What just happened?
While I am super grateful and reflective tonight on the past two days, I don't know how to say this next thing with out sounding like I am off my rocker. I am pretty damn happy my legs went out on me. You see as a lupus, Chronic etc..patient, you deal with some pretty scary things from time to time, early in your care you freak out about some of this stuff and you go in (seriously you would, some stuff is just scary at times), but then a pattern starts to happen, you are scared, you go in, and you have a chronic illness in an area designed to treat acute illness or injury, however our Chronic is often your acute. I wont drag into this one, but it turns into your least favorite part of medicine, that I can say. So, you end up living with much of this stuff and really feeling less then even sub par, it's kind of like having the flu, but it is just the immune response to the flu, but no flu... but then add in heart issues, Kidney issues, Brain issues, joint issues, on top of that flu feeling, that is when a chronic patient begins to really say, man really? Is this my life, every day for the rest of my life, it's an ugly place. Hey friends of chronic illnesses pay attention to that... don't forget behind that sick person it is your friend fighting to try and still be that friend when she/he can. (AND THANK YOU to my friends that always are that way!) any who back to the main story. So like I said, you learn to just say, "this is it". But then finally all that stuff you knew, your Dr. knew every care giver knew was happening, yet to scared to "touch it" until it breaks, actually BREAKS! Yes!
Que back in legs stop working. IT BROKE!!! I have had this stranger (credit for this word stranger to someone else) but this "Stranger" living in my house that was destroying things, it changed the floorplan's of my house, there were new hiding places, bushes I had not seen on the edges... so a stranger in this new strange place, Yep, that's how it gets. It's awful, it is dark, it is so many emotions... but You BROKE, The walls around the hiding place came down! Helicopters with big lights shining on it! When all that chronic suck that was somewhat preventable of ever being put in a place of breaking, now becomes acute because it BROKE. You walk (or barely walk in LOL) and you what ever you do you don't tell the front desk clerk your broke, shit, that gets you in the ER, and if you ever have a BROKEN immune system, Immune systems are still not what they specialize in (But they do know the number of the person that does). So you tell that kind person greeting you with how can I help you and your start to say I have a mild back ache and have lost a little feeling in my legs: but they really cut you off at mild back..... and have you make sure of address, and billing... but they call the shots at getting you Urgent care, Smile, be nice, don't grimace in pain, you almost have this..... , Whew, they bought it! But no you look around and crap, the flu everywhere in every chair, it's like they all get me, (but they actually have the flu). Wait, I am immune compromised (yep that is how you really treat auto immune, with medicine that really lowers parts of your immune system that is most likely attacking you, you can see for multi system Lupus this gets dangerous, as they are all attacked in a bit different way by different parts of the immune system so you cant really take away everything, so you do your best to keep them suppressed yet not in danger of infection and deal with acute if it happens) But, honestly I cant be around all this flu, so dont go to work with your flu either and get everyone sick, looking around again, what the hell was I thinking coming in here. Mask Quick Mask, hand wipes, sit down the hall on your jacket, just avoid people. .. I don't want to be BROKE and sick, that would double suck. ....
Turning point alert
But back to the good part. I saw a Dr and he knew I was broke! Well to be fair, I showed him 2 legs and 2 feet that did not work, so, I did help. But, honestly, It was awesome, that Dr. in 5 minutes had me figured out, it confirmed enough of the things all the dr.'s already thought yet were to scared (for what ever reason, probably very good reasons , like my personal favorite "DO NO HARM" I appreciate that reason the most, but then there is insurance, ego, etc.. whatever reasons of not treating, it was all just confirmed in 5 minutes? >Really< Get this guy out of Urgent care and get him rotating through Neurology, endocrinology and rheumatology, I am sure some nephrology, cardiology, and hemotology patients would like to see this dr. as well if he can do shit like that in 5 minutes. Even more impressive a neuro who for good reasons (hey I just complimented a Neurologist, Maybe I am sick and broke now as well), but my neuro on this given day (who typically is like 3 plus months to get into, even for simple procedures.) He is training a student and doing more hospital and rounds apparently is able not only see you but can do the one Gold standard test that he believes will support his own beliefs, the beliefs of others and now what the Urgent care doc did in 5 minutes (hey remember I get some credit there, I did give up walking after all) he can do that test right NOW. WHAT???? Test is done, confirms everyone's beliefs, and get this, I started Treatment that night!!!!!! WHAT THE HECK IS WITH THAT! You know for 5-7 years I have been through just about every treatment you can for Lupus, this is the one that was never approved for me, It certainly will NOT fix Lupus, It will NOT put me into remission, it WILL however possibly knock down a few symptoms and I can have like only 5 or 6 things suck most days, and not 10-12. I have never been able to get it, needed this magic diagnosis CIDP caused by LUPUS (of course had the Lupus, was even told CIDP before... but there were still a few hmm flags before treating me and ofcourse more importatly for insurance to approve, although Dr.'s knew I would benefit, but hands tied. But these Dr.'s are tricky LOL Remember how many time I told YOU that I told THEM "my one thing" the golden rule of my care from my side that they were never allowed to do with all this wait and watch and see type scenarios, it was put me in a wheel chair, Yet off and on a few times over the last two days I was in a wheel chair, and I was in a good mood, and loving all my dr.'s. That is sneaky, they put me in and and I was happy! Man, and I thought I did ok at sales presentations... these people, watch out! Anyways, I broke, I am getting exceptional care, I don't know what is next, health is not promised, but in this last game of hide and seek, We found the stranger hiding. Richard's Care team (with my help remember) 1 Lupus 0 (on this round)
Que back in legs stop working. IT BROKE!!! I have had this stranger (credit for this word stranger to someone else) but this "Stranger" living in my house that was destroying things, it changed the floorplan's of my house, there were new hiding places, bushes I had not seen on the edges... so a stranger in this new strange place, Yep, that's how it gets. It's awful, it is dark, it is so many emotions... but You BROKE, The walls around the hiding place came down! Helicopters with big lights shining on it! When all that chronic suck that was somewhat preventable of ever being put in a place of breaking, now becomes acute because it BROKE. You walk (or barely walk in LOL) and you what ever you do you don't tell the front desk clerk your broke, shit, that gets you in the ER, and if you ever have a BROKEN immune system, Immune systems are still not what they specialize in (But they do know the number of the person that does). So you tell that kind person greeting you with how can I help you and your start to say I have a mild back ache and have lost a little feeling in my legs: but they really cut you off at mild back..... and have you make sure of address, and billing... but they call the shots at getting you Urgent care, Smile, be nice, don't grimace in pain, you almost have this..... , Whew, they bought it! But no you look around and crap, the flu everywhere in every chair, it's like they all get me, (but they actually have the flu). Wait, I am immune compromised (yep that is how you really treat auto immune, with medicine that really lowers parts of your immune system that is most likely attacking you, you can see for multi system Lupus this gets dangerous, as they are all attacked in a bit different way by different parts of the immune system so you cant really take away everything, so you do your best to keep them suppressed yet not in danger of infection and deal with acute if it happens) But, honestly I cant be around all this flu, so dont go to work with your flu either and get everyone sick, looking around again, what the hell was I thinking coming in here. Mask Quick Mask, hand wipes, sit down the hall on your jacket, just avoid people. .. I don't want to be BROKE and sick, that would double suck. ....
Turning point alert
But back to the good part. I saw a Dr and he knew I was broke! Well to be fair, I showed him 2 legs and 2 feet that did not work, so, I did help. But, honestly, It was awesome, that Dr. in 5 minutes had me figured out, it confirmed enough of the things all the dr.'s already thought yet were to scared (for what ever reason, probably very good reasons , like my personal favorite "DO NO HARM" I appreciate that reason the most, but then there is insurance, ego, etc.. whatever reasons of not treating, it was all just confirmed in 5 minutes? >Really< Get this guy out of Urgent care and get him rotating through Neurology, endocrinology and rheumatology, I am sure some nephrology, cardiology, and hemotology patients would like to see this dr. as well if he can do shit like that in 5 minutes. Even more impressive a neuro who for good reasons (hey I just complimented a Neurologist, Maybe I am sick and broke now as well), but my neuro on this given day (who typically is like 3 plus months to get into, even for simple procedures.) He is training a student and doing more hospital and rounds apparently is able not only see you but can do the one Gold standard test that he believes will support his own beliefs, the beliefs of others and now what the Urgent care doc did in 5 minutes (hey remember I get some credit there, I did give up walking after all) he can do that test right NOW. WHAT???? Test is done, confirms everyone's beliefs, and get this, I started Treatment that night!!!!!! WHAT THE HECK IS WITH THAT! You know for 5-7 years I have been through just about every treatment you can for Lupus, this is the one that was never approved for me, It certainly will NOT fix Lupus, It will NOT put me into remission, it WILL however possibly knock down a few symptoms and I can have like only 5 or 6 things suck most days, and not 10-12. I have never been able to get it, needed this magic diagnosis CIDP caused by LUPUS (of course had the Lupus, was even told CIDP before... but there were still a few hmm flags before treating me and ofcourse more importatly for insurance to approve, although Dr.'s knew I would benefit, but hands tied. But these Dr.'s are tricky LOL Remember how many time I told YOU that I told THEM "my one thing" the golden rule of my care from my side that they were never allowed to do with all this wait and watch and see type scenarios, it was put me in a wheel chair, Yet off and on a few times over the last two days I was in a wheel chair, and I was in a good mood, and loving all my dr.'s. That is sneaky, they put me in and and I was happy! Man, and I thought I did ok at sales presentations... these people, watch out! Anyways, I broke, I am getting exceptional care, I don't know what is next, health is not promised, but in this last game of hide and seek, We found the stranger hiding. Richard's Care team (with my help remember) 1 Lupus 0 (on this round)
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