senile

I am 46 years old and I can't think for shit. I confused two people from high school with the same first name. The one girl (now woman) I used to see all the time because she cut hair in the chair right next to one of my good friends, we also used to go to bars and hang out. Sure, you are saying that was 30 years ago but there is more. My son repeatedly introduces the same friend to me because I can't remember any of his friends. I had my sister email her three kids' birthdates so I could put them in my phone with alarms and alerts. I say the same things over and over to family and friends. Best of all, my son told me I should be on a "smart pill' they made in a lab at Harvard, or something. I know everyone forgets, but this seems over the top. 

One of the symptoms Lupus patients complain of is a kind of "brain fog". I absolutely have that. Some days it feels like I am trying to wade through jello. My body is slowed down but my mind is, also. The worst is when I skip words. I have trouble getting words from my head to my mouth and getting them out! When this happens I get extremely anxious which only makes it worse. I cannot stand having attention drawn to myself. I try not to let Lupus define me but it is hard. Everyday there are the 17 drugs to remember, patches to put on, appointments attended to and made. It consumes a lot of my life and is hard to ignore. And then there is the pain. Chronic pain never ever ends. There are ony better days, hours or even minutes to hold onto. It is like a low hum sometimes and at other times it is a weight. At the worst I cannot think, make a decision, read, watch tv or interact with other. During those times I just pray I can sleep so, hopefully, when i wake up it is back to the low hum. 

My husband and I are the same age. True to middle age he is starting to have some mild arthritis. He apologizes when he complains about his pain because he says he knows that mine is so much worse. I don't like that the people around me think they cannot talk to me about their own pain. It's okay. You aren't me,and, because I love you, I sure as hell would not want you to be! That is what I want other people to know. It is no contest. We all have our own shit. Mine is just worse, just kidding.

Last week I spent some time with my oldest son, he is 21. After a long day he started complaining about being tired. I knew that his tiredness was self imposed due to a hangover. I yelled out, "welcome to my fucking world"! I felt badly afterward for saying that because right away he said he had no idea how I "do It" everyday. I don't want sympathy or to be pitied. It would just be nice if other people could acknowledge that most days for me are hard. I have Avascular Necrosis (meaning bone on bone) in three joints that we know of:ankles and left knee. My right knee, although I have had two knee replacements on it, still hurts all the time. I walk much better but it was no miracle cure. 

I am not trying to whine, I just would like some understanding. Also, please don't be afraid to talk to me about your real life and struggles . Any focus off of myself is a blessing!! Hopefully I remember who you are. 

Somebody's Baby

Today I lost my Grandma. She was 93 which is a long life, obviously.  The thing about grief is that the age does not matter. It does not matter that I am an adult and have experienced loss before.  It really does not matter that she lived a long and mostly healthy life. For those of us who are left behind it is still incredibly sad.  

I did not grow up knowing my grandparents. I was adopted as an infant so I did not get to meet them until adulthood. I was always a reminder of the past to them and, of regret. I was fortunate to have been raised in a loving home and all my needs were met. My adopted parents are fantastic loving and kind people but I still wanted to connect to my biological family.  I am always grateful they wanted to know me , also.  I am a parent now.  Because of that I know the decisions my grandparents and mother made all those years ago were heart wrenching.  Every chance I had I told them that I am happy and that I have had a blessed life.  I worried that, at times, my presence was a painful reminder to them. As both my grandparents got older they seemed to focus more and more on the past and regrets. I found this incredibly sad since I saw things so differently than they did.  To my mind they made the best decision they could and they did so out of love. 

To both my grandparents I represented a mixture of sadness and joy.  I don't think I was ever able to convince either of them that I became the best possible outcome. To them I could do no wrong even when evidence showed otherwise.  To be loved in this capacity is so comforting.  I always knew that they both would love me even if I really screwed things up! 

I will miss my Grandma but I was privileged to have gotten to know her.

As I left the home today there was a little old lady down the hall that was blasting music. The song was, "Somebody's Baby"- Jackson Browne.  It seemed so fitting because everyone IS somebody's baby and in the end that is what they go back to.  My Grandma lost her mother when she was quite young and I want to think they are together, again. Thank you Grandma Dede, I am the person I am today, because of you. It has been a gift to know you. 

I think I understand the rationale behind commune living. Since my day to day activity cannot be predicted I get the lure of wanting someone else there to do what I do on my shitty days. i would not be so stupid as to want to clone another "me" . right another person on the couch, where would the dogs lay down? No, what i need is a "Big Love" arrangement so another wife/Mom could pick up my slack. Rich people call this " help" and we are not in that tax bracket so I am still searching for another term, or situation. We are not Mormon so "sister wives" is out. DJ would not do well on a commune since he would have tp be in charge. Cole could not live with a bunch of hippies although Mason might dig the permissiveness and would probably enjoy debating some of our "brethren". No I can't see either of those as options.My mind goes to magical thinking when I start thinking about the Eva solution. I have such little faith in medicine that I consider conjuring a helper fairy more likely than me getting better.
On a good day i can do so many things! And when the big steroid guns are pulled out - just watch me go! I am amazing. The bull shit thing about that is it never lasts. I haven't actively tried to sell my jam in over 4 weeks. I am both embarassed and ashamed of my lack of commitment to my business. ti
he bottom line

Lupus fucks with me on a daily basis. Today I am thrilled to be going out with friends I have not seen in years, childhood friends that have been with me through so much. Even as I am so excited to go out with them in the same moment I wonder how I will manage to get through the evening. Having a chronic illness is humiliating. I wonder what my friends will think of my weight gain, how I will fake it through the pain and most of all why can't today be one of the good days? I get so sick of the focus being on Lupus and so tired of everything that goes with it. The endless tests, drugs and then more drugs and the surprising lack of answers. There is this misconception that modern medicine can solve everything and it is such bull shit. There might be a test to tell you what is wrong and why you might have that particular symptom but often there is no solution. My doctors treat my symtptoms to the best of their ability but there is no cure. The root of the problem is there, always mocking me and any plans I have. I feel like I have to have a fuck you attitude when it comes to Lupus. Without that bravado I am left with feelings I find unacceptable: anger, loneliness, alienation and hopelelessness. I can't accept that.
I cannot get below 15 mg. of prednisone without my whole life falling apart. I try to taper and end up with excruciating joint pain, crazy ass CNS symptoms and complete inertia. Tweaking my pain medication dosage messes with my head. Yet another irony of this illness is that the narcotics are less benign than the steroids and the chemo drugs yet, for me as an addict, I prefer more steroids to pain meds. This is a constant struggle. It is a cruel joke to be a recovering addict who requires pain medication to maintain some quality of life. I can never forget how it was and why I have to keep up this vigilance but I am not going to say it is easy.
My floor is covered in dog hair, garden needs weeded and I have about 14 loads of laundry to do. If I do any of these activities I run the risk of ruining my evening. So I am sitting here sulking about my inabilities. I could just as easily choose to rest languidly without guilt. I don't know why I do this. Martyrdom is so unattractive.
Ths is when having an imagination and some creativity come in handy. I am going to pretend to be someone else. This other person does not fret over uncompleted chores or weight gain. My imaginary persona does not let pain get her down or worry over the things she can't control. No, my pretend me is going to read a new novel and take some extra time picking out the best outfit. Pretend me has the "fuck Lupus" attitude down and is able to stop thinking when thoughts turn negative.

the visit

I was at the hospital today visiting my 90 year old Grandmother who is in there with the diagnosis Failure to Thrive. I take the meaning of that to be," I don't want to fucking live anymore". I am a coward. I have put off visiting her for months because she has dementia  and possibly Alzheimer's, who the hell knows the difference, but I did not visit because I was afraid she would not remember me.
Everyone should have some person in their life who considers you perfect. My Grandparents are those people to me. No matter how I fuck up they consider me the Second Coming in the form of Grace Kelly. I tried to think of some modern day woman that everyone considers almost saintly and, sadly, I could not think of one person. Anyway, my Grandparents looked past my obvious flaws of bumbling alcoholic and drug addict, my getting knocked up prior to marriage,my not even attempting to finish college..should I go on? The point  is no matter how I behaved they interpreted it as perfection!
Today my Grandmother is not the person she was. She shakes a lot and cries, she knew me but not the year or that she was even in the hospital. Little signs of life showed when she clearly wanted to feed herself when the aid was feeding her. I notice the nurses referring to her as "sweetie" or "honey", words you would use to address a small child. And it is no wonder when she barely speaks and can do so little for herself. My Grandmother is a very private person and I sat there hoping she was not aware of what was going on. In the span of my visit she was treated extremely well but I was chafing at the indignity of her current condition.
When I came home I sat in our rocking chair petting my cat and feeling the solace of holding this animal and hearing him purr, knowing this was his way of showing contentment. As I sat there I was thinking of what her doctor told me about dementia. If I understand her right the depression my Grandmother has been having and the dementia go hand in hand. She told me that my Grandmother's MRI showed changes in the brain caused by the dementia. This young and pretty doctor told me that my Grandmother is incapable of processing emotions like others do. What ends up happening is an affect that is totally flat. She no longer can feel the range of emotions that other people go through on an everyday basis: anger, excitement, happiness and contentedness. I told her that I thought that was terribly sad and she agreed. What is life if not emotion? How terrible it would be to only feel confusion, fear and sadness, since, ironically, these horrible emotions seem to somehow get through.  I wonder if this young and vibrant doctor often wonders if her end will be similar to those of these elderly patients she cares for.
After I got in my car I plugged my Iphone in to my music. I suck at computers so even though I was miraculously able to download some songs they seem to come on randomly and never what I try to pick.The song that came on was, "Ain't No Sunshine When She's Gone". My only thought was, yep, how appropriate.
I know I have to accept this that this shell of a person is who she has become but I don't think this is God's will or any of that shit. I love my Grandmother and I cherish how she has always loved me. I am grateful she knew who I was today, maybe she will when I go back to see her again. I really hope so.

How I deal

Let me list the ways I have dealt with pain in the last couple months: I have yelled at my kids and ignored them, I have taken bottles of Advil and have taken more pain killers than I am comfortable with.I have ignored friends and family's phone calls. I have laid on the couch, laid on the couch, laid on the couch.
I have watched hours of Law and Order or related programs. I have NOT touched my husband, kids, friends, dogs, or plants because it is so intensely painful. I have prayed and cursed like a sailor. I have read book after book. I have cried, yelled, screamed but not at anyone because there is no one to yell at. I have given up and started over. None of these things have made  the pain go away. I have taken enough steroids that my face has become cartoonishly large. I have been full of hate and rage. I then have turned around and chastised myself for being such a baby. I will not give in. I am not brave, just stubborn. I will not BOW to this!  I have tried so many ways to deal with the pain but that is not really the point. The point is that I keep trying to deal. The alternative is just too depressing. I am not the pain, I am not Lupus. And today I will go on.

The great thing about having a chronic illness is that one gets to meet so many health professionals. This week I get to meet a hematologist, doesn't that sound fun? He happens to be at a Cancer Center, my friendly new specialist, so I pointedly told the receptionist that I do not have cancer and she laughed. She also told me they were so looking forward to meeting me. I found that strange. I have been sick for over 20 years and not once has a medical receptionist has said she was looking forward to meeting me. I am comfortable in my role of being only one in the masses of sick people. Somehow standing out in the crowd of sickies makes me uncomfortable, like that would mean I was special in my sickness, which I would prefer not to be. If you did not know a Hematologist is a doctor who specializes in blood. I have been consistently anemic for years so it has never been a surprise to hear that my "levels were low". Apparently I have reached new heights of lowness and now this is "concerning". Most of what I dislike about seeing a new doc is the part where I have to go through my whole goddamned medical history, again. Often the doc has all my info in my ridiculously large file. Apparently the file is meaningless because my job is to reiterate what is there in fine print if said doc would only read it! That almost never happens. I hate telling my sickie story, it is boring, long meandering and reminds me how long I have put up with this bull shit. Acquiring a new specialist is not like acquiring a new Dooney and Bourke handbag, no status is achieved by gaining a new doc.

I am a lifelong quitter. I can give examples going back to childhood ie: ballet, gymnastics, soft ball( it is hard to play a sport that requires you to keep your eyes open as the ball is racing toward you). I can give examples of more recent join/then quit activities: volunteer at animal shelter, selling Mary Kay( it is hard to be a successful cosmetic salesperson when you just give away the make up to friends),took the training to volunter at a domestic violence shelter( too emotional for me), etc... I could go on BUT.... I have broken the Quitter Mold! I have been (gasp!) running a (very) small business selling my homemade jam! I think the whole thing is most shocking to myself. Change is hard, a subject I have broached in blog form before, yet here I am ;the non-quitter!
I have never gone to business school so one could say I am making this up as I go along. The crazy thing is that even on my worst days I still think I can do this! To say I am self deprecative is putting it mildly. Saying ANYTHING about myself is good has not been my norm. It is so bizarre to be hawking something of my own and saying, "this is really awesome!" Yet, I know it is. This change is definitely a good thing.
Lupus does not go away when one decides to take a trip, have a baby, move to another state or start your own business. Logically, I knew that going into this. I am still downing my breakfast of champions: Coffee and 15 prescription medications every morning. There is a reality check, indeed. No, Lupus has not picked up and moved on but it is so great to say to it, the actual diesease, "fuck you, I'll do what I want to!" Somehow that just makes me feel so much better!
It has always been hard to have an enemy that has no entity. The evil of Lupus (and probably others' who have chronic illness feel the same way) is that there is no "being", for lack of a better word, to be angry with. It leaves me frustrated and ending up angry with the only one who is there: ME. Doing my little jam thing and having my little successes gets me past the anger. I don't want to paint the wrong picture here, before starting the jam thing I had a full and busy life. I don't think I was in a constant state of self pity and anger. I fed my kids, talked to my husband, took dogs to vet appointments. The difference is now I have this one thing. This one thing is mine, and whether I never make a buck, or if this whole thing goes down in flames I can still say" I tried! " I will never be kicking myself wondering if I could have made a go at this. Nope, I definitely have this! For right now, I AM the jam maker extraordinaire.! At least that is what I am saying to myself. Yep, that feels great.

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.

!

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 !