Hi guys, I am new here. This is my first post, but I am so frustrated, I don't even know what to do with doctors anymore so I need to get some advice.
I've been diagnosed with Lupus for maybe a year and a half now, although was seeking a diagnosis months before I actually got one. I was also diagnosed with Fibromyalgia, and gastrointestinal issues (Eosinophlic esophagitis and GERD) at the same time. Had been previously diagnosed with interstitial cystitis and IBS in past. I am on a steady round of meds- prednisone, cellcept, plaquenil. omeprazole, lyrica, bupropion for some add issues/ocassional depression, adderall for add/ energy to get through the day, as well as occasional muscle relaxers, trazadone for sleep/fibro issues, a couple of painkillers. I think I listed everything there.
So I am a weird case of lupus. My symptoms are LITERALLY textbook, but my labs are all weird. They diagnosed me symptomatically.
I have had the butterfly rash (BAD), muscle/joint aches, extreme fatigue, chills/fevers, excessive protein in urine, etc.
Since diagnosis, I have tried to be a trooper but I don't feel like I have control of what is going on. I always felt like I was just living in a powder keg, and trying really hard not to ignite that spark that was going to burn me down. I knew that pushing it too hard would do it---but I work in a high stakes job, where the hours are often long, the stress is often great, and sometimes there really is no other option than to push yourself to get what you need to get done.
Since diagnosis, I've been hospitalized three times. Last year (April/May) for 9 days (the longest nine days of my life!!) for a very bad kidney infection--was also having heart issues, showing some hydronephrosis on kidney, something about a lung/heart issue, not sure. They two months later in July, was hospitalized for like another 6 or 7 days for a gastrointestinal bug that turned me into complete disorder. Then just recently, about 2-3 weeks ago, I was hospitalized for over a week again, due to another gastrointestinal bug screwing over my immune system.
Now, keep in mind, I do not go to the ER unless I literally feel like I am going to die. I hate hospitals. I know that once they see I have a fever and some/any symptoms and I say the word "lupus" they will admit me -- to avoid any liability issues.
This last illness, I was sick for over two weeks, toughing it out on my own, until I got to the point where I literally could not sip water without throwing it up, and I knew I was severely dehydrated. I seriously think my last hospital visit, although triggered in large part due to a nasty infection of norovirus, was also triggered by a lupus flare. The whole thing started with a bad butterfly rash. I had the worst joint/muscle pain ever.
I was released from the hospital, really before I felt like I was better. I had stopped puking all the time, but immediately got another "infection"-- a sinus infection. And I was miserable. The cold sweats, the muscle and joint pain, the sheer state of brain fog, and feeling of desperation -- like it will never go away.
I got to the point after the release from the hospital that I was soooo sick but did not know what to do. I didn't feel like it was "emergent" warranting a trip back to the hospital, but I couldn't get a hold of my doctors to help me or tell me anything to do.
Specifically, after struggling with the thought of going back to the ER all weekend, I called my Rheumy at the moment her office opened Monday morning, and also my Primary (who I haven't seen in almost 1 1/2 years, since I have been tossed to every other specialist under the sun). My rheumy's nurse told me she would give the message to the doctor, and the doctor would get back to me in 24-48 hours. I told her that was unacceptable--that I needed to know if I could be seen and I felt like it as important. She told me to call my primary, so I called my primary and got an appointment for that afternoon. Literally, when I got to my primary's office to sign in, my Rheumy's office called and said--yes you need to go to your primary.
So I go into my primary. Bring every inch of hospital records, 2 page list of medications, tell him my long saga of story. He looks as me and says "Why are you here?" Um.....is that not obvious from the long parade of horribles I just told you is going on in my body? He then said "You need to go to your rheumatologist, this is a lupus flare, I haven't the foggiest. You shouldn't be here." I said--SHE TOLD ME TO COME TO YOU!!! He said, well go back to her because I don't know what to do with you. Then, without even examining me -- no listening with stethoscope, or looking at my nose/throat, etc.-- gives me a rx for an antibiotic and says, Here you can try this and see if it helps with your sinus infection, but you have a lupus flare and you need to go see your rheumatologist.
So, at this point I am so pissed off, because I just paid this guy $50 to tell me he wasn't going to even look at me, listen to me, or treat me.
My rheumy's office is in the same building, so I marched downstairs, and landed in a heap in her office in tears, demanding to speak with a nurse. At this point I was so tired, exhausted, sick and CONFUSED that I was quickly becoming desparate at my situation. I said-- look, here's what happened with my primary--you sent me there, he won't treat me told me to come back here, and I don't know what to do. Well, my rheumy was not there--they pawned me off on some other doc I'd never met, who barely spoke to me but said she'd "run some tests". Although I was not happy, because I was essentially ending up back home with no direction as to what to do, I at least felt a little bit better because she was running tests.
And I knew, KNEW, because I felt like Satan's armpit at that moment, that my labs would be atrocious. They had to be, because this was one of the worst lupus moments I had experienced. So...I wait. Two days. Do not hear from doctor. Then call and say--hey I'm having serious issues, can I actually talk to my real doctor and know my lab results? So, the doctor calls me back and says-- your labs are really fine--nothing remarkable at all. You are just having an infection. You'll get over it. You should see your primary. I told her the whole story with that, and could tell she was pissed (I'm not sure if it was directed at me or the primary). She said, no you are not lupus flairing, you have an infection and he should treat it. At this point I tell her--look I'm caught in a medical beaucracy-- I don't know who to go to for whatever weird awful ailment I have. I clearly can't get in touch with your office for DAYS when I am sick, and my primary has basically told me he has no knowledge of lupus--so what do I do?? She said "go to your primary if something like this happens." I'm now like, Okay, yeah right, fat chance. Not going to him again so he can act clueless. I ask her for the names of other primaries who have a good working knowledge of lupus. She gives me the names of a couple.
Now, I have always followed her advice, although sometimes I don't necessarily agree with it. I have gone, diligently, to every doctor she has referred me to-- the gastroenterologist, the dermatologist, the kidney doctor, the urologist, the opthamologist.
I have, at least 1 or 2 doctors appointments every month, and on top of that, extra outpatient lab testing, etc.
I'm now at the point where I feel like I've lost the fight. I've been off work for approximately a month now. I have pretty much resigned myself to the fact that I am going to have to quit, or make serious changes in my schedule--but don't know if that is possible, either. My husband and I are seriously considering trying for disability for me at this point, which I am so frustrated about. You see, I am in a professional career. I have always been the type-A, overachiever who was at the top of the class and winning awards, etc. I have never let obstacles get in my way of success. I have just had my professional degree a few years now, and I want to be able to do something with it, obviously. But then I get this horrible, awful illness that is knocking me down at every step. I am certainly not the type of person to cower easily and admit defeat, but it has gotten more than I can handle and I do not have the support I need to get through.
To top it all off, my "professional" degree is in a field that requires great analysis, research, writing etc. I was in the middle of a HUGE important project when I got sick, that I have had to literally scrounge every scrap of strength to do. How do I write a brilliant, complicated analysis when I have so much brain fog that I can barely even tell you my own name? I have these headaches that are so ridiculously horrible (which I think are side effects of my other medication) and was out of my heachache meds that my Rheumy prescribed in the first instance. I have been trying, unsuccesfully for THREE WEEKS to get it filled. Three weeks! And the headache med is not a controlled presciption needing a written rx, it is fioricet. So finally, last night, I get the headache med. I had been prescribed it for almost a year, and had like 5 refills on it or so, so it's not like I was overusing it. The nurse from my rheumy's office called and left a message on my phone saying "we refilled your prescription ONE time, but we won't refill it again, you need to go to your primary care doctor to get it refilled." Um, WHAT?
So I'm just supposed to stroll in to some new random primary's office. "Hi, I'm *WonderfulWorld*, you don't know me. I have a shitty, complicated medical history. My last primary was so stumped by me he said 'he hadn't the foggiest' and my rheumy won't prescribe me the headache meds that she herself first prescribed to me, so even though you don't know me and I'm not otherwise acutely ill so as to require your care right now, what I need you to do is to prescribe me this pain/headache medicine that for whatever reason my rheumatologist has decided that she will no longer fill for me herself. THANKS!"
Yeah, I see that conversation going well.
I don't know what to do. I'm physically and mentally at one of the lowest points I've been in this illness because I feel like I am just getting worse, not better, and no one will do anything to help me until my lab tests literally show that my organs are exploding inside me. I mean, no one seems to care about the day to day toll this takes on us and the pain, fatigue that is sometimes the worst part of it all. You see, I KNOW when I am sick--it is my body. My lab tests may tell you I am a-okay, but I am NOT. (Conversely, why is it that when I am feeling relatively okay, my lab tests show real problems? Is it just me, or do lab tests not seem to have much correlation to the degree of awfulness that we feel?)
I don't know what to do. My rheumatologist is highly sought after, allegedly one of the best in the state. She's a "best doctor" you know. It takes nine months, LITERALLY, nine months to get into any rheumatologist in the city I live for a first appointment. Trust me, I called every single one when I was first referred. I did see another rheumatologist in town when I was first getting diagnosed, to get a second opinion, and I thought she was lovely, and even much more thorough than my first rheumy, but after I left and she ran labs, I called in a week to check on my labs and got into a real fight with her office staff because they would not release my lab test results or medical records to me, stating that their office policy is that they will not release lab results until the doctor meets with you at your next appointment (1 month later). Basically a blackmail tactic-- you make another appointment or you don't get your lab results. I argued with her about it, but technically under HIPAA they get like 30 days to give you your records, so in a round-about way she could accomplish her same goal legally. I felt like that was not the kind of office I wanted to deal with, because I want to be an active, not passive, participant in my own health care and want to know as soon as possible what is going on in my body-- not have to wait a month to find out.
So now I don't know what to do, where to turn, or how to pull myself out of this flare that seems to be never ending. Am I the only one who has this kind of luck, or is this pretty typical of what we lupus patients can expect?
Does anyone have any suggestions about what to do/ where to do from here?? Honestly the stress of dealing with all the inept doctors and pharmacies on top of the regular stress we have from dealing with a chronic illness is enough to make anyone feel lost and frustrated!
But I must sleep before really getting into a deeper reply. My sleep phase is so delayed as it is and I’m prone to getting caught up and shorting myself even more… I do so much worse when I don’t sleep 8 hrs! Luckily without a job right now I have a better chance of that