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dumplin
New Member


Date Joined Mar 2008
Total Posts : 14
   Posted 3/12/2008 6:44 PM (GMT -7)   
confused  
 
Hi, I hope that I have come to the right place, I am sort of lost. I have been sick, diagnosed and misdiagnosed for over 20 years. Divorced twice and verging on a third, because nobody understands how I am feeling. I am so frustrated!! My final diagnosis is SLE, Sjrogrens, Fibromyalgia with severe depression and anxiety disorder. My Rheumy started me on Ibuprophan 800mg 3x/day, placquenil 400mg, xanax .5mg 4x/day, effexor 300mg, adderall xr 30 mg, prilosec, zyrtec d, singular, ventolin inhaler prn, nasonex, numoisyn, amoxicillin and doxycycline for constant infections, and currently tobramycin drops for an ulcer on my lower eyelid. Wow! I have all the regular sypmtoms that i hear of, ie, severe joint pain, muscle weakness, deep depression and anxiety, sores in my mouth, nose, eyes, my eyelashes are falling out (does anybody else have this?), profuse sweating, exhaustion, weight gain!!!( when I am depressed I eat), dry mouth to a point I can't even talk, cold hands and feet, chest pains. After all of these symptoms, my husband still thinks I am crazy, because I look ok and have good days and bad. When I tell him I am not feeling well, he just rolls his eyes. I am going to a phychyatrist and a counsler for therapy and learning to cope, but my family will not join me. I really need support! we have a family business that I usually run, manage basically everything, but cannot work now. I have applied for assistance and have been turned down, so I am back to running the business on a good day, then having 3-5 bad days. Does anyone have any suggestions? I am new at this, and it seems that anytime I get a new symptom, I panic and go to the doctor because I don't want it to effect my organs, so I am being casious, and it is becoming very expensive and adding to my relationship problems. Any advice? I know this alot to ask at once, but as I said I am desperate for support and answers, or at least someone to talk to. Thanks for listening and my prayers are with all of you.  Thanks again, Dumplin 

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 3/12/2008 8:59 PM (GMT -7)   
This might help you if you are not familiar with the spoon theory.  There was no question in my case that I was sick and dying 2 years ago but many with lupus go through what you have and people around them do not think they are sick because they don't look sick.  Frustrating.  Today I look like the picture of health but I am still sick.  At least I am retired and my kids are grown so there is less pressure on me.
 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/12/2008 9:06 PM (GMT -7)   
(((((( Dumplin )))))))))

The hubbies have a really hard time with this initially. They can't fix it . . . therefore it does not exist. It is inconvenient and they cannot see it . . . therefore it does not exist.

If you had a broken arm, you'd have a cast on and all the world could see your illness. This Lupus illness is so invisible. *sigh*

You've found a great place with really understanding members. We really support each other. Many of us are really blessed to have family who are supportive. I'm sorry your hubby isn't in that place yet. He really might eventually "get it" . . . but it will take some time.

Bill gave you a great link. The Spoon Theory has helped many family members get a little idea of how we feel.

There is some good info in "Lupus Resources" (link at the end of my signature). Lots of suggestions for new members from everyone here.

Glad you found us!!!

Some hot tea for you sis!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/13/2008 4:38 AM (GMT -7)   
It would help a lot if your rheumy could explain to your husband. Also buy The Lupus Book and have him read it. I am so sorry your husband does not believe you are sick. I am at a loss as to what to say, I at least have the support of my husband- who knew what was wrong a couple years before I was dxed. Most of my family, including my 10yr old daughter, do not support me and think it is all in my head. The spoon theory is really nice, if you can get them to read it and actually take it to heart.
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, Sj√∂gren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/13/2008 6:48 AM (GMT -7)   
Welcome Dumplin. I don't have a lot to add tothe great info that Bill, Rosie and redrose gave you. I'm so sorry you were sick for so long without getting an accurate diagnosis. This darn disease is so hard on us and everyone around us.

You have come to a great place for support and understanding. Take care and I'm glad you joined us.
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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/13/2008 7:18 AM (GMT -7)   
Hi Dumplin,
   I'm also glad you found this wonderful group. They have helped me through so really rough times.
   I'm sorry your having to deal with all these issues. It's bad enough to have these diseases but, when your loved ones think its in your head, that can be overwhelming. My parents and kids are very supportive but, my ex's weren't. I truely hope your husband will read some of the things the others listed and research so he can see how this disease really effects you. Hopefully, he will understand soon and support you in the manner he should.
   Hang in there and keep us updated. You will be in my thoughts and prayers.
                                                                 Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


dumplin
New Member


Date Joined Mar 2008
Total Posts : 14
   Posted 3/13/2008 8:27 PM (GMT -7)   
Thank you all for your support! Dumplin

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/13/2008 8:50 PM (GMT -7)   
Dumplin,

My husband went into denial when I was first diagnosed. For a long time I struggled to get him to understand what I was going through but it was worth the wait because he finally understands and is very supportive. One of the things I realized was that I had never sat him down and told him exactly what I went through during the day, and when I finally did he was shocked. I listed every symptom I had, most of them on an everyday basis. Then I showed him all the bottles of pills my doctors prescribed, and so on. The spoon theory is great. I took it to my therapist who finally understood what I had been trying to tell her.

The most important thing is to take care of yourself. If he doesn't support you, don't apologize for not doing things he thinks you should do. Just be matter of fact with him and tell him you aren't up to it and if you push yourself too much you could get worse. I'd never argue the point with anyone but I jsut explain it. Hopefully he'll finally see the light. Taking him to a doctor's appointment with you is a great idea. If he's willing to go, you could suggest to him that he take a list of questions to the doctor.

Lupus is a rough disease to deal with and you've come to the right place. You'll find folks here who, unlike most of the people in your life really really understand what you're going through.

Good luck, and keep coming back.

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


dumplin
New Member


Date Joined Mar 2008
Total Posts : 14
   Posted 3/14/2008 9:42 PM (GMT -7)   
Hi again new friends,
 
Thank you for your responses. Does anybody have any eye issues like losing eyelashes or ulsers under the lid? Should I be going to a specialist for this or wait until I see my rheumy?
 
 I have only seen my new rheumy once when he tested me for lupus. The office called me saying all tests were positive and called me in a rx for placquenil 400mg. I have only been on it for 2 months, no improvements yet. I can only see my rheumy every 3 to 6 months, is this enough? He does not take my insurance, so I am a self pay. He is also the only one in town that I trust. Any answers?    thanks, Dumplin

okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/14/2008 10:10 PM (GMT -7)   
Hi Dumplin, There are a lot of folks here that see Dermatlogist for problems with their skin. I wouldn't be surprised if it had something to do with Lupus. A dermatologist could remove it and do a biopsy which could be a lot of help with a diagnosis. Unfortunately lab work doesn't tell the whole story and it can take months to years to get the answers. As for your eyelashes oh yeah that happens. I have lost a lot of hair all over. Thining hair on my head plus my legs don't have nearly as much growth.
I really hate that your family isn't supporting you through this. I'm a widow so I don't have the hubby problem but I do have family members who choose to turn a blind eye.
It's not like you choose to be sick. Depression and anxiety is all part of the disease. Not having insurance is really tough. I would absolutely talk to your doctors and try to get support to get some help with possibly/hopfully getting on disability so you can have some cash flow and at least medicaid. Get a lawyer that only deals with disability cases. You will owe them money in the end but at least you will have somone fighting for you. Somtimes it takes several denials before you are approved. Just don't give up on it. I think that might help you and your husband if you can find a way to get some financial releif. You have enough stress. There are some pharmaceutical companies that are actually starting to help people in your situation.
I have insurance but just all the traveling and gas and co pays can get to be too much somtimes.
Hang in there and keep coming back. You will find answers and support from some really great people.
hugs
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
I will never leave you nor forsake you!
 
 
 


dumplin
New Member


Date Joined Mar 2008
Total Posts : 14
   Posted 3/14/2008 10:46 PM (GMT -7)   
Thanks Carol,
I actually have had skin cancer on my chest 6 years ago, before I was diagnosed with lupus. Survived that, thank god. I did not know that you can get rashes biopsied, will that show malar rashes or lupus? I am so green about this, sorry. I have applied for disability once and was turned down, I submitted a reconsideration with an organization called allsup, that specializes in disabilities. Have you heard of this group? They were on a web site recommended by some other medical organizations. It has been almost 2 years since the initial submission, hopefully I will find out something soon. My doctors are holding it up by taking their good old time submitting reports. I will keep trying, I know this would help my situation. Any other recommendations would be great1 thank you so much. God bless you, Karen (dumplin)

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/15/2008 12:10 AM (GMT -7)   
If you are on plaquenil you should be seen by an opthalmologist before you start using it (to get a baseline) and every six months thereafter. If you have ulcers under the eyelid you have two reasons for seeing an opthalmologist. Eye problems are not unusual in lupus patients. I keep steroid eyedrops and antibiotic eyedrops at home for the times that I get eye infections or ulcers. It's nothing to be worried about, but I wouldn't let it go unattended. I get conjunctivitis quite frequently.

Hope your eyes get better. As far as the plaquenil goes, it can take three months or more before it takes affect. If you have tummy problems because of the plaquenil, try to hang in thre because they will most likely go away after a few months. It's worth the wait.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 3/15/2008 6:17 AM (GMT -7)   

Definitely go to an opthamologist for your eye problems.

 

 


Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 

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