Re: Vent/Rant (long reply)

[Guest guest]

Kirk;

I think because we respect our doctors and they seem to be on a pedestal that we don't argue. I am the same way and will probably always be. I know that maybe if you could find the courage to present your thoughts as you have here he would listen. Often doctors do not truly understand how desperate we are because we hold back. There is a doctor in our small mountain town that does not believe in pain medication prescriptions of any sort. He was good to give me tordol shots when I went in but no scripts. Well, I no longer see this doctor even though it means a 60 mile round trip off the mountain for all medical needs, even a hospital. Please tell him if you can how badly you need something now, not next week or trying other things.

Apology accepted as I do know that sometimes we just need to be able to say what we feel to let off some of the pressure and I know dear friend you have had more than your share. Thank you for considering my suggestion.

I hope your evening is well, Melt

----- Original Message -----

I am more than willing to do whatever my rheumatologist tells me to do. I have no quarrel with any drug combinations, and just want to feel a lot closer to normal than I have this year.

I have noticed that I do have a very unusual inability to speak my mind to my doctors though. I don't know why, and can not for the life of me figure it out. I am a very assertive person 90% of the time, but have always choked when it came time to speak my mind to any of my doctors.

[Guest guest]

I am more than willing to do whatever my rheumatologist tells me to do. I have no quarrel with any drug combinations, and just want to feel a lot closer to normal than I have this year.

I have noticed that I do have a very unusual inability to speak my mind to my doctors though. I don't know why, and can not for the life of me figure it out. I am a very assertive person 90% of the time, but have always choked when it came time to speak my mind to any of my doctors. It may be because I know little about what they do, and learned a long time ago to shut my mouth unless I knew what I was talking about. I don't hold back on what I feel like mind you, but I also don't argue with them, nor try to force their hand.

This morning is a good example. I went to see my PCP. I asked him what was wrong with my kidney, and he told me that something showed up that could be a growth, but could also be a "shadow" and nothing at all. We also were talking about how I was doing, and what my meds were. I have one script that is out and one almost out. He took care of that. I also told him about my trip to the ER and the unreal headaches I have been getting. I told him that the ER nurse told me that Dilaudid comes in a pill form, and that I know it works, and want it. He came back with "Well, let's try to increase the dosage of this as that should help out the headaches. Check back with me after you have the ultrasound". Sounds fair enough, until you consider that I have been hearing the same things "once we get your blood pressure down" and "these are real good at preventing headaches" "Let's try this" that his answer is unacceptable to me. They found something that works. I am not a human guinea pig, especially when the end result has been "me" suffering at 3:00 AM unable to sleep but fighting the urge to go anywhere near the ER like you would not believe.

I asked him if I should look into a pain clinic, he said he didn't think it would help. I left it at that, and shut my mouth.

Well, I am going to be the one who finds out if it will help, as I have an appointment next Thursday at a pain center 2 miles from my garage.

The thing that upset me this morning is that I didn't argue with him. I have been in a very anxious and "edgie" mood the last two days already, and today I have added the "I wish I was dead" mood, as I am so upset with myself for shutting my mouth. Maybe it has something to do with my having him as my doctor for longer than I can remember. I do respect him, just totally disagree with him on this front. My take on the whole thing is this.......subscribe me 2 pills if you are so unsure of my need for them, and than go from there. I am nor have I ever been a "druggie". I was afraid to go near them as a kid, in the military and subjected to random testing, and seen enough good people become addicted, ruin their lives and die to even consider "abusing" a drug. I know I am in more pain now that at any other time in my life, yet can not seem to convince the people who can most likely help me in this situation. I know I need to stand up and yell, but to date have always sat down when the opportunity presented itself. Everytime I have told my rheumatologist about these headaches he has always said he didn't have an answer for them. I have yet to challenge him to find one. Initially, I figured they were right and that these would simply go away. I wish it were that simple.

My thinking of their reasoning is that with all of the bad reports in the press that have been out in the last few years, they don't want to take the chance of prescribing something along those lines. Heck, that is a nice way to look at it from a political correctness standpoint, but no way to treat anyone who may truly benefit from them.

I am at a loss to say anymore right now. I apologize to any and all I may have offended last night. I have a bad habit of not thinking when I am in a rotten mood. I am not in a good mood now, but the edge is off of it.

Kirk.

Re: Vent/Rant

Hi Kirk,

PLEASE, speak with your doctor about trying Enbrel/MTX. I can't praise that combination enough !!!! We all know that what works for one, doesn't always work for the other but we have to keep trying until we find the pot of gold !! Ah heck....maybe they'll legalize pot and we'll all not give a hoot how we feel !!! But, seriously, I hate to see you in so much pain and misery. I know there's something out there that will finally find you.

I pray that your kidney spot is just a spot and nothing more. Too bad you have to wait until next Tuesday as I'm sure you'll be on pins and needles until then.

I had a Lyme's Disease test, amongst a thousand others, and it turned out negative. Both of my Rheumatologists knew beans about Stills (probably never heard of it) and tried every test known to man to try and diagnose me. I was an "experiment walking"...... It took Mayo Clinic to finally get it correct. Bless them....bless them.... bless them !!!!

Hang in there.....that's all you can do until something clicks and you'll be back to your cheery, well self again.

Mi. CarmenVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.