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Regular Member

Date Joined Mar 2007
Total Posts : 153
   Posted 9/15/2007 5:02 PM (GMT -6)   
You all know how I have been batteling Lupus and C. Diff, plus the horrible migraines and I have had a really rough couple of months.
I have been going through some new treatments for the c. diff that seem to be working. I started feeling better, and then WAY overdid it on Thursday. I was up and about and gone helping my sister and to the thrift store and grocery store and wal mart etc.
On Friday I woke up feeling like a pale pile of goo, had a slight temp and ached horribly.
Today the aches are a bit better but I am weak as a kitten, can't hardly keep my head up. When I woke up my hubby asked how I was feeling. I said "better than yesterday" because ....well I was, I didnt hurt as bad and even a little let up from the heavy aches is a good thing.
I had to go to wal mart and get some  more things for my c. diff treatments, and I really needed a shower. So I took one, mistake number one...I almost didnt make it through I was so weak and shaky and washing my hair while in a flare is a no no.
Soooo I still push it, because I want to be ALIVE and YOUNG and HAPPY and have a fun Saturday with my family.
It started going bad in Wal Mart parking lot when I asked my husband if he could park close to the building. He parked about half way there and I said "Theres no way I am going to make it that far" (not snotty, just statement)
And he gets ticked off and mumbles something about me saying I felt better today.
It broke my heart.
Why does the lack of understanding continually break my heart? You would think I would be used to it. My husband is ok most of the time, but he is not the nurturing sort.
I hate saying that I feel like crap all the time, so when I say I am doing better....people think I can climb mountains.
I am really probably not making any sense. On the one hand everyone gets sick of hearing that I feel like crud, and on the other if I say I feel good they expect WAY too much out of me. AND they have no understanding that just walking through the parking lot is WAY too much.
I CRAVE to be shown tenderness for what I am going through. Does that make any sense? Not that I want to be treated like a fragile egg, but darn it, sometimes I am a fragile egg and having my husband do little things for me that would make my life SO much easier and would be SO easy for him would mean the world.
Just helping me out of the truck that is so high off the ground, and holding the door open for me. Waiting for me and giving me an arm. Asking if he could get me something to eat or drink. Cleaning the flipping bathroom.
Please know that i love my husband deeply, but sometimes!!!
Ok.. rant over.
Love you all and thanks for listening.

Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 9/15/2007 7:43 PM (GMT -6)   
I hope that you are doing a little better tonight.

I know what you mean. I watch children all day long even on bad days. Thursday night I went to hospital for bad flare and left a mess of toys in the livingroom floor was hoping b/f would pick them up, nope I had to next morning before children started arriving.

Here's lots of ((((HUGS))) for you from me.


Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/15/2007 10:04 PM (GMT -6)   
Hugs for you both . . . I cornered the market and took the last "nice guy". . . so sorry your guys don't "get it" yet. They really could learn though.

Meanwhile . . . I'm sending you each some nice hot tea.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139


Co-Moderator - Lupus Forum


UCTD, Hashimotos, Inflammatory Bowel, Inflammatroy Arthritis


Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Regular Member

Date Joined Jul 2007
Total Posts : 261
   Posted 9/15/2007 10:26 PM (GMT -6)   
Hi, Darlene. I'm really sorry you're feeling bad. I wish we all had what I like to refer to as a "lightning finger". Then when situations happen like what you described in the parking lot today, instead of wasting your time explaining something they won't understand anyway; you could just give them a little "zap" with your "lightning finger". No permanent damage, just a quick sample of the exact way you're feeling at the time. When they looked over at you feeling crappy too, you'd just reply "See what I mean" and they'd get it! Taah! Daah! Anyway, I have several inventions (only in my mind, unfortunately) that would cure some of the major problems we all deal with. I guess my mind gets so frustrated some times with all the crap from this disease, the docs, other people, life in general, you get the idea; that it just tries to imagine a solution. I've previously posted the same general idea for helping docs understand symptoms we're trying to explain as well. Take care and just remember you do have a great place to come and talk with people who do understand. I hope you get to feeling a lot better soon!
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 9/16/2007 8:25 AM (GMT -6)   
(((((Hugs))))) Darlene. I think you described so well what so many of us go through and how much people don't understand this disease. I can just feel the people around me waiting to hear me say that I am feeling better and when they hear I'm having a good day I think that they think I feel healthy just like they do. Little do they know that my good day would have them heading to bed for the day wondering why they felt so miserable. I do the same thing you do when there is any improvement - I tell people I feel better than I felt the day before which they then think I am feeling better. I'm also like you in that I hate telling people how cruddy I feel everyday. I get sick of thinking it myself, so I imagine that others get tired of hearing it.

I like Sharen's idea of a little magic zap to let those around us feel what we feel even just for a few minutes. I can tell you love your husband and I am really hoping that he starts to get the big picture of this disease and how quickly things can go from you feeling kind of functional to you feeling awful. There is no way to predict how you will feel. Hopefully he will eventually start to get it and realize that you have no control over this illness and what it is doing to you and that you hate what this illness does to you just as much (if not more) than he does.

On a positive note, I'm glad to hear that the treatment you are getting for you c-diff is starting to work. Hang in there and take care.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 9/16/2007 8:32 AM (GMT -6)   
(((((HUGS))))))))) I agree so much. Sometimes when we say we feel better, people expect us to be normal as they, but for us, nooooop. A little trick for me is to say seems a little better, but still hurt. In this way, people will know we are still in pain.
HOpe you feel better soon!

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 9/16/2007 11:49 AM (GMT -6)   

My heart goes out to you and I hope that someday your hubby finally gets it. In the meantime, when you are going to the store, simply tell him to drop you off at the door and you'll wait for him. There is usually a bench at Walmart where you can sit and rest. Then tell him you're going to wait for him there till he picks you up. If he gripes at you, tell him you understand how he feels, however you want to be dropped off and picked up. It probably will do no good to argue with him, but I hope you can stand your ground.

It often takes a long time to finally get through to our partners and I hope others can help you with ideas.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Mar 2007
Total Posts : 153
   Posted 9/16/2007 1:10 PM (GMT -6)   
Thank you all for your support.
Its so great to be able to come here!
I LOVE the zapping idea. Oh how I love it lol. What a grand idea! I am going to go around pointing my finger and saying zap out loud, until my husband asks what the heck I am doing, then I will explain hehe. This could be a really good thing!
I know its hard on my husband.
I took care of our terminally ill daughter for 14 months until she passed away in my arms. Day and night I was on call, it was me giving her gavage feedings, taking temps, giving meds, consoling, soothing, rocking and changing.  Calling 911 when she had seizures, although he did go to the hospital with us.  Me warding off infection and doing load upon load of laundry, me setting the apnea monitors and me getting up when they went off. it was taxing, exhausting, and painful. I know how hard it is to always have to think about the other persons health when you are making decisions that would seem to only include you! Even as I write this I realize I was the caregiver, that he (my husband) had almost nothing to do with her. I really think it is a block of some sort with him. Not being a part of the care allows him to be blind to what is happening and therefore save him personal pain? I think he is afraid.
Maybe, cause I know he isn't a monster, he is actually a really good guy.
And that is where this family of Lupies comes in. :-)
Listening, offering advice, acknowledging, praying for and hugging gently.
Now this is a biblical excerpt, but those who don't believe in the bible can look at it as just a story? The story of Ruth and Naomi. Naomie being bitter and sad after having her husbands and sons die and being left without even a home. God sent Ruth into her life...grace in the time of trial.
This Lupus board is my Ruth.
Love and Hugs,
Chronic Fatigue 1990 * Migraines 1990 * Restless Legs 1995 * Fibromyalgia 2001 * UCTD/probable Lupus 2007* Clostridium Difficile 3/07

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/16/2007 3:16 PM (GMT -6)   
Oh Darlene . . . I'm teary.

You hit the nail on the head with . . . what he doesn't acknowledge, he doesn't have to accept. Guys really are like that.

Likely . . . if you do like Patti said, it will be a good thing because it is something he can do to help. My hubby always drops me at the door even when I protest, but he knows it is something he can do to help. He has become more and more caring and concerned over the years . . . I hope the same for you. I do look for ways to fill his needs too whenever I can . . . that goes a long, long way with most guys.

I like your reference to Ruth . . . it was a perfect story for this topic!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139


Co-Moderator - Lupus Forum


UCTD, Hashimotos, Inflammatory Bowel, Inflammatroy Arthritis


Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

New Member

Date Joined Sep 2007
Total Posts : 10
   Posted 9/17/2007 8:07 AM (GMT -6)   

your post really touched my heart. I can really understand exactly what you are going thru. I have 3 kids and they are always wanting to go here and there and everywhere...and they dont get it when i say I just cant right now. Saturday my daughters friend came over and wanted to go swimming. I was laying down in the bedroom. I heard my daughter say "we cant swim right now my mom has a migrain". and my daughters friend replied "oh she's sick again....your mom is always sick." and my daughter just said "I know". I laid in my bed and cried...cuz they are right. All I want to do is feel good.

I would give anything for the magic zapper!! lol Just so people could see that we REALLY are feeling like poo!

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 9/17/2007 2:50 PM (GMT -6)   

I think your husband has a twin, and he's married to me LOL. I feel the EXACT same way you do. My husband is not the nurturing type and he doesn't open the door for me, and I know its the way he was brought up. I knew it before I married him and before I got sick but it still hurts at times that he is not as compassionate as I NEED him to be. He avoids my sickness when he can. I do blame myself though because I never eased him into it. I was well one day and very sick the next, I never told him how bad I felt until it was validated by my doctors (took a few years) so basically he never took my illness seriously.

I feel for you and I wanted you to know that you are not alone. I do know what you feel. We know our husbands love us very much but showing it is hard for them. My husband is still on the road of denial, and I'm just waiting for him to make a turn. (((HUGS))) to you.
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 9/17/2007 7:29 PM (GMT -6)   
I know what you mean totally. And sometimes my bf and my son can both be real pains, or just don't get it. They are sick of me being sick and so am I. My bf can be so distant at times, tired because he does physical work, and I'm home so much I don't feel I know what is going on in his life that much. But then he does really neat stuff, like cooking dinner and always cutting my meat up for me in little pieces because he knows I have trouble swallowing and with my liver I don't need GERD. Its little things like this he does that are so sweet and while sometimes I feel like he just could care less if I were there or not, he does something to remind me that I do matter to him, however small. We are poor so he can't afford to buy expensive things and sometimes that's hard on a man, but he finds little ways to stay close, he's not the warm and cuddly type, and real rough around the edges, but he's there every night, takes care of things, and will take the time to show me a snake in the yard, or a neat plant or deer tracks or whatever and to talk to me about his day. Alot of people think he's just a real pain, but they don't see what I see at home. He took a long time to realize I was really sick. Bringing him to the doctors and leaving out some pamphlets where they would get read helped me to educate him to what we were looking at in terms of illness. I hope that everything is fine with you and your hubby and that maybe he just isn't sure what to do. Mine says that now and then and I just tell him the things he can do if he wants to help. Also, mine doesn't want to talk about it because he doesn't want to think I won't be around and gets very angry at times about it. So I just find another outlet when things get really bad until he's in the kind of mood where I can talk to him and he has time to prepare. God bless you and your family, and thanks for your kind words for the people here you are so right.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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