tag:blogger.com,1999:blog-25236128678831214732024-03-13T09:06:52.985-07:00Mommy's Broken: Life with LupusThis is my journey as a mother with lupus. Being a mommy is hard enough for any healthy women, but lupus adds a whole new set of challenges and struggles. This will be my space to talk about all the ups and downs of life.Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.comBlogger120125tag:blogger.com,1999:blog-2523612867883121473.post-91668998440021089412013-08-26T15:42:00.001-07:002013-08-26T15:42:21.342-07:00UpdateAgain I am sorry for the long long wait for an update. We have been moving and my computer went and we have no money for internet.... This list could go on forever but you get the idea. Now on to the updating.
We moved to Jasper AL. The place I am originally from and the place where Gwyn was living. Now Gwyn is in Birmingham (an hour away). I am so excited for her and her new school. I really Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com1tag:blogger.com,1999:blog-2523612867883121473.post-87311494269271922602012-06-30T19:52:00.000-07:002012-06-30T19:52:44.604-07:00I think I am becoming a cynical person. I keep getting annoyed with people who can't deal with their issues. People who over react to every little set back or change in their lives. Maybe it's easier for me since I am so young and have been sick for most of my grown up life.
I wanted to work. I wanted to have a nomal life. I wanted a life where I could have some money. I wanted something to Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com1tag:blogger.com,1999:blog-2523612867883121473.post-11522694992274384622012-06-20T16:46:00.001-07:002012-06-20T19:43:17.784-07:00One year later-
I was dx a year ago with PAH. I have made it a year. Been thru alot of meds.
It's nice to have made it a year but its scary to think one years is over.
This past year has been a rollercoaster ride. It still hasn't settled down. Still have lots of things towork out. I hope that I have lived more this past year then I have the last 27.
The goal is to have another year in Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com2tag:blogger.com,1999:blog-2523612867883121473.post-62928476344195249502012-06-10T21:03:00.000-07:002012-06-10T21:08:37.901-07:00I am sorry for the break. It actually wasn't due to health. The computer I am now working off is very broken. I have a 3 by 3 square to work with.
I saw my doctor friday and she thinks my chest pain might be from IBS. I will start a medicine for that monday, go have a ct, and start seeing a new doctor. Yippie. I understand you should treat the issue not the pain, and I am all for that but Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-19521574195932748092012-05-24T17:56:00.000-07:002012-05-24T17:56:53.908-07:00Spent a busy day with the girls. We went to the park/splash pad, then to my grandmother to do crafts for VBS. It was tons of fun. But man am I useless now. I sat in the shade the whole time I was at the park. Which is kinda not fun, I wanted to go run around in the water. It was nice to watch the girls play.
There was a nice moment with my grandpa today. I was at their house and he came in fromKarenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com1tag:blogger.com,1999:blog-2523612867883121473.post-27689394686650705782012-05-20T12:49:00.000-07:002012-05-20T12:49:45.577-07:00I want to thank everyone who reads this blog. You guys are wonderful. I have been getting lots of feed back and its very helpful. Its nice to know that people are enjoying this blog.
Happy news we got approved for section 8. Government help for housing. They give us the opportunity to find a place to live and then they help pay the rent. I am not above getting help. As far as SSDI I am not Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com1tag:blogger.com,1999:blog-2523612867883121473.post-27708294046894417132012-05-14T14:44:00.000-07:002012-05-14T15:14:40.707-07:00
We had a wonderful weekend. We spent Saturday morning at Art in the Park. A local arts and crafts show. They had everything. We looked at wind chimes made out of forks and spoons. I am now on the hunt for spoons, I am going to make my own wind chimes with just spoons. We also saw a women who made journals out of old books and jewelery out of the pages and with Scrabble letters, it was really Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com6tag:blogger.com,1999:blog-2523612867883121473.post-2784635334929007082012-05-11T13:08:00.002-07:002012-05-11T13:08:19.337-07:00UGH! I am so ready to just give up. Its always something. One we gave the housing authority our new number two days ago and they called our old number. Thankful that number was still active and that someone did text me and let me know they where trying to get a hold of us. Now they need a number that we gave them once and took us a trip to Millbrook to get, that they've lost. I don't Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-52923092210859525602012-05-07T16:44:00.001-07:002012-05-07T16:44:43.044-07:00We applied for section 8, which is government help with paying for a place to live. We already applied for public housing but they have no flats, and no apartments with bathrooms on the 1st floor. They really couldn't do anything else to help us. They said we should apply for section 8 and see if we could find a place without stairs on our own. They way it works is they give us an allowance for Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com1tag:blogger.com,1999:blog-2523612867883121473.post-29846391592626675432012-05-04T16:37:00.002-07:002012-05-04T16:37:58.318-07:00Still no place to live. Still no clue what we are going to do or should do. I can't imagine being away from Gwyn but I can't leave Rory homeless. It's not a choice, its not fair. It makes me crazy. It make me want to kick and scream. I want to go and yell at the people who get things given to them and still aren't happy about it. UGH. I get the concept of life's not fair, and I don't expect it toKarenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com2tag:blogger.com,1999:blog-2523612867883121473.post-22802825114432543822012-05-02T06:18:00.000-07:002012-05-02T06:18:18.010-07:00May is Lupus awareness month. We keep giving all these disease/disability/disorders months to which we should make extra effort to be aware of them but it doesn't seem to be working. Until I had Lupus I had no clue that May was awareness month. Now that I have it I guess I need to be helping spread the word. I need a cure as much as the next. More importantly my daughters need a cure. I also Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-27277541041275223362012-05-01T09:25:00.004-07:002012-05-01T09:25:42.919-07:00Help?Its been a long while. I've been trying to do some living. Now I am thinking I want to live and tell everyone about it while I still can.
Sometimes it takes awhile for bad news to sink in. Like hearing that you have Pulmonary Hypertension and your live expectancy is 3 to 5 years. Oh and now we are going to put you on some shitty drugs, that hurt like hell, and try to make you last a few more Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-22062881424301836162011-08-19T07:53:00.000-07:002011-08-19T08:17:08.213-07:00I hate my lawyer, I hate my judge. I know they don't know my personal situation but do they have to take forever. I don't see what the issue is now, before there might be some question but now it's kinda cut and dry. Arg.
So this weekend we are doing Red, White and Tuna as a fundraiser for Grandview Pine YMCA. I hope I have enough energy to make it thru. While sitting here my daughter is play "Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-18257869189519615262011-08-17T18:06:00.000-07:002011-08-17T18:16:11.765-07:00MCTDI talk about how much lupus sucks but I don't often get to talk about my Mixed Connective Tissue Disease. Today it hurts. Today I feel like I'm dying. my hips are killing me. They are throbbing. I can't keep my balance. I can't walk to the bathroom. I don't usually cry from pain. I didn't even stop cracking jokes when they where digging around in my arm. But this makes me cry. I hurts sooo badly.Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-65445913284210386082011-08-13T21:05:00.000-07:002011-08-13T21:23:56.375-07:0020GIf you are a chronically sick person you may have some idea what 20G means. I went to the ER on Thursday. They needed to get a 20G IV started so they could run a very important test to make sure I didn't have a blood clot in my lungs. They tried 13times to get on started. They even brought in a sonar machine to get look at deeper ones, which still didn't work. Ended up not being able to do the Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com2tag:blogger.com,1999:blog-2523612867883121473.post-49518695666019258152011-08-09T11:56:00.000-07:002011-08-09T12:19:09.821-07:00Things I Miss...I miss mornings. 6am... I miss early mornings. I use to be a morning person. I loved mornings. I MISS them. I never enjoyed midnight or late nights but mornings. Something about early mornings. There is an energy in the air, all the possibilities of a whole day ahead. I miss getting up, enjoying sitting outside and then taking a shower. Thinking about all the things I can get done that day. 6am Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-82332096803464740602011-08-03T09:44:00.000-07:002011-08-03T09:51:23.228-07:00Sometimes good things happen.I got a call yesterday. A friend of the family signed us up for a possible hardship scholarship thru a homeschool provider. We got the scholarship! It includes 150dollars in credit for their store and a 500dollar check to spend however we need to. I knew we were going to homeschool no matter what but this just makes life so much easier. It is wonderful to get good news in the middle of all this Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com1tag:blogger.com,1999:blog-2523612867883121473.post-69078550769482907822011-07-24T07:56:00.000-07:002011-07-24T08:16:04.107-07:00TodayI want to go to church. This is the second Sunday in a row that I have woken up to a totally broken body. My mind is wide awake, but the body is laying in bed unable to move. I miss the days when I could choose what I wanted to do.I also want juice. I bought some awesome juice a few days ago. I was really looking forward to it. I get a huge glass, I know I am going to enjoy the juice. NOPE... Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-83939984496357527492011-07-19T20:26:00.000-07:002011-07-19T20:57:28.270-07:00Life goes onWent to my cardiologist (who won't be my cardiologist after today.) This is the guy who told me in February that basically I was lazy. I was sent to him in Feb. due to my symptoms and he did a heart echo and then a stress test, according to him he didn't find anything wrong. Then by June I was in full blown PAH, like thru the roof pressures. So my rehumy asked me to go back to him. I agree, but Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-47871175828547103122011-07-17T21:18:00.000-07:002011-07-17T21:39:00.099-07:00I don't wanna!I cry. It seems like that's all I can do these days. It's pointless to cry. In fact its a waste of time. But I can't seem to help myself. I get assured that it is totally normal. In fact most people tell me they have no clue how I deal with it. They say that they'd take it much harder."How are you doing?""I'm dying, much sooner than later. How would you be?"I feel so cynical. Maybe it does make Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-71289825778850870092011-06-24T15:49:00.000-07:002011-06-24T16:14:22.910-07:00How quickly things changeI ended up in the hospital June 8th. My Rehumy had been trying to get a ct with dye, she finally sent me to the er to get it done. Well good thing she did. We didn't find any blood clots in my lungs, which at 1st sounded great. Now I would take blood clots over what they actually found out I have. Drum Roll...... I have Pulmonary Artery Hypertension. Another chronic, incurable, progressive, and Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-87790217121239218382011-06-05T16:36:00.001-07:002011-06-05T16:54:47.471-07:00The sermon at church today was spot on. It was about anger managment. I know I needed it, especially with my upcoming drs appointment. I am not happy with my dr right now, it feels like she doesn't care what I am going thru. It wouldn't upset me so badly if it wasn't affecting my life. I am working on a lot of things but I have to let David and my friends do things I would normally do.Watching a Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0tag:blogger.com,1999:blog-2523612867883121473.post-44919590828888940922011-06-04T07:27:00.000-07:002011-06-04T08:20:15.577-07:00I read a book that my pastor and a few other members of my church suggested. They said it was a good book and that I would get alot out of it. I swear this is the only 'warning' I got about the book. Now that I am done I believe everyone should read it! Talk about a life changing book. Erwin McManus' The Barbarian Way, my advice pick it up and read it. I am not going to give you a sneak peak, youKarenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com1tag:blogger.com,1999:blog-2523612867883121473.post-88064587347959690632011-04-22T11:41:00.000-07:002011-04-22T11:54:05.191-07:00UpdatesIt has been a long time since I have blogged. Life has been on fast forward for the past 6months. We have been homeless, taken in, found a theatre to be apart of, and starting going to church. My lupus has been really active and I have been put on tons of meds, but we still can't get it under control. My doctor is taking forever to figure out what is currently wrong with me. I have a major issue Karenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com1tag:blogger.com,1999:blog-2523612867883121473.post-12068027995890826692010-10-21T10:52:00.000-07:002010-10-21T11:04:30.311-07:00School DazeBoth of my daughters are in school this year. Rabbit started kindergarden and Pooh is in the second grade. They are only 13months apart in age. Pooh started school right after she turned 5. Her birthday is June 18th. My mother started me right after I turned 5 also (my bday is June 21st). Mother regreted this decision till I was in high school and finally caught up. To this day she tells me sheKarenhttp://www.blogger.com/profile/10706638782271751737noreply@blogger.com0