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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/4/2010 8:43 PM (GMT -7)   
I read a few of the posts people addressed to me and I want to say thank you. I think this is about as bad as I guess this disease has pursued me so far. I have had insomnia for over a week. So many years I spent wasting away my body. What I wouldn't give to have all those times over again. My body is so tired. I have nothing left to fight with. I can't even find a reason worth fighting for. I've prayed and begged for releif and gotten none. Where has my faith gone? Where is my hope?
Right now I don't even feel in control of my own mind and emotions. I wish I could put into words just how hopeless I am feeling right now. I don't beleive that very many people that are suffering can honestly say they don't feel like they have been robbed from one extent to another.
carol


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
 
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis.
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 

Post Edited (okie) : 6/8/2010 5:59:48 AM (GMT-6)


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 6/4/2010 8:58 PM (GMT -7)   
(((((HUGS))))) Carol, Please hang in there. This will pass. Know that we are all thinking of you.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/5/2010 7:38 AM (GMT -7)   
Carol, I am praying for you hun! I hope you can get some of the much needed rest you need. Has the sleeping pills helped at all? If not, maybe you can try another kind? Love you carol!

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/5/2010 4:08 PM (GMT -7)   
Carol, you are truly an inspiration to all of us. Please don't give up, maybe it is time to consider an assisted living facility where someone will take care of you on your bad days. I know you like being on your own but you need more help than you are getting. If I didn't have my husband I would be in one of those places because I can't take care of myself well enough to be on my own. I really hope you get some sleep soon. Also I would like to suggest therapy to help you deal with the issues this horrid disease causes. I know it helps. I really wish I could come to where you are and help out for a few days but I am just not able to do that.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/5/2010 7:05 PM (GMT -7)   
Dear Sweet Carol, please know how dearly we all love love and treasure your words. You inspire us, you give us courage, don't give up. I am sending you love and hugs and prayers.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/5/2010 7:11 PM (GMT -7)   
Thanks ladies, I appreciate your thoughts and prayers. I did get a little bit of sleep but still pretty out of it. I have slightly thought about assisted living homes. I know I couldn't live in a nursing home. At least assited living might not take every dime I have. The nursing home wants all I have except let me keep 50 dollars for my personel items. Which I could never live on plus I would feel very depressed with a mere 50 dollars in my pocket every month. I hurt so incredibly bad right now. I' taking 10 mil. gram vicodin and I can barely breath. I do realize I am completely complaining but I just feel like I am slipping away. When I first heard of Lupus I didn't think it was going to be like this. It isn't like people talked about it that much so it couldn't be that bad????????? in 2006 when I joined this support group I thought this would be a great place to get information and learn about the disease. I still didn't feel all that bad and symptoms were staying in check pretty well. with an occasional flare or legs made of concrete. However this past year it seems like things have just spiraled downhill quickly. Has that happened to anyone here? If anyone would like to share their experiences as of this past year or two. better worse, the same. I really would like to know. I think it might help me.
love you all
carol


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
 
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis.
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 

Post Edited (okie) : 6/5/2010 8:17:48 PM (GMT-6)


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/6/2010 10:53 AM (GMT -7)   
How are you, Carol? I've been thinking about you and praying for you. Just wanted to check in and send you a smile :). Take care.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


NanaBee
Veteran Member


Date Joined Jun 2005
Total Posts : 533
   Posted 6/6/2010 3:25 PM (GMT -7)   

Hi Okie,

I wanted to let you know that I am praying for you. I'm not always on here and I very seldom post but I do feel like I know you.  Please take care of yourself.  You are a blessing to us.

 

Mary Ann


 
** MCTD,Fibromyalgia,Raynaud's June 2005
**Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Lyrica, Folic Acid, Metoprolol, Lotrel, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/7/2010 8:50 AM (GMT -7)   
Hi Okie, I post mainly on the fibro forum and sometimes post here, I also have MCTD.
Before I became a HW forum member I read the lupus and fibro posts for almost a year.
You were always an inspiration to me and still are. Your humor, caring nature and taking
matters in stride is what I admire about you. I'm keeping you in my thoughts and prayers!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


southerndiva
Regular Member


Date Joined Apr 2009
Total Posts : 122
   Posted 6/7/2010 11:31 AM (GMT -7)   
Oh dear Carol,
My heart goes out to you!  What everyone else says is sooo true about you.  You are always an inspiration to all of us hear on the forum and I know I don't always respond to your posts, but I do read them and have been in awe of how you handle life and this illness.  Please know that you are in all of our prayers and we hope that you find ANY kind of relief soon.
 
Hugs and Angels,
Lynnette
 
DX - sle and carpal tunnel syndrome
RX - plaquenil, prednisone, lisiniprol, etolodac, darvocet, folic acid, hormones, daily vitamins

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/7/2010 9:51 PM (GMT -7)   
I have gone down hill over the last year, neurological involvment. I can't really explain it all because I have trouble explaining it verbally let alone writing it down. Let's just say I can't really read the way I used to, I am rarely online, I have the headache from heck and have since december and now my neuro wants me to spend 2 weeks in the hospital to see if I am having siezures or just muscle spasms.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/8/2010 5:14 AM (GMT -7)   
You people are all so kind to me. Ihave finally gotten a little sleep. That has helped some. What helps the most is knowing others are out there and regardless of how you guys feel you can still take the time to pull me out of this quick sand I've been in. I truly believe this is the first time I have felt that this is one battle I can't win. I can usually find comfort in prayer but even prayers wern't helping me this time.
I do have an update about an addition to my life! Well actually I have 2 additions. Bubba and sissy! they are about 1 lb a peice and 6 weeks old. I mentioned I had to get rid of my dog and thought kittens would be good because they aren't as hard to take care of. Well I had these ordered since the momma had just gotten pregnant. I got them two days ago. The bad news is the person that was suppose to take my dog decided not to. Since I am very particular it will take forever to find him a good home. He's a great dog smart and would be wonderful for taking to hospitals. I just won't let anyone have him. Anyway I got woke up at 3 this morning.I had 1 kitten sleeping on my forehead. 1 kitten sleeping with his nose in my ear. then my dog saw what was going on got jealous and jumped on my bed and did a belly flop on my chest. That was 4 hours ago. I have beenup every since and they are all snoozin away in my bed!
well I am going to try to get a little more sleep.
I just wanted you all to know how much you mean to me.
love you all
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
 
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis.
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 6/9/2010 10:17 AM (GMT -7)   
Hi Carol. My daughter moved to Florida so BF and I are watching her pets until she gets a place allowing pets. So in my townhome are 2 cats, 3 dogs, and 2 guinea pigs.  Pets can give you such pleasure, but I know caring for them is a female dog when you're sick. I'll keep you and your "family" in my prayers Carol. Love ya, Donna
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/9/2010 2:08 PM (GMT -7)   
Hi Carol, my dogs and cat and fish keep me going sometimes. My liver is turning to cirrhosis and my sun sensitivity is so bad now I get really sick whenever I have to go outside at all. I have blueberrries and blackberries as big as your thumb and can't even go out and pick them. I get a biopsy of my spine this week, I've been stuck in bed or recliner and my lungs are getting bad for some reason and I don't even smoke. Its so hard going through this pretty much alone. My son maks sure I have food and does the dishes and my laundry. I don't know if this is just me "decompensating" from liver disease or something else. I had gotten involved with my church recently, then I just got so sick this past year, and I've been mad too, sometimes I think at the church but really, I was just mad and now I'm just so sick I dont care. I know everything will be alright whatever happens, I mean it has to be, and I just turned 46, but lived a full life. I'm just too tiredand this was th outcome to my liver disease anyway. I have to face that it is what it is. I hate suffering, they gave me pain plls but they are making me stop urinating and that makes me suffer more. I have to be carefult. I wish I had something witty to say, but I'm just not together enough. You wanted to hear of people going downhill, Im sorry but I am one and this is about all I can manage.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 6/9/2010 4:07 PM (GMT -7)   
Carol, I am new to the lupus forum but I wanted you to know thoughts and prayers are with you. I hope if you can get some sleep you will feel a lot better. My dogs are a huge comfort to me when I get sick. They sleep in the bed by me and keep me company. All that unconditional love is so comforting. I hope it works for you.
d 1/09 with colitis sigmoid colon with some diverticular disease as well
IBS, asthma/allergies,  high BP, fibromyalgia, GERD, restless legs and periodic limb movement in sleep, low thyroid, the list keeps growing..........................
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil back on cymbalta for pain, nexium for reflux (trying again)
Blood test positive for Crohn's via prometheus ibd serology panel ASCA
Positive ANA rheumatologist suspects mixed connective tissue disease 4/2010
Collitis doing OK for now, it's fatigue and joint pain that are plagueing me right now!!!


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 6/9/2010 5:22 PM (GMT -7)   
Sending huge hugs to all of you. You're all such a blessing. I have been on very shaky ground lately. I'm not suicidal but I have not been feeling a lot of control over what I do lately. My brother  commited suicide and I could never do that to my mom. She has been through so much. It would put the final nail of the coffin. I never thought that I would feel like giving up. But yet it's been creeping into my mind. (no one ever think this it is an ulternative.) my brother was 29 and I am still angry with him 15 years later. But the pain and the pills and the tirness. I'm starting to figure out though that a lot had's to do with my health care worker. She wants to yack about her problems and talk wrestling and nascar. I do like nascar but I need cheered up and pushed to do physical therapy. It's supposed to be about me and it is about her boyfriend problems. Being about me sounds selfish but it has to me. This is life and quality of life. I just went down hill with this new lady.
Marji, I'm so sorry you are going through so much. Is the cirrhosis from the auto immune? I know my rhumy said bilateral cirrhosis. we descussed this a long time ago.
my prayers are with you. Like they say there is strength in numbers.
God bless
carol
furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,citracal,pottasium, vitB12 ,iron,xopenex,advair,spirivia,soma,Vitamin D, cybalta
 
Dx lupus, scleroderma, pos. fibro, high blood pressure. COPD, need left lung transplant. cervical cancer survivor, osteoporsis.
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 6/9/2010 5:30 PM (GMT -7)   
So nice to hear from you Carol, and like always thinking of others. See if they can can find you someone else, this lady sound too much like my 10th grade Latin teacher BLAH! Send smiles and hugs. Take care.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/12/2010 7:01 AM (GMT -7)   

Hi! Carol,

When I saw an Okie post, I was truly relieved and said to myself.. "Okie! yeah ". My faith in God helps, call Him what you will. I will say a prayer for you, and Marj, too and I hope you have a moment in your day when you forget how ill you are, even for just a minute. I have wrens nesting in a hanging house near my porch. Whenever I hear their wren song, I pause to listen and remind myself to thank God for my blessings, and pray to have the strength to get through today. We can never go back to yesterday, and I get too overwhelmed by today to worry about tomorrow, so God will have to and He does. And it is perfectly ok to be mad at your brother, and I am so sorry you lost him. I have been sick enough on two occasions in the past year when I could truly have willingly died. And that's not suicidal. I know what the feeling is to have lost someone you loved so much, and to think about the what might have beens.... hang on to some of your good memories. I am cleaning up my classroom for the final time next week, and have small construction paper elephants all over the place. A dear coworker made them for me when I first took the job, and when I felt so overwhelmed. She heard me comment several times... "Well, how would you eat an elephant?...... One bite at a time." And eating elephant casserole?   Without choking. Many of my days start with a bite, just get up on my feet to the bathroom, then walk to the coffee pot. Then another, take pills, wait for effect, get to the shower without falling, and my day gets on. Wishing you the best of feeling better,

suetoo

ps. your posts here are a blessing to me


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/13/2010 9:25 PM (GMT -7)   
Thanks Carol. I'm just getting really sick, they still don't know what all. They know part of it is autoimmune, some is from prolonged infections from my immune system breaking down, I just don't fight them anymore, and some is something else. I got my spinal bx and it went okay,but was painful. I wouldn't recommend it, unless you gotta have it. My lungs are bad now, my copd and sometimes the lungs and liver go together because the liver produces histamines, the things that cause asthma and allergies. But my problem seems to be lungs. I think maybe its scleroderma type thing, I've had stiff skin in my arms, the rheumie treats it. my mom now is dxed with mixed connective tissue disease. I don't think I'll ever know. I'm so glad to read some posts from you and to be able to get to the computer. I know it is hard for both of us to get on sometimes. I know how u feel. I have been bad depressed and mentally having trouble. so I haven't been on. Justremember I understand and I'm with you in thoughts and prayers.
 
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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