Is this really my life?

I wrote this the other day, just getting around to posting it.

Yesterday I was sleepy the whole day but I didn't feel the lack of stamina sort of fatigue. I took it easy the whole day anyway, just to be safe. A bit before bedtime, the baby was climbing up on my chair and on me so I played with her bit (without even getting out of the chair) and it tired me out so much I thought I was going to pass out. Shortly after that I had to eat something so I could swallow my handful of pills that is my evening dose. I had to take them with sprite cuz I have been so nauseous this week. Standing there swallowing pills, still tired from doing nothing and in so much pain that I had limped to the kitchen, I thought "is this really my life?". Will it really always be like this?

just a small purge

i'd love to be able to say that peace has returned to my house, but it hasn't. sure, the wife and i had a heart to heart and things were good for a solid 48 hrs. since then, they have been good in spurts, but at the moment i'm so annoyed i've decided its best if i don't speak to her for a bit because i know i will start a fight. so we are in separate rooms, doing our own thing at the moment.

i'd also love to be able to say i'm feeling better, but the truth is i'm not. my 20 year class reunion was this past weekend and i wasn't well enough to go. it wasn't so much the reunion as being able to go back to my hometown that i wanted, but regardless, lupus wouldn't allow it. i knew this way in advance and didn't even bother buying a plane ticket. however, that sort of put the icing on the cake of this feeling that there is a whole life out there that i can't live anymore. a life full of socializing, laughter, sunshine, baseball games... it makes me sick to my stomach thinking of all the shit i've missed out on since this fucking disease took hold of my body.

the other thing that has been bothering me this week are some people who are not in my life as much as they used to be and every time i see posts on facebook from them, it pisses me off but i don't quite know why. i mean, i didn't expect their lives to stop because suddenly they don't see me every day. i certainly don't want them in my life now, so its not like i miss them. i guess i'm just angry that i was written off so easily. i never thought the faces they showed were really their true colors, but it still upsets me. this is leading to me not posting as much on facebook unless its something upbeat because i don't want them to know that i'm suffering. for some idiotic reason i want them to think i'm fine without them. i am most definitely not fine, but it has nothing to do with them not being in my life.

since i have no health insurance, i have to go to the community hospital which is rather far (not to mention tolls, parking and wait time). but, it is what i have to do if i intend to get health care, which i can't avoid. every time i think about it, i get angry about having lost my job all over again. at least i'm progressing from being angry about it all day every day. so this week i have one appointment for bloodwork, another next week and a followup visit shortly after that. it has been almost a month since my first visit to the clinic and i have yet to get my referral to the rheumatologist. i am not going on 5 months with no rheumy visit.

Somebody throw me a life preserver!

I feel like I am drowning. My head is swimming with a thousand suggestions from family and friends and I am sick to death of it. Everyone seems to have an explanation or suggestion for why I feel so horrible or what I could do to feel better.

There are those who constantly ask me how I am feeling, but that question always comes with such pressure to reassure them that everything is ok. Then there are those who never ask at all and go on like it isn't happening. Either they say I am doing too much or not getting out enough. One says I am not eating right, the other says I should add some new supplement to my diet that they heard is a wonder cure. I get lots of "you should exercise more." Either they tell me that I sleep too much or I am not getting enough rest. Or how about the insomnia I battle on occasion is in my head? Gotta love that one. There is also one who says my doctor doesn't know what he is doing because he hasn't been able to get my symptoms under control yet even though it is well known that it can take several years to accomplish that.

As fun as all that sounds, I have saved the best for last. I would like to present you with my all time favorites:

3. I feel so horrible because I don't think positive enough If I mention a new symptom that I notice or something that concerns me, I am bringing it on myself by focusing on it and being negative.

2. I don't have enough faith in my life. If I prayed more maybe things would be better. Or if I went to their church I would be miraculously cured.

1. While it is not my fault that I have lupus, it is my fault that my symptoms are as bad as they are. Apparently I make it worse by not eating right and not resting enough (because I have fallen asleep at my computer until 5 or 6 in the morning on more than one occasion). This blame then inhibits this particular person from showing me any emotional support because they are angry with me.

I realize that there may be grains of truth in some of those statements, but what I wish is that they would just stop with the suggestions, blame, avoidance and general nonsense and just take a moment to ask me what I want or how I feel about all of this. I would like more than anything to feel like I am not going through this alone emotionally. It would be great to have them talk to me instead of lecturing. And it would totally rock if someone would just hold me and let me cry on their shoulder when I feel that it is more than I handle.

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.