I feel so stupid even starting this discussion....I really do, but here goes anyway!
I have been seeing my Rheumy for 6 months now, and we definitely do not "mesh". She keeps stating I have autoimmune but she doesn't know what kind-because I don't fit the protocol. Well, now I do. I have had my first malar rash which I took pictures of, and 2 photosensitive rashes. I have displayed 90% of symptoms (hair loss, mouth ulcers, arthritis, fatigue, fog...) you get my point. I am an RN with 4 children (two of which are 1 and 3). I had to leave my job 8 months ago due to this illness. I brought up disability and her response to me in a mean voice and flat affect was "Good luck with that!". I called and informed her nurse about the rashes along with other new symptoms and explained that my GP had visualized them and documented them.
My call back was humiliating to say the least. The nurse was practically laughing at me as she repeated back what my Rheumy said. She didn't want to see pictures of my rashes unless they lasted over a week, she said if I am seeing a psychiatrist to continue doing so (which I am not-do not need to-and she knows that), and said I am not diagnosing her lupus, tell her to stay off the internet reviewing the symptoms!!!! As a nurse myself I know what it is like to watch medical staff treat patients as if they are hypochondriacs...it is horrible. that is why I took pics of everything. It is not like I WANT lupus...this is not only affecting me, but my entire family.
My GP was disgusted with her behavior and referred me to Hershey....here comes the dumb part....
When I put makeup on and do my hair I can be a pretty attractive woman, I could dress nice and look professional, and show no signs of illness at all. I have read that I would be respected and listened to more if this were the case.
Or do I pull my thin hair back into a ponytail, wash all traces of makeup off and show only ME.....who seriously looks like the walking dead-no joke- it is really bad. I am down to 95 lbs-and can't gain weight...pale with dark circles....I feel like I am slowly dyeing!
So this may sound extremely minimal to most...and I get that, but I need this new woman to listen to me...to help me...to become a part of my "team" of specialist that give a damn about my care. I do not want to be noticed only when I am in the hospital and on my way out!
Awe hun, I am so sorry you have to go through all that. This disease is not glamorous period. I have hardly ever had the rash on my face in the 19 years I have had this disease. It is so terrible when you have to feel like no one cares what happens to you. Yes dressing up could or couldn’t hurt you. If you are dressed up then they wonder if you really feel bad because you were able to take the time to do that. I don’t give a crap about what they think. If I’m sick, they are lucky I take a darn shower. You do what makes you feel comfortable.
I just went to the hospital recently with terrible bowel issues, horrible pains in my abdomen and vomiting. The doctor had the nerve to say he thought it was withdrawal from pain meds. Wouldn’t give me nothing for the pain. Comes back 3 hours later admitting me with pancreatitis. I said now you believe me? He said he still felt it could be part of the problem. I was so hurt. I was not even given pain meds until 8 hours after I got there. It is horrible. I also get kidney stones all the time but from Medullary Sponge Kidney, not Lupus. I qent in with a stone passing, the doctor wouldn’t even do an ultra sound or CT. Sent me home and said finda urologist. I couldn’t believe it. Two days later, I passed a 7mm stone and 2 more small ones a few days later. It is really said how doctors bedside manners are.
Look, it took me a while but I fought for it and won my disability case. I didn’t need a doctor to verify anything. Only reason it took me so long is because I didn’t have a lawyer at first. I would file ASAP hun. The sooner the better. They will pay back up to two years after you file. I was simple rewarded it for being undependable. The more doctors and hospital visits you have, the better. All together, i was given for my three children and I, 35000. I do believe that was even after my lawyer got her 6000. It’s not able just the money but the security of your children. I thank God for his part in helping me and I know he’ll do the same for you. The money sure went quick but I have my own place and furniture and comfortable now. I really hope things work out for you. Please keep me posted and I don’t mind questions.
My best guess would be to wait and see how you feel that morning. If you feel up to the whole dress-up routine on top of doctors and whatnot, go for it. Don't let the possible perceptions of others make your choices for you.
I've started wearing makeup and dressing up sometimes lately just because if my body feels this awful, at least I can try to feel like I look good.
I feel your frustrations. Why do Rhuemys think they must see that butterfly rash in order to feel confident of a diagnosis. It takes me three months to see my Rheumy and when I am in a flare I just ride it out or call my PCP. I take pictures of everything and type out summary of what has been going on since my last visit. I filed for disability and was turned down, got an attorney to appeal decision. There is nothing wrong with looking good on the outside even though you feel horrible on the inside.
Let them see the worst of you! I work in the med field too, when patients look glamorous they don’t seem to be taken as if they are sick! Let them see what you and most of us suffer thru daily, do not let their visual perception persuade their minds. You need a diagnosis, show them the awful destruction to your body lupus is! So glad you are going someplace else! Best of luck n prayers with u!
By all means do not hide any symptoms with make up. You can still BE professional by your knowledge and attitude and behavior and dress...and that is fine. Do not pretend to be in better shape than you are. I have been going around in circles with this disease since I was a child...it has killed many of my expendable organs over the years...and I have had probably every symptom at one time or another including the face rash...the discolored hands and feet...sores on my scalp and in my mouth...chills and nausea...rheumatoid arthritis and now osteo arthritis...a miscarriage...unexplained symptoms endlessly...and was diagnosed with Lupus twice...and then had it recanted the first time. This disease fools everyone...including doctors...rheumatologists...friends and relatives. Don't join the disease by fooling them also. I've played with...and been played by... this disease since I was 8 years old...I am now 68. I've had good remission periods and short ones...terrible symptoms when both my hubby and I thought I was dying and even my doctors were concerned a time or two...and I am still here...and feeling relatively good right this moment...although I limp pretty consistently from the rheumatism. The doctor you had has an attitude that just plain sucks...whether lupus or not... so ditch her...and keep moving forward. No one is quick to diagnose Lupus anymore for whatever reason. I have heard inidentified auto-immune disorder...lupus like auto immune disorder...lupus...and several other "maybe's". If they will treat you for your symptoms with meds that help...be happy...and file for the disability in the meantime WITH a lawyer...as they have better recognition than just a person unfortunately. Perhaps the hospital will be able to make a diagnosis...and treat you more consistently than an uncaring private physician. Wishing you the best of luck...and don't give up.
Wow Karen, sorry for things but that is great to see how long you have survived this. Please don’t take that as an insult. It really brings me hope. I do want ro suggest something to you thar might help with the limp. No garentees but anyway, it’s called michelle’s miracle cherry concentrate. I just bought some today from a health and wellness, organic stores. The guy told me it released the lock of arthritis on his grandmothers hands. It promotes healthy joints, supports sleep patterns and supports inflammatory response. I’ll keep you in my prayers and you make me feel a lot better about this.
Im so sorry that you had to go through this and I completely sympathize. I find that interns can get their medical expertise and knowledge at school, but what they are lacking and what the schools are cheating future patients is their ability to be human beings. It is just about impossible to find someone to listen to you and not dismiss you as a hypochondriac. I actually had a dr tell me that "you women find everything to stress over. Its all psychologically related". Ive gone through more doctors than I can say in the 15 years I have been dealing with this.
I hate to say it, but I think you have to show them how you feel most of the time. And if it means not looking your best, then so be it. Someone needs to listen to you and take you seriously.
I was told about a doctor that has is clinic in Enola and he is suppose to be good. Cares about his patience's and in the field knowing about this disease stuff. As soon as I get more information, I'll pass it on. What happen to where doctor's take an ethical code. I think that flew out the window. I am sorry, to hear what you are going through. Don't give up, stay strong and be more stern speaking your voice. Hope you find a doctor who cares. Best of luck.
I'm so sorry you had to deal with that. I can't believe she acted like that and said those things!! Get far away from that doctor.
It shouldn't matter how you look when you go to your appointment. A good doctor will listen to you no matter what you wear, what color your skin, gender, any of that. You deserve to be listened too and don't stop until someone does!
I'm a nursing student and you know how we always learn to be an advocate for our patients? You gotta be your own advocate now! Wishing you all the best with this new doctor!
Please change doctors. We should never allow ourselves to be verbally abused by anyone including these doctors. They don't live in our skin and go through the anquish that we endure daily. If a doctor does not understand and have compassion it is time to find a new one. Please make sure you do not wear makeup and by all means bring in those photos. Most doctors appreciate those. For me they were able to back date because of my photos. It is important they see your skin and hair as it is without the makeup. Best wishes!
I can not thank you all enough for your replies, and also sharing some personal stories. I am physically and financially drained at this point. I also have fibromyalgia, depression/anxiety (which I think this disease gives you anyway), insomnia, neuropathy, pain (always...somewhere) osteoarthritis in my lumbar, my body-hair-mouth all are slowly losing the battle. I can't think straight-find words-memory loss-I feel ignorant. Tears started to flow when my (very supportive) husband told my GP that it was difficult to watch his wife deteriorate before his eyes. I am enrolled to get my Master's Degree to become an NP in June......yeah right, I have to put that on hold now. What the hell happened to me? How did this happen so quickly? I was a night nurse doing 12 hour shifts and coming home to nurse my baby before my husband left for work. I was super woman-literally. I was in perfect health with absolutely no health issues. No allergies or comorbidities!
I try not to feel sorry for myself, and I know I am only functional because I am medicinally managed. This place makes me feel safe, like you are all in the same room with me. It is a warm feeling to not be burdened with being alone in this journey.
We fight through it. Remember, it’s not just your life you live for hun. You know that as well as I do when you have children. Make your family your focus. It will definitely keep you in the battle. Just dont neglect yourself. I think this was your body telling you this in it’s own way. You will definitely pull through this. Work on a diet plan. That can make a huge difference. Hair grows back, scars fade, pain dulls but you grow. Hugs and keep that head up. Tell your husband you aren’t deteriorating but morphing into a woman who has survived hell and came back a even stronger being.
I would make an appointment with a dermatologist and have them document the rash! If you can’t get diagnosed by the rheumy you can have the dermatologist do it. I have been where you are and I demanded the dermo take a biopsy and it came back with tumid lupus! Tumid lupus is a rare form of skin lupus and it was hard to diagnosed. I don’t get the butterfly rash just the tumid rash, and my blood work is always negative. But after three positive skin biopsies and all the other Symptoms they did finally diagnose me with SLE! Just a thought! Good luck and please remember you are not crazy!
Also if you do go to the dermo have them take two biopsies, one for the regular testing and a second to run an immune Fluorescence stain on the biopsy!