I just want to quit!

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/5/2009 7:49 AM (GMT -7)   
I just hope my sense of humor can get me thru this. Wait a minute (carol is looking for soap box) idea .
They take me off the steroids so I can get a transplant, but they aren't rheumies. All they care about is my lungs. What about my joints? The only thing holding me together is the plaquenil. But I have to sleep with heating pads and can't put my jacket on by myself. I wasn't thinking the other day went to throw my leather jacket on and cry If i hadn't been in church I can only imagine what would have come out of my mouth. All I could do is bite my lip and had tears rolling down my face. I have a new pcp and I asked her for somthing for inflamation (nonnarcotic). She said to give her a couple of weeks to go over my records. A COUPLE OF WEEKS! Is she insane confused . I got a call yesterday to remind me I have an appt this afternoon with a heart dr. because I need a left and right side heart cath. Shoot somebody forgot to tell me about it. Fortunately it's just a conference. I went to a dr. about a colonoscopy and the scope in my throat. This guy HATES people. He is in it for the money. I think he decided to be that kind of dr. so he could cause as my pain as possible and get paid for it. He told his secretary to make me another appt: I told her never mind I don't like him and I ain't coming back. I wouldn't let him touch my dog. I don't care if we like each other but we have to be able to work together. He laughed at me and told me my pcp is not a real dr.! That he know everyone and he doesn't know her. So when I went to her office I got about 5 cards which said not only is she a MD but her dr. is a specialist!. So I'm sending him a card. With a note on the back. (use your own thoughts there). Thursday I have to go to pulm. therapy to talk to the dr. about a program. MWF will be my days for exercise. I don't know when I will have time for all the other appts. turn
In the mean time my ankles hurt to walk. my big muscles hurt. My I can't raise my arms. I can barely sleep because of the pain. I just don't know if I can do this.
I guess one day at a time.
love ya guys.
Don't feel ya have to answer I'm just ranting.
 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/5/2009 9:09 AM (GMT -7)   
((((((Carol)))))),

It's just so awful that you have so many doctors and still feel so bad. Do you like your new PCP? Aren't you seeing a rheumy? Hang in there girlfriend and keep pushing for these doctors to help you. Your situation is so complicated and you're sure paying the price.

Love,

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 5/5/2009 12:12 PM (GMT -7)   

Hi Carol, How my heart hurts for you. I wish I could visit you with a warm cup of tea and give you lots of encouraging words. I truly can't imagine the pain you are in. I whine when the lyrica doesn't hold the pain from shooting down my arm off and on throughout the day. You are in pain 24x7 and waiting to be operated on in a HUGE way! To top it off you have to deal with doctors you just can't trust. I don't know the answers to give except this. I TRY to hold on to the hope that God works for the good of those who love Him. Keep holding on to that truth. With each pain it is a moment to moment living for me. I truly can't do a one day at a time. I am too weak for that right now. Please know I hear you and am truly so sorry to see you in such pain and endless appts, and chaos. I just prayed for you.

In His Care, Tammy


I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/5/2009 6:32 PM (GMT -7)   
(((((((((((( Carol ))))))))))))))

Thinking about you!!! Your in my prayers sis!! Its been a really rough time for you.

Hugs, prayers, tea, and . . .

Blessings!

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 5/5/2009 11:02 PM (GMT -7)   
Carol, I would get another doc. too he sounds like a idiot. Good for you telling the secretary how you feel about him. Geeze you have so many app. so close together I'd be exhausted, no wounder your having so much pain their not giving chance to rest. I just wish they can give you something for your pain. Good Luck... Thoughts and prayers
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 5/6/2009 4:25 AM (GMT -7)   
Hi Carol, I'm still thinking of you and praying you will find rest , peace, less pain and some order in the midst of this awful trial. Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 5/6/2009 5:34 AM (GMT -7)   
(((Carol))) I'm so sorry ur in such pain. Would ur pulmo doc be able to prescribe something for pain if u call him? Maybe give respiratory docs a gentle reminder that pain not only sucks, but it's very stressful too. As for ur doc who did the colonoscopy, he's a genuine ass#*!( so at least he's in a profession where he's surrounded by those he loves. Well Sweetie, I hope u can get some rest and docs give u something for pain. Keep us posted. Love, Donna

Systemic Lupus ('05), depression, diabetes, fibro, gerd, hypertension, IBS, sleep apnea  Rx: Cellcept, plaquenil, prednisone, celebrex, lisinopril, actos, lipitor, nexeum, prozac, seroquel, wellbutrin, actonel, tylenol arthritis, neurontin, phenegren, flexeril, vit C, multi vit, flaxseed oil.  Acupuncture  "Welcome to lupus, where the strange is ordinary and nothing is normal." Donna 
 


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/6/2009 12:41 PM (GMT -7)   
Carol, I am so sorry this is so hard on you, I can only imagine what my life would be like without prednisone. I wish I could do more than offer a shoulder but that is all I can do now. If you lived closer I would make my homemade veggie soup and bring you some. Have a cup of hot tea with honey and take a long soak in a hot bath. I hope that you begin to feel better or get something for inflammation.
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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/20/2009 8:30 PM (GMT -7)   
Hi Carol,

Are you feeling any better? Was just thinking about you and wondering how you are doing this week?

Blessings!

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 5/21/2009 10:36 AM (GMT -7)   
Carol, I'm wondering how you are today too?  HOw is the pain?  Any news from your doctor? I'm thinking and praying for you too.
 
Love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/21/2009 11:33 AM (GMT -7)   
Carol, I really hope things have improved since this post was made.
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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/21/2009 12:21 PM (GMT -7)   
Carol,

I'm thinking about you too. Haven't talked to you in a while and haven't been too active on the forum so I haven't gotten word from you here either. I hope that doesn't mean that you've fallen off the cliff again. Maybe you're feeling better and staying away because of that??? I can hope, can't I.

From the activity here, it's apparent that we all want to know that you're ok.

Take care of yourself Carol.

Love,

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/21/2009 9:32 PM (GMT -7)   
Carol, I'm sorry about your pain. Its awful,they just think we can suffer. Sometimes I thnk these docs are misogynists, hate women,maybe got takento the cleaners in their divorce. I guess Dr. Jeckyll and Mr. Hyde aren't so differnt after all. I'm glad you are getting decent treatment from the others. I cant get one to care if I live or die, wont do anything, order tests or anything. Well, it sounds like the woman doc was a bit spacey too on the pain med thing so its not just the men. I hope you can get something soon. I take ultram. it isn't a narcotic and isnt an antiinflammatory, but takes the edge off. I hope you are okay as can be. YOu must be sick of docs though. Does it seem to you that they lack common sensesometimes? I don't know, I think Darwin lied. People aren't getting smarter as we "evolve"...
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 5/22/2009 6:42 AM (GMT -7)   
Thanks ladies, I am so blessed to have such great friends. I have good and bad days just like everyone. I am kind of down right now. The area on my leg where they put in the cath is about the size of a half of gulf ball. My SIL felt it and her eyes got huge. So I called my dr. who wants me to go see my heart dr. which is 3 times as far to go. My pcp is right down the street. I at least breathed easier, because my heart dr. gave me an all clear. Than out of no where I got a letter yesterday from a heart surgeon. They want me to go see the 9th. In oklahoma city. This is a total curve ball. I called them and they won't tell me why other than the head of the lung department set up the appt:. I got the mamogram done. My sec round of hep shots. pelvic exam. I start pulm. ther. next wenesday. If the hearth cath area is better. I Just wish they would find out one way or another if this is lupus in my lungs. All I've gone through if they say no I don't know how I will handle it.
See this is why I don't come here muchI'm such a whiner.
love you guys
carol

 


 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 

Post Edited (okie) : 5/22/2009 7:58:55 AM (GMT-6)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/22/2009 2:12 PM (GMT -7)   
you have good reason to vent. You are not wwhining believe me I know whining. Whining has no purpose other than to make others feel sorry for you. You are venting and being productive with your complaints.
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


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 5/22/2009 3:43 PM (GMT -7)   
Carol
Your such a strong women,you inspire me how much one person can go threw, so vent all you like. I hope your apps. go well. But get to the doc. sooner so they can look at your leg. Take Care
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 

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