Its been awhile since I've written anything on here! I'm become so frustrated and angry with all these specialists. Since being diagnosed in May I've been still been suffering horribly since I started getting sick in December 2012. I have seen 5 different rhemys and quite frankly they all suck balls. I've been formally diagnosed yet other specialists are not taking me seriously. I am on no medicine at all (except for neuropathy & muscle issues). These doctors discriminate towards me because I am overweight thanks to Steroid injections that they gave me! Each visit they tell me I'm making things up in my head and go hit the gym! What an insult to a sick patient??
Each doctors appointment I walk out crying and upset. I have Kaiser for insurance which is the worst! Everytime I go to the doctors its $25.00 , if I need meds (that never work) it can be an extra $40.00. Imaging tests are $50.00! I haven't been able to work this whole time and have been denied or don't qualify for any kind of benefits at all. I am so frustrated and wanting answers. I have gotten sicker as the days go by and my stress is at an all time high. Any advice & encouragement I would so appreciate it. If anyone is from Orange County, CA please let me know, I know no one out here with Lupus :(
HK, I am so sorry for what you are going through but it sounds all too familiar. I have been told by my rheumy that I could be running marathons if I would just do more. Ha! I mowed the yard yesterday and now I can’t move and I am in horrendous pain. My yard is big but it is not THAT big. I don’t know what to tell you other than to keep pushing these docs to try something else until you get some relief. Perhaps you could go outside your area to see a doc? That would be difficult, I’m sure, but with where you live you shouldn’t have to go too far. (I would have a minimum 1 1/2 hour drive one way to see another rheumy) Also, I would get all my medical records from all my docs together and put them in a binder so you can take them to the next doc. I also have typed up a list of symptoms and the date of onset. And I have a brief medical history typed up. I just print all this out and take it when I go to see a new doc. Oh yeah, and a neatly typed list of my medications that I take to every doctor visit. By doing this, I save time filling out the new doc paperwork, I don’t miss anything and it saves my hands some pain from having to write so much. It is always difficult for me when I go to a new doc because I get easily flustered, especially if I don’t feel well. As to the weight thing, shame on them for making you feel that way, that it is all in your head and that you can somehow make this disease go away just by going to the gym. I do know that extra weight is hard on your body for many reasons and in many ways. Have you considered water exercise? It is very gentle on your joints. Hey, maybe if you get in the pool and get going, we could do a triathlon. You could do the swim, I could do the marathon. we would just have to get someone to do the bike leg. LOL. Seriously, though, I hope that you have a better day today and that you are able to get some relief. HUgs
There are ok drs up at usc orange cty…its a teaching hospital…the female rhuematologist has RA…you need a good primary care dr…keep looking…as far as fat fatty fat goes…we are all fat…predisone does that…get a hobby…keep yourself occupied…I use youtube…I’m learning crochet…knitting and guitar…feel better. …
Hi HK! I am really amazed at how quickly you had a diagnosis! Most people take years to get a diagnosis. Then it takes months, if not years, to tweak medication and physical therapies to get a measurable relief. I was having issues for years before a formal diagnosis. It was always considered depression, being out of shape, need to get a job, etc. Very frustrating. I was diagnosed a little over a year ago after my blood pressure sky rocketed. I am still tweaking medicines. I do not understand why you weren't given plaquenil right after diagnosis. After 3 months on plaquenil, I noticed I was having longer moments of feeling better and less joint pain.
I just recently went to my second rheumy to get his opinion. Before even diagnosing me, he has me going to a physical therapist to see what/if I get relief from some simple, non weight bearing movements. Honestly? my hip is really feeling better. For 2 nights now, I have not had hip pain that would wake me up.
Try to keep an open mind. Try to move a little every day. Going out and mowing the lawn would put me in bed for days! But, a little intentional movement will not only help your joints, it will help you peace of mind.
I’m from central California and I drive four hours north to Stanford for my rheumatologist. She is awesome. I found her by watching her speak at a Lupus meeting. In southern California you need to go see Dr Daniel Wallace at UCLA. He wrote the lupus book and I’ve seen him speak as well. When I spoke to him he knew I had lupus just by looking at me for a moment. Dr Bluestone is also very good and also at UCLA. You will never get anywhere at Kaiser, Sorry to be so blunt. It takes most of us around 3 to 5 years to get diagnosed as more symptoms arise. I’ve been diagnosed since 1990 but it took me 3 years and 5 doctors to get it done. Many don’t want to diagnose until kidneys are involved because it’s obvious then and if they get it wrong they can be sued for malpractice. Keep pushing on and during next open enrollment get rid of Kaiser for sure. I’m here if I can help at all just let me know. Much love, Sheri
Keep up the search with a good doctor. One caution I would say is being upfront about how many doctors you have seen. I have found out from other people that doctors will wonder why you are "doctor shopping" and think you are a hypochondriac. I know a couple of people this has happened to them. Not fair but true. If it were me I would take all those test results from different docs and delete their names off of them.
PS: I was also told it was in my head. That doctor did that too many times to too many people and he is no longer licensed to practice in the state of California… Also, I’m pleasingly plump too from many years of steroids. Don’t let it get you down. I can not eat for days due to lupus and still nothing budges. Be strong and be assured no one knows your body like you do and keep pressing forward.
Rants are a great way to relieve stress. Are you still taking plaquenil? It can take several months to get all the benefits from this med. This will be a process of finding the right medications and exercise to help with your symptoms. I no it is frustrating for things to take so long. Have you read any of the books on lupus?
I understand.
Since I am not overweight and “look” good, I suffer as much as you. Doctors don’t want to treat me because of my outside appearance. When they do want to treat me, it’s with another antidepressant. I am NOT depressed. They are making me depressed. I too get sicker and sicker everyday. My neurologist is the first one to take me seriously because he is the first one to spend any amount of time with me. Even he said that at first glance, I seem completely normal. But once around me, it’s easy to see the physical and brain damage of lupus.
Bless your heart! Keep looking for a GOOD rheumy who knows something about Lupus! I was lucky in that my doctor diagnosed me within a year....after multiple visits to the ER. The ER docs were worthless and I finally found one who suggested I see his wife since she was an Internal Medicine Doc and he knew she could request the proper blood tests.
As far as the weight gain, that is a fact of life when we are on the steroids. I've tried to deal with it the best I can and have adopted a "bite me" attitude if someone doesn't like the way I look. Who cares what they think? I'm fighting for my life here!
Walk away from the quacks who tell you to hit the gym, etc. You need support and medications that will help with your Lupus....there are support groups around the country. Try contacting the Lupus Foundation of America and see if they can help you.
DON'T GIVE IN TO THE NEGATIVITY! I've been fighting SLE Lupus for over 10 years now and I've seen it all!
If they have a rheumy they should also have a good primary care physician. Check.
awesomed said:
There are ok drs up at usc orange cty...its a teaching hospital...the female rhuematologist has RA...you need a good primary care dr..keep looking...as far as fat fatty fat goes...we are all fat...predisone does that...get a hobby...keep yourself occupied...I use youtube...I'm learning crochet..knitting and guitar...feel better. ...
Sweetie, if you have enuff work credits the Social Security Disability attorneys work for a percentage of your award - it means no outlays by you. I know friends who have had good results with Binder & Binder. Make a few calls using your yellow pages. I got SSDI quickly using a private attorney.
I have been told I can't get the weight loss surgery covered unless I have Type II diabetes - so tell the doctors you can't drop the pounds overnite and to treat the person they have, not the one they want.
