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.

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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.