath of weather but it is really hard not to take personally because I hate it ! My joints are screaming in pain and there is not enough pain medicine in the world to cover me.

The commercials that are on during the shows I watch are indicative of one thing, I am really a 64 year old man. I know this because of the AARP life insurance, scooter/wheelchair, diabetic supplies(for free!) and erectial dysfunction ads that are on during all my favorite programs. This is my fault. I am obsessed with true crime like the show "the first 48" and I do love the History channel. I guess I am flattered that the commercials are not constantly telling me to sign up for an online school (since they think I am too old to go back to school) but I am sick of them asking about how much asbestos I have been subjected to and whether I think I have mesothelioma. February is a horrible month so I am going to cut myself some slack for watching so much television but it is reminding me that I might want to have a conversation with an actual human being.
Peripheral neuropathy is one of the shittiest symptoms ever! My left foot has not gotten warm in about 4 months and it is this cold searing pain (not just cold, that would be too simple). I am also loving the fact that I cannot control my own body temperature. I am either freezing or dripping with sweat and sometimes, just for fun, both at the same time! My mantra is : Lupus is fun, fun, fun! Really my mantra is: I ma sooo tired, can one die from being tired? That is a terrible mantra.
We received our six boxes of Girl Scout cookies yesterday and I am proud to say I had one. That is it! Seriously, only one. They are all Tagalongs even though I like the Thin Mints, also but I am not eating them, right? I have probably gained 10 pounds since being on 20 or more mg. of prednisone since October. Aagh! Miserable without end!

My husband had back surgery today and is fine. It was incredibly weird being there for him at the hospital doing the reassuring hand holding thing. (sorry babe if you are reading this, not at all implying wimpiness on your part). I realized that having surgery for me is normal. Then I thought to myself,"It really is not normal to consider having surgery as normal!" Yet, as a sickie, that is how I feel . Most hospitalizations feel pretty routine. The idea of someone being "fixable" is also odd to me. When one has a chronic illness there is no fixing. I clearly remember the first time a doctor told me that he was not really trying to make me better, more like just trying to "maintain" me and keep me from getting worse. That really goes against what medicine is supposed to do! I think most people consider their doctors as someone who can make them better. This is what is so messed up about chronic illnesses. I saw one of my orthopedic doctors when I was waiting for my husband to go into surgery. I mentioned to my husband's doctor that I see three of his colleagues in the same practice. He referred to me as a groupie. That is quite alarming yet true. Being a patient often feels like a full time job. It was interesting, for today, to not be about me!
I walked outside this morning and there was more snow, what a surprise (read: sarcasm). I hate winter. Like a little old lady I constantly worry about falling and having to get a third knee replacement. Falling is something I obsess about. I am 40 but feel like I am 92. The outside of me is just a facade. My dogs, on the other hand, love the snow and tunnel through the back yard making paths. They play like eight year old kids and have a blast. I wish I was a dog but only if I had an owner like myself. I am NOT the pack leader. My dogs are cute and therefore rule our house.
Medicare turned me down for the mouse drug. Rituxan is the actual name but it is so much more fun to call it The Mouse Drug. I am now filling out forms to have the drug company take pity on me. I know, the idea of drug companies having a conscience is absurd but desperation is called for. I am a little jaded. Now I have to wait and be patient. I am not good at patience.

I suppose I should explain "Eva In Wonderland". The blog title is mostly in reference to the mass of pharmeceuticals I ingest everyday. I loved Alice in Wonderland and Through the Looking Glass and the "Jabberwocky" poem I had memorized, at one time. Taking all these drugs constantly reminds me of the passage where Alice eats from one side of the mushroom and it makes her tall, the other side made her small. I feel controlled by the drugs and often wonder where I end and they begin. Where am I in the sea of drugs? The "relationship" I have with steroids has to be the strangest. I love and hate prednisone. Steroids are like an abusive boyfriend who beats the shit out of me, yet I just love him so much! No doubt, prednisone masks my pain, takes down swelling and gives me more energy. It also causes me to have 5 different sizes of clothing in my closet, rounds out my face in the form of a pumpkin and is ripping the hell out of my bones. I have avascular necrosis in my knee and both ankles. Sure, this could be partly due to the Lupus but it is the steroids, also. I am tapering off of 20 milligrams over the next 3 weeks. I know that it is the best thing, but I also know how hard it is to reduce the dosage. It is a Catch 22, damned if I do, damned if I don't. There was a time when having access to lots of drugs was a great thing, that time is not now! I guess that would be another irony.

I have been home with my sons for 4 days in a row thanks to being pummeled by a winter snowstorm. I love my kids as much as the next gal, really, but this is bordering on real pain. My sons are 15 and 11. Their idea of a morning greeting is by farting in my direction. They spend hours upon hours in the same pajama pants playing Call of Duty with invisible people. This is not conducive to "real and quality" family time. It is time for them to go back to school.
I wanted to mention that I am a vegetarian and that I hate mice. Alone these two statements probably don't sound like they have anything to do with one another. Not so ! At least not in the irony of chronic illnesses! See, there are these really neat super fancy drugs called monoclonal antibodies. They are sort of like designer drugs. The drug that my rheumatologist thinks might help me is made from mice protein(really, I can't make this up) and somehow it attacks my unhealthy cells (I don't really understand it) and well, whatever, is supposed to work better than the last 5 or so drugs I have been on. Normally the rights of animals are a big concern to me but, I think it is a sign from someone or something that I don't care at all about the rights of mice! First off, mice are sneaky. I can remember a certainly vivid prednisone induced psychosis when I was up sewing or talking to myself at 3 in the morning. If you have ever been on a high dose of steroids you know of which I speak. Anyway, there were mice rooting through the pantry, I could hear them just feet away from me. I would go look and they would be gone. I love dogs, cats, turtles, birds are ok but I don't want any for pets, but I hate, hate mice! If the pharmaceutical gods see fit I think I should be put on the mouse protein drug. It sure would be better than chemo and steroids,or maybe not. I would certainly like to get the chance to try it.
I wanted to let anyone know that could be reading this that I do not give advice. I think it has something to do with being diagnosed at 18 and not a very mature 18 year old at all.
Actually, I am not a particularly mature 40 year old, but that being said, I hate advice and try never to give or get it. So, if that is what you might be looking for in my blog, It ain't gonna happen! I will probably bitch about my symptoms, the crisis of America's Healthcare and other things but no advice.
I am saying all this on the illusion that someone might be actually reading this. Oh well, at least I can entertain myself with my ranting !

Introducing my blog.

Hey my name is Eva and I have been battling Lupus (an autoimmune disease) for 20 years and it sucks. I wanted to reach out to other people who have chronic illnesses and might want to vent, too. I am not here to give any any any advice whatsoever! I am hoping that there are other people who find the irony of chronic illnesses as oddly amusing as I do.