Down and Disconnected
Sorry I haven't written in a while. I had to do some traveling for a family event which was as dysfunctional a trip as ever. It seems whenever I visit, I fight with my family and vow never to return. For some strange reason, whenever I am visiting them, they are consumed with other things and offer me no support with the kids. My husband started a business from home about a year ago because I couldn't handle the kids on my own day after day and I have grown to rely on him so much. So when visiting them with no husband, sleeping in the same room with both of my sons, and with a 21 month old in a non-baby proof house with medicines, knives, etc in drawers he can reach plus 2 staircases completely open and fancy china and other collectibles, keepsakes on bottom shelves, I spent all of my days standing up, walking around behind him so he wouldn't get injured or break anything. I had them 24 hours a day with no relief. At home, my house is baby proof so if I am having a really bad day, I can lock all the bathroom and bedroom doors and he can play anywhere with no issue while I rest on the couch. By the time I got home, I was so depressed. I am not happy at home because the weather is getting warmer and soon it will be too hot for me to go outside anymore. That is so depressing to me when I have to hibernate. But, I am not happy in the state where I grew up and my parents still live, either. I am just not happy anywhere and that thought is getting me more depressed. Whenever I am depressed, I isolate, hence, no posts. I feel like talking about it just makes other people down and I don't want to do that. And I am feeling sorry for myself which I despise because so many people are suffering much more than I am and I always feel I need to be grateful and not wallow in self pity. I just hate how isolating this disease is. I was talking to my primary care physician, or PCP, this week and he said I am severely depressed even on my anti-depressant. I told him how alienating it is to not be able to go into the sun, take my kids to the playground, in the pool, etc for about 8 or 9 months every year. His response was what if I was paralyzed from a car accident and couldn't go swimming, would you feel guilty? I couldn't think of an appropriate response but soon after I thought of one. The difference is the person in the wheelchair looks handicap and I do not. So people will forget and invite me to the beach or to a outdoor play date and I have to decline and explain that I am basically allergic to the sun. It is difficult living in Florida with so many sun worshipers celebrating the warm weather while I hate it.
Then I had a friend today ask me how long I would get social security and I explained I will be reviewed in 3 years. I just felt like I had to defend myself but I fought the urge to do so. I don't have to justify myself to anyone. I am in CONSTANT pain from the moment I wake up until I go to bed and I am still awoken through the night by excrucating pain. In the morning, the pain wakes me up anywhere from 4 am to 7 am. But I try not to complain too much and focus on the good things in my life. It might have been my sensitivity, but I felt like saying, do you know Rob has to forego a paying, steady job with insurance, 401k, etc. to help me because I can't even manage my kids day to day. The pain makes me emotional, sad, and too often angry. I can't even fathom having a job. With my old one, I was so stressed, overworked, and I got almost every cold that I was exposed to because my immune system was so weak. I don't know what I would do if I had to work, on a good day I get out of bed to get a pill and then can go back to sleep. On a bad day,which right now is most days, I wake up and stay up whether it is 4 am or 7 am because the pain is too great. The conversation just stressed me out because I make a conscious effort to not talk about my health all the time so I am not a broken record, self absorbed and besides it doesn't do any good most of the time. For people that don't understand lupus, I cannot help them other than through this blog. My memory is so poor now and whenever I talk about my constant pain, I cry. And I don't like to cry around anyone. I usually isolate when I am emotional or depressed. I am not comfortable exposing myself when I am so vulnerable. Hence, no posts this week! But I continue trying to get better at posting so hopefully I will be posting more frequently. See, I can't even handle posting on this blog consistently, what would I ever do if I had a full time job again? There is no way at this point in my life I could handle any type of work. With my sensitivity to the sun / uv / fluorescent lighting, my overwhelming fatigue, my muscle aches, my herniated disks in my neck and now probably back, malaise, depression and zero tolerance for stress, I can't imagine having to work anywhere without my health declining even further.
If anyone is on an anti-depressant that works wonders, please comment with the medicine name. It is time I switch anti-depressants I think and try to find a good one to assist me through the depressing summertime.
Sorry for the ranting and complaining post but it does help to get it out of my head and on paper.
Oh, also thanks to all of you who became fans of mine on Facebook. If you haven't become a fan, please lend your support and click here for my page or just search Lupus Celebrity once you sign on Facebook.
xoxo
Lupus Celebrity
Then I had a friend today ask me how long I would get social security and I explained I will be reviewed in 3 years. I just felt like I had to defend myself but I fought the urge to do so. I don't have to justify myself to anyone. I am in CONSTANT pain from the moment I wake up until I go to bed and I am still awoken through the night by excrucating pain. In the morning, the pain wakes me up anywhere from 4 am to 7 am. But I try not to complain too much and focus on the good things in my life. It might have been my sensitivity, but I felt like saying, do you know Rob has to forego a paying, steady job with insurance, 401k, etc. to help me because I can't even manage my kids day to day. The pain makes me emotional, sad, and too often angry. I can't even fathom having a job. With my old one, I was so stressed, overworked, and I got almost every cold that I was exposed to because my immune system was so weak. I don't know what I would do if I had to work, on a good day I get out of bed to get a pill and then can go back to sleep. On a bad day,which right now is most days, I wake up and stay up whether it is 4 am or 7 am because the pain is too great. The conversation just stressed me out because I make a conscious effort to not talk about my health all the time so I am not a broken record, self absorbed and besides it doesn't do any good most of the time. For people that don't understand lupus, I cannot help them other than through this blog. My memory is so poor now and whenever I talk about my constant pain, I cry. And I don't like to cry around anyone. I usually isolate when I am emotional or depressed. I am not comfortable exposing myself when I am so vulnerable. Hence, no posts this week! But I continue trying to get better at posting so hopefully I will be posting more frequently. See, I can't even handle posting on this blog consistently, what would I ever do if I had a full time job again? There is no way at this point in my life I could handle any type of work. With my sensitivity to the sun / uv / fluorescent lighting, my overwhelming fatigue, my muscle aches, my herniated disks in my neck and now probably back, malaise, depression and zero tolerance for stress, I can't imagine having to work anywhere without my health declining even further.
If anyone is on an anti-depressant that works wonders, please comment with the medicine name. It is time I switch anti-depressants I think and try to find a good one to assist me through the depressing summertime.
Sorry for the ranting and complaining post but it does help to get it out of my head and on paper.
Oh, also thanks to all of you who became fans of mine on Facebook. If you haven't become a fan, please lend your support and click here for my page or just search Lupus Celebrity once you sign on Facebook.
xoxo
Lupus Celebrity
Posted by lupuscelebrity at 4/26/2010 1:23 AM 
Categories: depression
Tags: lupus sle depression anti depressant lupus celebrity facebook social security disability lupus
Categories: depression
Tags: lupus sle depression anti depressant lupus celebrity facebook social security disability lupus
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