Trying to find the balance
I am not much one to reach out to strangers for answers but my family and friends are having a problem adjusting to me having Lupus and I need to work through things.
I carried the blood draw lab order from my doctor in my purse from Sept of 2005 until January 2006 because I just didn't want to know. I did OK getting by and developed trust issues with doctors because they always said there wasn't something wrong, they couldn't find anything, or wanted to put me on a drug to treat a symptom without finding the cause.
One doctor, when I asked about what to do about my Raynaud's Syndrome because it was starting to get so the episodes were almost daily during the winter told me to stop smoking which would have been reasonable but I never started, I drink alcohol about once a year and never have done recreational drugs (all of which she also mentioned I should stop doing three different times in 15 minutes). In the same appt she prescribed anti-anxiety drugs because she felt I was to hyper about her recommendations. I stopped going to a doctor unless I was sick with something obvious for three years. Why bother? The next doctor I poked my neck out of my shell to ask for help from literally patted me on the leg and said, "Sugar, you just need to relax, lose weight, and focus on being happy." I literally gave up doctors that day.
My mother and grandmother moved to be near me and started going to the same doctor. He was good to both of them. Listened and made them feel heard. I decided to give it a try. He did listen but instead of walking down the hall to the lab I walked out the door. I was fairly certain by this time I had lupus or something like it from an article I had read and just didn't want to deal with any of it. What if the results came back negative and I still didn't know what was wrong? Anyway, I finally went in and he said that the results were SLE Lupus.
A long ramble to say, I need help. I need to know how to handle some of the stuff he tells me. I have not been able to make myself go to a specialist because I actually trust this doctor. He has me come in every couple of weeks and we discuss the next step (I am a bit resistant to my new limitations so he spoon feeds the info out a little at a time). I am apparently having a flare-up and he says it doesn't help that I am a princess and the pea type of girl. I either want to find another bed to lie in or fix the one I sleep in.
I have three questions at the moment:
I feel like I have someone pressing a hand on my chest every second of the day and that someone is pressing a finger on my throat. I cough once in a while but not continuously. Occasionally there is pain in my chest but mostly it is just pressure. Has anyone had this happen? It has been going on for a month and is driving me crazy. It is even in my dreams.
My doctor is a general family practice doctor. Am I endangering myself to just go to him? I trust him and he promised to send me to a specialist when he felt any alarm. My parents want a specialist, they are hounding me. My husband feels no alarm. He says he likes what my doctor has to say.
I made the mistake of reading information on the internet and found some pretty scary wording. My doctor says that I currently would be classified with mild to moderate symptoms. The bit of information online that freaked me out (and about made me choose to just forget about making life adjustments and ignore this lupus stuff) was about kidney failure. It said most people with lupus don't know that their kidneys are failing until it is too late. Is this true? (My doctor has been out for three weeks because his child has cancer and he is understandably taking care of his own family. I went to one of his associates and she was nice but looked blank and gave me a prescription for glorified tums.)
I know this is long and rambling. I apoligize. Needless to say, I now overexplain myself when dealing with medical issues. I am still questioning the diagnosis. How does he even know it is the right disease?