Hi Folks,
As some of you may know I feel like I do not have the right doctor for me.
I don't think he's a bad Doctor. Essentially, I would not be here if it wasn't for him. He got me into the right hospital, got me the right treatment and fixed me all up. However now that the "life saving" business is over I feel like I would like to see another specialist.
However - it's not so easy as calling up somewhere. I am essentially trapped. My family doctor believes he is the best doctor for me and that I would be crazy to go elsewhere. I like my family doctor; she has never steered me wrong and gets things done for me. However; upon this I thought I would make the sacrifice of switching my family doctor to hope to find better care. I did not want to do this; as I have had this doctor since I was about 6.
I have applied at almost every doctors office in my city. I have not heard back from any except for one internist, fresh out of medical school. He has vowed basically if the metaphorical *doo doo* hits the fan he will be my contact if I land in the hospital. However he admitted he could not help me much; but in an emergency and if I'm admitted he wants me to notify hospital staff and he will come to my rescue essentially and make sure the on call doctors don't screw anything up (like last time, but that's another story... he remembered me as he occasionally does ER and basically saved me from being the butt end of a doctors mistake). He has all my files and knows what's up; so while I feel a bit better about that... I want more!
Here in Canada everyone goes to the doctor for nothing. A splinter. So it makes sense... Why would a doctor take on such a complicated patient when they can make just as much money spending all day looking at people who just think they are sick or have a mild illness. No one wants the sick girl. Doesn't help that there is a massive doctor shortage in these parts... sigh
All of you seem to know so much about your disease.... What everything is called and what everything is. My specialist has not explained anything to me... He just tells me that everything is either OK or not good or up this or take less of that... I want to know what my issues are called.
I bled from my lungs; is this something that will happen again? My toes turned black and almost fell off (thank god they are pink and normal and pretty again!) I was covered in a weird rash... I want education. I might be 23, but I am not a moron. I go to the appointments by myself; I am an adult and I wanted to be treated like one.
A list of my symptoms. I assumed these were all grouped into wegeners; but at my last appointment he was calling them other things! He didn't seem to have time to explain things to me.
Eyes- Red, painful, light sensitive, blurry double vision vampire eyes (he had a name for this)
Kidneys - Blood and protein in urine. Beginning stages of renal failure. Urine was the color of coffee
Lungs - Severe bleeding (couple coughs could fill a sink and looked like you gutted something) (he also had a name for this - some type of some kind of hemorrhaging), nodules and severe breathing problems (cough and choke and can't catch breath. Was on oxygen). Coughing
Legs & Feet - Sores everywhere. Deep, pitted, nasty sores. Swollen feet, sore feet, limping caused by pain. Black, seeping nasty toes.
Face - Severe crusting/ulcers in nose, bleeding and raw meat like inside, stuffiness and sinus pain. Huge lumps of alien slugs. YUK. Sores in mouth and on tongue. VERY sore. Headaches
Overall Body - Extreme pain. Could not walk, roll over in bed or lift arms at worst point. Severe weight loss, swollen joints. Couldn't use my hands... I was essentially a vegetable.
Ears- Hearing loss severe in left ear, slight in right. Crackling
OK... I think I got it all. Almost all of this is gone. Only thing I held onto is the cough; and a bit of hoarseness. However.... Are these all NORMAL wegs symptoms? I just seem to be reading so much about people who only have sinus problems, or kidneys, or lungs... I seem to have all of the issues... is this normal? ... My specialist sometimes acts like it's not a big deal; or like it's all good... But then he will turn around in the next sentence and say "This is a very, very serious case.." or ... "You might only be 23, but you need to be thinking about your health all the time" He told me the other day "you'll be fine as long as your kidneys continue to stay good"... like what does that even mean???
Sometimes I feel so in the dark about the entire thing. You guys are all talking about your values, your individual specialized issues and I don't know any of that. I don't know any of my numbers, what stuff is... Basically if he calls he will say "received your tests results, inflammation is up, Add blah blah blah". If I don't receive a call, its all good. But I want to know these things. Can I just ask him to give it to me? It seems like it's such a big secret. My grandma wants to come with me and tear a strip off him; but I really don't want to resort to Joyce's wrath. It's a force to be reckoned with. Plus she will just get upset; I don't want her to be upset and worry about me more than she does. I only tell her things on a "need to know" because I am her baby; and I don't want to upset her anymore than she is. She has enough to worry about.
I am concerned because I am still going for bi-weekly testing. It was weekly up until two weeks ago. This makes me feel as though something is still wrong; as why is he making me go to all these appointments? 8 Months of weekly bloodwork and urine testing!
I feel OK right now. Lazy as all heck and feeling a little fuzzy. Never really was able to kick that fuzzy/duh feeling.
Thoughts would be appreciated
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