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lupus, adjusting and can't do it alone anymore

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Old 04-22-2010, 10:18 AM   #1
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katytxmom HB User
lupus, adjusting and can't do it alone anymore

hi, everyone have been reading posts since i was diag. SLE and Sjogren's last feb 09, but have never posted anything.

i have always been they type of person to never ask for help, but am finding that as symptoms progress, i need help (that was hard to post) getting used to this new normal.

i am beginning to feel like such a burden to my family, especially my husband. i get soooo tired at such random times, ex. when we are out together or spending time with our daughters when they come home from college on the weekends, etc. I feel so bad when we have to call things short because "mom is tired again"

please don't get me wrong, my sweet hubby has been amazing, always taking care of me or making sure that i am alright. i have been blessed that i don't have to work outside of the house, but there are days i can't even do my chores in and around the house.

i used to be able to do it all, now there are days when i am lucky to get a load of laundry done and just straighten out the house or vacuum.

how was your adjustment period through all of this. i guess it must be like a mourning period, where you have to go through all the emotions until you get to acceptance... acceptance that on days i am very confused, tired, sleep for 2 hours at a time during the day because i can't sleep at night, have random stabbing joint pain, have silent migraines (no pain) just pressures and symptoms of transischemic stroke that last for about an hour or so and off and on for a week of so. i could go on, but it looks like i already have, sorry. i know that i am not the only one who is going through this. Any and all advice/support would be greatly appreciated

wife and mom of 3 girls, 2 goldens,4 inside kitties and 2 outside kitties

would love to hear from you
thank you all and big hugs :0)

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Old 04-22-2010, 11:55 PM   #2
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goldyfm HB Usergoldyfm HB Usergoldyfm HB User
Re: lupus, adjusting and can't do it alone anymore

Thank goodness the only one I am responsible for is me. I can't imagine having children or a spouse to cook, clean and launder for. It is about all I can do to keep up with myself. I know that before I had to leave my job, I hired someone to come in and clean every two weeks which was a big help, but now that I am disabled, I have relaxed my standards of cleanliness when it comes to my humble abode. I have simplified by doing away with the knick knacks to dust and extras that used to just sit around and collect dust. I know that it would literally be impossible to maintain the normal household tasks that I performed while my family was intact at home. I know how hard it must be on you. I can identify with the having to cut visits short, but at least you made an effort. I rarely get out for anything other than necessities. I pace myself when I do have to get out. I also let things go til I feel like doing them. I rarely have company and if I do, they know of my health issues and if they can't overlook a little dust, then I rather not have them over. If you have not had your sleep issues evaluated, I would pursue that symptom. I know that I sleep much better with a CPAP for sleep apnea than I had slept in years. I know that rest is extremely important when you have health issues.

Old 04-23-2010, 01:07 AM   #3
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islandjohnny HB User
Re: lupus, adjusting and can't do it alone anymore

Katy.......sorry to hear about your symptoms and know you have many others who also feel as you do. One of the greatest things about Healthboards, is that you find solace in sharing with so many others.

I too went from a strong healthy individual, to being 60% disabled. There really wasn't much I couldn't do in the way of repairing any household problem. I was also doing well with a business that I started. All that is in the past, but there days when you just can't help but to ask, why me?

The more you actually look around you, the more you'll notice that you are far from being alone in feeling the way you do. I keep as active as I can, even though every waking hour is a struggle. Your family truly loves you and they do understand. Don't feel as though you are anything less then the mom and wife they adore. I encourage you to keep positive thoughts, and try to walk away from feeling discouraged.

Although it's not always an easy mind set but I wish for you to be strong and come to where I say:
I no longer feel discouraged for the things that I use to do, I am however, truly GRATEFUL for the things that I STILL can do.

Blessings always..........

Last edited by islandjohnny; 04-23-2010 at 01:09 AM.

Old 04-23-2010, 06:49 PM   #4
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Re: lupus, adjusting and can't do it alone anymore

Katy, welcome, glad you posted! First off, I'm so sorry you're struggling, and I sympathize. What meds are you on? Do you avoid sun? I ask because you said you were Dx'ed with both lupus and Sjogrens, so I am wondering if you tested positive for anti-Ro. I did and was told sun avoidance could be especially important for the anti-Ro subgroup.

Honestly? Even doing all I was told to do for ten years, I STILL have days that I'm pooped, need a nap, and am NASTY for my husband to be around. Spring is my worst time of year, but I think that's common in lupus. Meaning, I SUSPECT you're not alone, and I KNOW you shouldn't feel guilty.

But the MAIN THING is "acute" vs. "sub-acute". However much you hate having lows, IF your major organs are functioning, that IS something to be very grateful for. But I know that isn't an answer...

I hope your 3 girls are well. I also love dogs & cats, so pats to them, too. But most of all, I send my best wishes to you. I hope you keep posting. Warm wishes, hang tough, Vee

Old 04-27-2010, 10:13 AM   #5
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katytxmom HB User
Re: lupus, adjusting and can't do it alone anymore

thank you for your responses. :0) sorry i haven't posted sooner, my 4 inside kitties all got sick at the same time with upper respiratory infections. i do have a question though... yes i am positive for anti-ro and have always wondered how the sun affects your body when you have sjogrens. i know that it can cause rashes, but is it that our bodies can't break down UV rays; and if it can't, does it effect your other organs because these rays become so toxic our bodies can't get rid of effeciently. i just don't know. again thank you for your reponses and sorry of the delay in getting back. since i am new to this posting thing should i start a new post with this question?

Old 04-28-2010, 04:57 AM   #6
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Re: lupus, adjusting and can't do it alone anymore

Katy, a normal immune system manufactures antibodies to direct against foreign invaders, like germs, bacteria, viruses, etc.. This is good.

Lupus, Sjogren's and close cousins involve over-reactive and aberrant immune responses. In these conditions, the immune defense system mistakenly creates "autoantibodies" that attack our own cellular matter. NOT GOOD. UV rays can produce rashes, but even worse, trigger *overall* systemic flares. For whatever reason, people positive for anti-Ro are thought to be particularly photosensitive. I hope is what you were afer, take good care, Vee

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