Re: Vent/Rant

[Guest guest]

(((((((((Kirk))))))))))))

Man I hear ya. I've been having my fair share of problems too. This week has been absolutely awful for me physically. I could especially relate when you talked about your legs giving out and the burning skin. I've had it since Sunday and it is about to drive me completely crazy. Probably my symptoms are much more noticeable because I couldn't afford my MSContin this month and all I have is the Lortabs. Unfortunately, I'm eating way to many tabs and I'm going to have to ask my brother to pay for my prescription for my MSContin. It really bites a big one.

I understand your frustration and I feel it right along with you as I am sure many folks on this list do too. On days like these I like to be an ostrich and stick my head in the sand. Just remember that it will go away. It does get better, but we have to find what works for us.

Hang in there my friend.

Much love,

Terry

[Guest guest]

Kirk you need to listen to your body its not gonna heal if you keep workin like you are.I know you said you feel you havta work,but its time that you thought about what your doin while the disease is this active you need rest,your doin more harm than good.I also realized this the hard way the same as what your goin though,in my own mind i was capable,but my body rejected the idea im just geussing here but i prob went into work about a dozen times which wasnt smart evenually i took the time off and listened to my body.As for your kidneys,i hope your doctors can figure out exactly what it is thats not supposed to be there.Please dont beat yourself up like you are,try get some time-off you need a break or your gonna end up takin one whether you like it or not.Do what you can maybe you can still go in but more of an advisory position,other than that you know we all are pulling for you,it hasnt been that long give the Enbrel time to work like Carmen has told ya you might have to add Methotextrate too.Take care. d.Canada

Vent/Rant

I feel like I have fought 14 out of 15 rounds against this disease this year, and in reality have probably only fought two.

I received a call from my rheumatologist today regarding my CT scan I had last Friday. Seems they found something on or in my left kidney and need me to go for an ultrasound to investigate further. I am going next Tuesday. He said he didn't know what it was, and really didn't say much else, aside from asking me how I have been feeling. I told him about my trip to the ER and the mostly every other day headaches and such.

I am getting worn down with this shit! I have been in a great mood considering the pain I am dealing with, but I can feel myself starting to go "numb" with fear and sick of the anxiety. I was afraid of the CT scan, than anxious for the results. Now I am feeling anxiety damn near worse than I was after being diagnosed with this. My mind is racing in a hundred directions at once, and I am getting this strange sense that the majority of my days are behind me. I don't know what can possibly be wrong with my kidney, but can't help but think the worst. Tom Petty has a lyric in a song "Most things I worry about, never happen anyway". I sure hope that rings true. The part that makes me worried is that I had real bad pains four or five years ago on my left side that sent me to the ER . The ER doctor I had needed a major beating as she yelled at me after answering that I had three beers two days prior and that night had eaten cheese steak sandwiches with Jalapeno's and Swiss Cheese. I also told her I drank about 5-6 cans of Iced Tea per day at work. She literally yelled at me "This is what you get for eating hot peppers and drinking beer!". She told me I gave myself an ulcer and sent me home with antacids. I went to my PCP two days later in pain and was sent for an ultrasound, but nothing showed up. No ulcer ever showed up, and my kidneys look ok, I guess.The consensus from my doctors was that it was probably a kidney stone from the iced tea. The pains went away almost as quickly as they came, and I had forgotten about the event.

I get to see my PCP tomorrow, and aside form insisting on better pain killers, and "dying" to know what I am in for. I know I probably won't get that answer, as no one can see into the future. Being of the mechanical mindset, I can accurately tell when an engine or a transmission is on its' way out, (usually way before it "dies") and hope they have the same kind of insight. I already blanked one fishing tournament last weekend, and can already figure I will do the same this weekend as my mind can not stay focused outside of work. I shouldn't even say that as my mind was useless today after the call. I keep trying to be positive, but today nothing I do seems to be working towards that effect.

I also keep getting bombarded by family members (not my wife, thankfully) that insist I have lyme disease. I was tested and the results were negative. They keep telling me that there is another test that is accurate, and that I should seek it out. After reading all that I could about Stills and comparing my lab results to the findings on the International Stills Disease website and hitting the bull's-eye on most (if not all) of them, I am pretty sure my doctors are correct. I do wish it were something "curable" like Lyme disease, but figure if there was a test that was that accurate, every doctor would know about it. This is really amplified after spending all day Monday with a few members of my extended family as we took the day off and took the kids to see than Tank Engine in Strasburg, Pa. I was told that I am nuts for not "seeking" this "magic" test. My cousin is a physical therapist and has a patient who has Lyme but was undiagnosed for twenty + years and he says his symptoms all match mine. I may not be a doctor, but have read a bit about Lyme and don't see all of the symptoms match up as well as he thinks. I am not mad at them, as I do know there are many who care about me( and grateful for it), but I find my mind wanting to tell them to shut the **** up when they get to talking about this. I mean, I wish they were right and all, but it just doesn't add up. I never had the "bulls-eye rash", and I always do a tick check whenever I am outdoors, in the woods and such. This is something I learned in the Army, and have been doing since I found a tick on a very private area. What made that adventure worse is that I was good friends with the medic ( we lifted together) who had the "honors" of removing it. I wanted to do it myself, but was not allowed to do so. My Captain actually had to "order" me not to.

This coupled with my phone call today has my mind racing like a kid who just got caught doing something really wrong. My legs are also "out" again, which is rare, as they haven't felt like this since the week I was released from the hospital in April. The joint pain is the same, so is the foot pain, but now I feel like I have pulled muscles again, and they are on fire. Walking up the stairs without pulling myself up with the railing and my arms is almost impossible. Bending is a total adventure also. I can bend, but it hurts like all hell. even as I type this I am totally exhausted, yet can not sleep.

If anyone has any insight, I would appreciate it. As always I thank you for your advice and support. Kirk.

Visit 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.

[Guest guest]

I have already greatly reduced the "physical" end of my job. I am doing more diagnostic work, and less physical stuff. I sit when I feel the need, and leave early when I feel like shit. I took of two days for a school two weeks ago, and took off Monday to take the kids out for a day. The only way I could stop working is to put the place up for sale, and with the economy still being shit to all but the richest of folks, that would be hard to do.

Kirk.

Vent/Rant

I feel like I have fought 14 out of 15 rounds against this disease this year, and in reality have probably only fought two.

I received a call from my rheumatologist today regarding my CT scan I had last Friday. Seems they found something on or in my left kidney and need me to go for an ultrasound to investigate further. I am going next Tuesday. He said he didn't know what it was, and really didn't say much else, aside from asking me how I have been feeling. I told him about my trip to the ER and the mostly every other day headaches and such.

I am getting worn down with this shit! I have been in a great mood considering the pain I am dealing with, but I can feel myself starting to go "numb" with fear and sick of the anxiety. I was afraid of the CT scan, than anxious for the results. Now I am feeling anxiety damn near worse than I was after being diagnosed with this. My mind is racing in a hundred directions at once, and I am getting this strange sense that the majority of my days are behind me. I don't know what can possibly be wrong with my kidney, but can't help but think the worst. Tom Petty has a lyric in a song "Most things I worry about, never happen anyway". I sure hope that rings true. The part that makes me worried is that I had real bad pains four or five years ago on my left side that sent me to the ER . The ER doctor I had needed a major beating as she yelled at me after answering that I had three beers two days prior and that night had eaten cheese steak sandwiches with Jalapeno's and Swiss Cheese. I also told her I drank about 5-6 cans of Iced Tea per day at work. She literally yelled at me "This is what you get for eating hot peppers and drinking beer!". She told me I gave myself an ulcer and sent me home with antacids. I went to my PCP two days later in pain and was sent for an ultrasound, but nothing showed up. No ulcer ever showed up, and my kidneys look ok, I guess.The consensus from my doctors was that it was probably a kidney stone from the iced tea. The pains went away almost as quickly as they came, and I had forgotten about the event.

I get to see my PCP tomorrow, and aside form insisting on better pain killers, and "dying" to know what I am in for. I know I probably won't get that answer, as no one can see into the future. Being of the mechanical mindset, I can accurately tell when an engine or a transmission is on its' way out, (usually way before it "dies") and hope they have the same kind of insight. I already blanked one fishing tournament last weekend, and can already figure I will do the same this weekend as my mind can not stay focused outside of work. I shouldn't even say that as my mind was useless today after the call. I keep trying to be positive, but today nothing I do seems to be working towards that effect.

I also keep getting bombarded by family members (not my wife, thankfully) that insist I have lyme disease. I was tested and the results were negative. They keep telling me that there is another test that is accurate, and that I should seek it out. After reading all that I could about Stills and comparing my lab results to the findings on the International Stills Disease website and hitting the bull's-eye on most (if not all) of them, I am pretty sure my doctors are correct. I do wish it were something "curable" like Lyme disease, but figure if there was a test that was that accurate, every doctor would know about it. This is really amplified after spending all day Monday with a few members of my extended family as we took the day off and took the kids to see than Tank Engine in Strasburg, Pa. I was told that I am nuts for not "seeking" this "magic" test. My cousin is a physical therapist and has a patient who has Lyme but was undiagnosed for twenty + years and he says his symptoms all match mine. I may not be a doctor, but have read a bit about Lyme and don't see all of the symptoms match up as well as he thinks. I am not mad at them, as I do know there are many who care about me( and grateful for it), but I find my mind wanting to tell them to shut the **** up when they get to talking about this. I mean, I wish they were right and all, but it just doesn't add up. I never had the "bulls-eye rash", and I always do a tick check whenever I am outdoors, in the woods and such. This is something I learned in the Army, and have been doing since I found a tick on a very private area. What made that adventure worse is that I was good friends with the medic ( we lifted together) who had the "honors" of removing it. I wanted to do it myself, but was not allowed to do so. My Captain actually had to "order" me not to.

This coupled with my phone call today has my mind racing like a kid who just got caught doing something really wrong. My legs are also "out" again, which is rare, as they haven't felt like this since the week I was released from the hospital in April. The joint pain is the same, so is the foot pain, but now I feel like I have pulled muscles again, and they are on fire. Walking up the stairs without pulling myself up with the railing and my arms is almost impossible. Bending is a total adventure also. I can bend, but it hurts like all hell. even as I type this I am totally exhausted, yet can not sleep.

If anyone has any insight, I would appreciate it. As always I thank you for your advice and support. Kirk.

Visit 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. Visit 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.

[Guest guest]

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. Carmen

[Guest guest]

Dear Kirk,

Please ask your doc to add the Methotrexate to your med mix, as it could be

just the med you need to make it all come together. Also *please* tell your

doc that you need something (at least temporarily) stronger to get you through

the bad pain times.

As for the kidney test...there's a great possibility that it turns out to be nothing.

We all hope that is the case. It is true that 99% of the things we worry about

never happen. "worry is like a rocking chair, keeps you busy but you don't get

anywhere." (I know...easy to say.)

About the Lymes test. If it's available and easy, have it done. Not for you...but

for "them." I have found out over the years that sometimes it's a lot easier to

just "try" something (if it's not too ridiculous) that my friends or relatives suggest,

just to get them off my back.

Once you get the correct "med cocktail" that works just for you, you will feel much

better. In the meantime, you may have to take a few days off of work that you don't

want to, and rest at home more.

Things will get better, believe it or not...they truly will!

from Wisconsin,

Tricia

p.s. your wife sounds like a real gem of a "soulmate."

-- Vent/Rant

I feel like I have fought 14 out of 15 rounds against this disease this year, and in reality have probably only fought two.

I received a call from my rheumatologist today regarding my CT scan I had last Friday. Seems they found something on or in my left kidney and need me to go for an ultrasound to investigate further. I am going next Tuesday. He said he didn't know what it was, and really didn't say much else, aside from asking me how I have been feeling. I told him about my trip to the ER and the mostly every other day headaches and such.

I am getting worn down with this shit! I have been in a great mood considering the pain I am dealing with, but I can feel myself starting to go "numb" with fear and sick of the anxiety. I was afraid of the CT scan, than anxious for the results. Now I am feeling anxiety damn near worse than I was after being diagnosed with this. My mind is racing in a hundred directions at once, and I am getting this strange sense that the majority of my days are behind me. I don't know what can possibly be wrong with my kidney, but can't help but think the worst. Tom Petty has a lyric in a song "Most things I worry about, never happen anyway". I sure hope that rings true. The part that makes me worried is that I had real bad pains four or five years ago on my left side that sent me to the ER . The ER doctor I had needed a major beating as she yelled at me after answering that I had three beers two days prior and that night had eaten cheese steak sandwiches with Jalapeno's and Swiss Cheese. I also told her I drank about 5-6 cans of Iced Tea per day at work. She literally yelled at me "This is what you get for eating hot peppers and drinking beer!". She told me I gave myself an ulcer and sent me home with antacids. I went to my PCP two days later in pain and was sent for an ultrasound, but nothing showed up. No ulcer ever showed up, and my kidneys look ok, I guess.The consensus from my doctors was that it was probably a kidney stone from the iced tea. The pains went away almost as quickly as they came, and I had forgotten about the event.

I get to see my PCP tomorrow, and aside form insisting on better pain killers, and "dying" to know what I am in for. I know I probably won't get that answer, as no one can see into the future. Being of the mechanical mindset, I can accurately tell when an engine or a transmission is on its' way out, (usually way before it "dies") and hope they have the same kind of insight. I already blanked one fishing tournament last weekend, and can already figure I will do the same this weekend as my mind can not stay focused outside of work. I shouldn't even say that as my mind was useless today after the call. I keep trying to be positive, but today nothing I do seems to be working towards that effect.

I also keep getting bombarded by family members (not my wife, thankfully) that insist I have lyme disease. I was tested and the results were negative. They keep telling me that there is another test that is accurate, and that I should seek it out. After reading all that I could about Stills and comparing my lab results to the findings on the International Stills Disease website and hitting the bull's-eye on most (if not all) of them, I am pretty sure my doctors are correct. I do wish it were something "curable" like Lyme disease, but figure if there was a test that was that accurate, every doctor would know about it. This is really amplified after spending all day Monday with a few members of my extended family as we took the day off and took the kids to see than Tank Engine in Strasburg, Pa. I was told that I am nuts for not "seeking" this "magic" test. My cousin is a physical therapist and has a patient who has Lyme but was undiagnosed for twenty + years and he says his symptoms all match mine. I may not be a doctor, but have read a bit about Lyme and don't see all of the symptoms match up as well as he thinks. I am not mad at them, as I do know there are many who care about me( and grateful for it), but I find my mind wanting to tell them to shut the **** up when they get to talking about this. I mean, I wish they were right and all, but it just doesn't add up. I never had the "bulls-eye rash", and I always do a tick check whenever I am outdoors, in the woods and such. This is something I learned in the Army, and have been doing since I found a tick on a very private area. What made that adventure worse is that I was good friends with the medic ( we lifted together) who had the "honors" of removing it. I wanted to do it myself, but was not allowed to do so. My Captain actually had to "order" me not to.

This coupled with my phone call today has my mind racing like a kid who just got caught doing something really wrong. My legs are also "out" again, which is rare, as they haven't felt like this since the week I was released from the hospital in April. The joint pain is the same, so is the foot pain, but now I feel like I have pulled muscles again, and they are on fire. Walking up the stairs without pulling myself up with the railing and my arms is almost impossible. Bending is a total adventure also. I can bend, but it hurts like all hell. even as I type this I am totally exhausted, yet can not sleep.

If anyone has any insight, I would appreciate it. As always I thank you for your advice and support. Kirk.