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.