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Posted By : okie - 4/16/2007 11:40 AM
I'm feeling kind of low right now. Tomorrow is the anniversary of my husbands death. Even though it's been 7 years I still have problems on the anniversaries. This one a little more than normal. I think partly because I moved to another state and things are so different and partly because other things are bothering me. My friend is here mowing my lawn. I'm so happy she's doing it but I look outside and think abot how I used to love to work in the yard. I love the smell of fresh cut grass and running around barefooted feeling how soft it is. I feel like life has become more of a spectator sport for me. The only thing I'm good at any more is going to the doctors office.
I'm not a good wife to anyone. My son lives 1000 miles away and my grandbabies live with their mom on the other side of the country. I hardly talk to them. I'm wondering what exactly is it I'm good for. I'm lucky if I can go out with riends or family members for more than an hour or two and than I have to leave. I was with a friend this morning and she was concerned I would run out of oxygen and needed to get me home. Even if I hadn't gotten low on o2 I would have gotten tired and needed to rest anyway. I'm 49 years old. I used to be able to do anything. I was one tough cookie. I had 4 brothers and you have to learn to be tough to survive that. I pray all the time that God will heal me or if not he will show me what he wants for my life. I just feel so empty right now. I just want to be like everybody else. Please don't feel like you have to reply. I just needed to put it in words. I'm know I'm feeling sorry for myself and I will get past this. I'm sure it's mostly because of this anniversary. My poor husband has been gone for 7 years and I still yelled at him today. For leaving me and for not having life insurance and not providing for me. It's pretty bad when I have to save up money to buy a pair of underware! These perscriptions are killing me. I'm living on 540.00 dollars a month and 120 dollars in food stamps. If my house wasn't paid off I would have lost it by now. Last month my brother sent me 200 dollars this month my parents sent me 100.00. This is not the way my life is supposed to be.
Hugs and God Bless

God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Posted By : creaky1 - 4/16/2007 12:41 PM

Hey Okie,

I posted some on your Opana thread over at Chronic Pain. I see your having a tough time. I wish I had some magic words for you that would make things better but I dont. I will say though that God has some sorta plan for us that we will never understand. Some folks I believe find out early in life and some may never find out. Some lead healthy productive lives and some of us dont. But we all are loved I believe by God and that he doea listen to our prayers its just that his will for us may not be what we want to hear. I have prayed my buns off to be free of back neck and nerve pain but it hasent happened and I too get real discouraged about it. But, we have to keep our thoughts on good things or the bad one will consume us to the end. Where ever you are, try to get out a little and meet some folks. I wish I had a friend that would come help me sometimes. I am married and my dear wife is becoming tired I think of my problems and lack of ability. I try to do as much of my own stuff as I can. I am starting to ramble but if you can perhaps try to contact those Grandkids or your children or an old friend or make some here. At 49 you have alot of experience to share. Its ok to feel down sometimes because we hurt and are broken. I hope we both find the solution or a path we havent traveled. open your windows and smell the grass! 

I sincerly hope I havent offended, Creaky1  cool

 1993, Fusion C5-C6 complications, trached; 1995, re-fused C5-C6; 1996, Left shoulder de-compress; 1999, Right shoulder de-compress; 2000, C5-C6-C7 fused  Ant. Post. with cable and clamp fixation; 2001, L4-L5 Lamenectomy; 2002, Left shoulder re-visited, C4-C5-C6-C7 Ant. Post. Fused with rods, screws and wires; 2003 L3-L4-L5 Ant. Post. w/rods and gnarly lookin screws. Still in pain but stable... so they say... ouchie
New News: L5-S1 collapsing but no surgical option. Spinal Cord Stimulator??? Doubtful...

Posted By : PattyLatty - 4/16/2007 12:57 PM
Carol, I'm sorry you're having such a rough time right now. Well, I mean a rougher time than usual. Do you find yourself just limping along until something happens, such as the anniversary of your husband's death, and then hit bottom once again? I would think that the anniversary of his death would be hard enough if you were healthy and out there conquering the world, but being sick makes it even harder to bear.

You talk about not knowing why you're here. When we thought we were facing my hubby's death, I realized that all that matters to me are the people in my life. While I miss my old life too, I believe that when I'm at the end of my life and take the time to look back, my best memories will be those that have other people in them. Perhaps you can't create a beautiful garden anymore, or have a successful career, but you can be a good friend. Your sweet, caring disposition is so important to this forum. You always have a kind and supportive word for those of us who are having a hard time and I know I would miss that if you weren't here. Sometimes we have to look for the little blessings in our lives in order to see our true value. I hope you can do that Carol.



Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Posted By : okie - 4/16/2007 1:01 PM
Hi creaky, of course you didn't offend me. thank you also for the info on the opana. I'm sorry you are in so much pain. I know it's hard on loved ones when we are hurting. But I think it's mostly because they love us so much it's hard to see us hurting. My sister in law told me yesterday that we really have to do somthing so I don't have to missed out on so mch stuff. I know she meant well but it hurt my feelings anyway. My brother is a minister and he gets his official license the 27th. He has worked so hard for it. However it's a 2 hour drive to get where they are having the program. and it's an all day event. I of course won't be able to go. I'm afraid that it will wear me out and I won't be able to get home.
Anyway thanks for your kindness. I'll pray for you that the Lord will remove this burden from you.
Thanks again
God Bless

God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Posted By : okie - 4/16/2007 1:13 PM
Thank you Patty(hugs) . I know you have been going through so much the past few months and it does make you appreciate what you have. I know I will feel better once this lousey anniversary is over with. I'm glad you think I contribute in some small part to this group. You people know more about what I feel and how I think than anyone else. You make it easy for me to want to be there for you. I get much more out of this family than I give. I did manage to go out oxygen hose and all and sweep off my back deck. it looks better but it needs a good hosing down. It hasn't been done since I've lived here. It's been full of junk until recently. I have lots of paint. I hope I can slowly do a little bit of painting to brighten things up. I guess like you say be happy for the little things.
I'll get past this. I just need to get it out of my system. Talk about it instead of holding it in. Realize that things could be much worse. Hey I'm still alive right?!
Thanks again hun, I hope the sun is shining down in your neck of the woods too.
Have a great day!

God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Posted By : dbab - 4/16/2007 2:34 PM
(((Carol)))... I don't know what to say, I am so sorry that you are going through this hard time. You are such a sweetie and I hate to see you in so much pain. Keeping you in my thoughts. <3

Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements

Posted By : okie - 4/16/2007 6:49 PM

((((((((DES))))))))))), I'm sorry hun, I just a  momentary jag of self pitty. I'm embarrassed I even said anything. I'm fine really I am. I am already on my way to being the goofy person I usually am. I have a lot to be thankful for. especially having friends that I can snivel to when I'm having a bad time. I'm just gonna blame my mood swings on my new medicine. That's my story and I'm sticking too it! LOL


love ya much

thank you


God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Posted By : hippimom2 - 4/16/2007 8:33 PM
((((Hugs)))) Carol. I read your response on my earlier post - thanks so much. Like everyone else here has said, you are a very sweet and kind person and have been so supportive to everyone here. I just kept nodding my head while I was reading your post about feeling like you have lost so much of your life and that you feel like a bystander instead of a participant - you basically said so much of what I have been feeling lately.

I imagine the anniversary of your husband's death has made everything you have been feeling that much more difficult. I can't imagine going through something like that, and then trying to battle your illnesses too. You have every right to have some moments of self pity.

I think I've finally realized that there are going be times when this disease gets me down and I'm going to feel like cr*p. How can it not get to you once in a while? I think the grief of all I've lost is one of the hardest things to deal with. Luckily we all have each other here and have wonderful built in support and understanding.

Please don't be embarrassed about your post - I think it's good that we can share these things with each other and help each other out. It helps you know that you are not alone in this and there are other hands reaching out to yours in the dark.

I'll say some prayers for you during this difficult time of year.

Love and hugs

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; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Posted By : emmi - 4/16/2007 8:45 PM
Hi Carol,

don't say sorry!!! You have nothing to be sorry about. You lost your hubby 7 years ago. You are allowed to mourn him and miss him. You lost the physical part of yourself that could do whatever you wanted to do whenever you wanted to do it. You are allowed to mourn that and miss that. (You are also allowed to hate it and feel sorry for yourself from time to time about it. We so understand it!!!) There is absolutely no need to apologize for not feeling well, for being so tired, for hurting, for knowing an event might be "too much"...we all understand.

We all wonder, too, what on earth our purpose is here on earth. For me, it's doing the best I can with what I've got every day trying to live the way we were taught in Sunday School! Some days I do better than others. To be honest, today was not one of my better days. I feel like crap and I acted worse. (I will have a long prayer tonight!) From where I sit, Carol, you could be a Sunday School teacher.

I'll be thinking of you and keeping you in my prayers. I know you'll be ok because that's just how we are. We get down, but somehow we always get back up because that's just what we're supposed to do. Plus it's just no fun down there!

xoxo emmie


SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted By : okie - 4/17/2007 4:47 AM
Hi hippi, thank you. I know I felt the same way when I read your post. All though it makes me sad that you are having these struggles it also made me realize that I am not alone. I feel much better since I got it off my chest.
You're right there will be good days and bad days. Hopfully with the warmer weather there will be more good days. I really hate the winter time! I went outside last night after the sun went down. It was still about 65 degrees. I just sat and looked at the stars. It felt so good. The stars were pretty. I think I might start a diary and write down all the good days I have. Maybe I'll start two. one for bad days and one for good days. I'll bet in the end my good days will outweigh the bad.
Thank you for all your love and kindness. I hope you have a wonderful day!

God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Posted By : okie - 4/17/2007 5:00 AM
Oh Emmi you are just so sweet! I'm sorry you aren't feeling well. I highly doubt that you acted that bad! Some how I just can't see that in you. LOL.
My precious nephew got put on alert for iraq this week. The first thing I felt like doing was to kick somthing. Than I realized that wasn't the most christian thing I could do. So I prayed instead.
It's funny you should say a Sunday school teacher. I didn't realize my christian background showed through that much.
Don't beat yourself up God understands. When we're sick it's not always easy to be nice. Somtimes the weight is very heavy.
I hope you feel better today. Please keep us informed. I will be keeping you in my prayers.

Thank you so much ((((((hugs))))))

God Bless
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
Come ye, all that are weary and heavy laden, and I will give you rest!

Posted By : mom46 - 4/17/2007 8:33 AM
    I'm sure this is a very hard time for you. I can't imagine what your going through. Please don't appologize for sharing your feelings with us. This must be very hard with your family so far away. Please know that we are here to lean on in your time of need. Your are in my thoughts and prayers.
                                                        Love ya, Babs

 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted By : cured4real? - 4/17/2007 5:50 PM
(((((Carol))))) I hope today is a blessed day for you. I'm so sorry for your loss and understand your loneliness and other feelings. I used to have a horse farm and worked a very exciting and stressful job, and some days its a struggle to make it from bed into the armchair. The local ministers and do gooders come by to try to drag me to church and chastise me for sitting in a chair, but everytime I go to church I end up sick with a cold and so I watch church on tv. I haven't seen my oldest son in years, he lives far away and my youngest is flying the coop and when he's gone with friends for weeks at a time, I fear that I will lose him too. For a while, I was alone and really sick and it was very difficult to find a reason to keep on. It sounds stupid, but I have a little chihuahua mutt who's really helped me alot. She's low maintenance and just keeps me company. It was cool what you said about going barefoot in the grass, I love doing that and I still go out barefoot when I feel well enough. I try to sit outside, even if it's at night looking at the stars. Just being outside can be good. I live in a very poor part of the us and that's how I manage. Alot of people here are in our same boat, so we are "middle class". I hope that you can go outside a little like you used to. I think that is important. I watch the birds at the feeder through my window but its not the same as going outside. Sometimes I go outside in my nightgown (so do my neighbors!) we live in the country. I've really gotten into watching the birds and got a guide and binoculars and watch them through my window at the feeder. As you can see, I don't have much of a life, I was a club hopper and traveller, very busy professional, but my health took me down a few pegs. I've started writing and found that is good, and painting, living a life of leisure, so to speak. I understand your anger, and your heartbreak, and sometimes I think we all wish we could just wake up to find this was all a dream and everything was back the way it should be, with the ones we love, that we have another chance. Who knows, maybe someday we will. Maybe that's what heaven is, waking up. Please know you are loved and you do have friends here and I know from my experience that there are always people here to talk to and who will listen and understand. I hope you can go outside and feel the ground beneath your feet. This is very iimportant to you, I think, as it is to me. I just don't feel right without that. My sister said its a spiritual thing that nurtures me. For me, that is how I feel in contact with God, how I feel in touch with my ancestors and myself. I hope you had a good day today, and if there are stars you can watch them even if you can't go out during the day, you can go out at night. I hope you have a nice, peaceful night and I hope all goes well and better and better for you and I hope you can go outside and enjoy your yard.


"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

Posted By : omega - 4/17/2007 8:29 PM
Do not feel sorry! It is very natural for a wife to mourn for her husband, even though it's been passed seven years. After all, he is your loved one. It's okay to be angry. You are a very very sweet woman and I do feel your sincere care.
Sometimes we don't quite understand why we all need to face those seem-to-be unending troubles/distresses. It is defintely quite difficult to face those, but I do know and believe that in the midst of our physical/emotional/spiritual pains, God is here for us and with us.
We are all here to support one another. Sometimes you provide support to others, and sometimes we provide support for you. This is one good thing about this forum (LOL).

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