Sometimes you just need to cry

This entry marks the start of a new direction for my blog: my life with lupus. I was diagnosed with Systemic Lupus in May 2009 and while I may have blogged about it some, I have avoided talking too much about the disease, treatments or my feelings about any of it. I have posted once or twice saying that I was going to, but I just reread those and I still played it close to the vest. I avoided it because I always thought that topics like that were too much of a downer to blog about given the kinds of entries I used to post. That then led to me just not blogging at all because the truth is that this disease has encompassed every aspect of my life and changed me in more ways than I was prepared for. The wanton lesbian who often gushed about her wifey and blogged about bringing sexy back has left the building (although I am begging her to return) and in her place is a very tired lesbian who is in constant pain, and fighting to get a handle in the whole situation. But the disease and it's treatment (not to mention the side effects of said treatment) are slippery sons of bitches and that handle on the situation is one elusive mother fucker. I hear people say "I have lupus, lupus doesn't have me." I want very much to feel that, but the truth is I feel that lupus does have me. By the balls even. (figuratively speaking, of course) I know that I have a tendency to gloss over things and answer with a smile so as not to look like a complainer or worry other people. So often my answer to the standard "how are you feeling" question is "fine" when I am not, so blogging about my life with lupus means getting more real and honest than I have been about all of this before, but not only do I need the outlet, I miss blogging. So after much thought I have decided that its my party and I'll cry if I want to. This is, after all, my blog and these are the things going on in my life at present. I don't plan to hold anything back or mince words. You have been warned.

So, as I was saying, sometimes you just need to cry. And that is exactly what I have done several times in the last few days. I cried out of frustration, anger, pain, resentment. I cried for the state of my health, my financial situation, my relationship... I cried because I don't want to be sick anymore, I don't want to pop a handful of pills twice a day anymore, I want my relationship with wifey to go back to being easy, and I want to not be so broke that I don't have enough money to go to the doctor or buy my meds.

I have heard that crying is supposed to be cathartic, but I honestly don't feel any better. Even now, I feel the tears there, just below the surface. Like if I were pushed just a little harder, I would burst into tears again. Maybe I didn't cry enough to make the tears to issues ratio tip the other way. The problem (for me) with bursting into tears is that I don't like to cry in front of people. You know, that whole "never let them see you sweat" mentality. In all the years I have been living with wifey and the kiddos (9 years), I don't think the kids have ever seen me cry even once. So not only do I have enough issues to bring me to tears, I have issues with the tears too.

My symptoms started in November 2009 and since then it has been an uphill battle. No matter what meds they put me on, my symptoms are not under control. When I got diagnosed, I had no symptoms and I thought I would stay like that for awhile. It took me awhile to process that I have this chronic disease, but I felt like I could handle it. 6 months later, the symptoms started with a vengeance. This was a new reality and I had to wrap my head around the diagnosis all over again. But I did and I thought I could handle it. When I started the meds I thought ok, I take these pills and I will get back to the old me. As it turns out... Not so much.

For 2 fucking years it has been a fight to even get out of bed most days, not to mention trying to hold down a job. I used all my vacation and sick time way before the year was up and ended up having to have my pay docked after that because I could not manage a 40 hour week. I even had to take naps in my car on my lunch break just to make it through the hours I did manage to work. You may notice that I am referring to my job in the past tense. That is because, on top of the health issues, I found myself without a job in April. No job equals no income and also equals no insurance. I applied for Medicaid but got denied because I am not over 65 or don't have a child. I applied for food stamps but got denied because, apparently I get too much money from unemployment. Mind you, unemployment is only half of what I used to make and my medication costs are now 100% out of pocket. But that doesn't matter to any of these agencies. I then applied for disability and also got denied. The disability doctor's report said I didn't look depressed. He must not have looked hard enough. Of course it appears not to matter that I have not been able to work a full time schedule in two years. Nor does it seem to matter that I have lupus AND fibromyalgia and am on 11 different medications (one of which I inject myself with in the stomach) plus other required supplements. I am, of course, appealing the decision and have hired a disability lawyer.

As if there were not enough going on, the stress us really taking a toll on the wife and I. I miss the days where we could lay in bed talking at the end of a hard day. Hell, I miss the days where we could at least be nice to each other. So many days we can't even manage that for a whole 24 hours. One of us inevitably snaps at the other and it is ON. The bottom line is that she is my wife and I adore her. I cannot imagine myself without her, but I worry that we won't survive this.

Through all of this I have learned a very important thing about myself. I base my worth on what I can provide for you. No sense trying to tell me that is bullshit because I know it is and somehow (even though I realize it is totally off base), I have not been able to move past it. I know this because I am at the point where I can no longer physically provide anything for anyone. I am actually usually asking for help from my family rather than doing for them, which has left me feeling pretty shitty. Even so, I used to have my job to fall back on. I used to think "I may not be able to help around the house but at least I bring money in." Well, that is gone now too. Can you see where this is going? My self worth is out the fucking window. Wifey has so much on her plate being her parents' caregiver and picking up my slack and now she has me to worry about too. She says I am not taking care of myself. She says I don't rest enough, I don't eat right, etc. She shouldn't have to think of those things. Yes I know she does because she loves me, but I still feel guilty. She also thinks that my not eating right and not resting enough is making my symptoms worse, so that creates a whole other complication for our already drowning relationship.

People have told me to stay positive and all I have to say is walk a mile in my shoes and see how positive you are after even 24 hours. I've also been told that accepting my situation may help me deal better. While that may be true, I'd like to see them in my position and see if it is just such an easy siutation to accept. Those words of advice roll of the tongue quite easily, but the reality of this isn't nearly as easy.