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.

!