When Life Gives You Garbage...
Member
Join Date: Oct 2013
Posts: 11,447
Hi Stung;
Just sending you positive thoughts and energy.
Code's suggestion about organizing the information is really helpful
and will give you more control / focus in the situation.
Waiting for appointments suck, but don't Dr. Google while waiting this one as it won't help and tends to give a more negative view than is actually true most of the time.
One thing I did do online before my husband's surgery was to check out reviews of particular Doctors and Hospitals to make the most informed choice I could for selecting players I wanted on my team--
obviously, you don't want them to be "assigned" without your input.
HUGs and please keep us posted.
Just sending you positive thoughts and energy.
Code's suggestion about organizing the information is really helpful
and will give you more control / focus in the situation.
Waiting for appointments suck, but don't Dr. Google while waiting this one as it won't help and tends to give a more negative view than is actually true most of the time.
One thing I did do online before my husband's surgery was to check out reviews of particular Doctors and Hospitals to make the most informed choice I could for selecting players I wanted on my team--
obviously, you don't want them to be "assigned" without your input.
HUGs and please keep us posted.
Member
Join Date: Jul 2014
Location: milwaukee wi
Posts: 3,574
Hi Stung you are with good people here.. scream cry and vent for the Doctor told me along time ago cry Lady Clown and the tears wash the bad stuff out of your body... ppsstt don't let my hubby know about auto ammu stuff he will get that to.. ahhahahaha laugh kiddo laugh for laughter makes the world stop and look at you and think Their Nuts but hey they are happier. then me. love ardy.. you can do it soldier I know it..
Member
Join Date: May 2012
Location: Florida
Posts: 6,784
I'd be pissed too, I won't lie. Vent away & wallow in self-righteousness for a bit..... maybe break some glass or heave some rocks into the ocean..... & then let it go, friend.
You & your family are in my prayers!
You & your family are in my prayers!
Member
Join Date: Aug 2009
Posts: 3,443
Oh Stung,
I'm so sorry. That scenario is my worst and most paranoid fear so I can understand your feelings. One of my kids was diagnosed with T1D this summer and I had (and have) plenty of stages where I am pissed, depressed, overwhelmed (that one is kind of constant, lol), afraid, etc. and that isn't even me that has it. Hang in there through the diagnosis process. We are all sending out so many positive vibes and prayers.
I wish I lived near you. I'd totally take you out for a FU Fate afternoon parachuting jump or something. Parachuting is on my bucket list so I'm always looking for a way to squeeze that in
A million times yes. Things quickly get way to big to manage without some kind of system to keep it all straight.
I'm so sorry. That scenario is my worst and most paranoid fear so I can understand your feelings. One of my kids was diagnosed with T1D this summer and I had (and have) plenty of stages where I am pissed, depressed, overwhelmed (that one is kind of constant, lol), afraid, etc. and that isn't even me that has it. Hang in there through the diagnosis process. We are all sending out so many positive vibes and prayers.
I wish I lived near you. I'd totally take you out for a FU Fate afternoon parachuting jump or something. Parachuting is on my bucket list so I'm always looking for a way to squeeze that in
Originally Posted by CodeJob 
The other thing, tell this person to get something like a Trapper Keeper with multiple pockets. You want this person to collect business cards of every MD, practitioner and nurse you meet, grab all the paper info on whatever they think you have too. This will be your play book. Later you can put those who stay on your care team into your phone.
Member
Join Date: Nov 2008
Posts: 2,582
Hi Stung,
Sorry to hear about that. FWIW, my grandmother (in her 90's now) was dx 20 years ago with leukemia and she is still strong and kicking. I have 2 girlfriends dx 15-20 years ago one with ms and one with lupus and both are really healthy today and don't even take meds. People can manage with those types of illnesses. They all live VERY LOW stress lives now.
Please keep us informed about how you are doing.
Oh, and one other thing, keep a list of all meds you are on including supplements and vitamins on your computer or smartphone. Print a dated copy off before all doctors appts, so you can hand it to them and they always have your latest med/supl/vit list with a date. (I worked in healthcare for a couple years and those lists were super handy for the nurses and doctors).
Hugs
Sorry to hear about that. FWIW, my grandmother (in her 90's now) was dx 20 years ago with leukemia and she is still strong and kicking. I have 2 girlfriends dx 15-20 years ago one with ms and one with lupus and both are really healthy today and don't even take meds. People can manage with those types of illnesses. They all live VERY LOW stress lives now.
Please keep us informed about how you are doing.
Oh, and one other thing, keep a list of all meds you are on including supplements and vitamins on your computer or smartphone. Print a dated copy off before all doctors appts, so you can hand it to them and they always have your latest med/supl/vit list with a date. (I worked in healthcare for a couple years and those lists were super handy for the nurses and doctors).
Hugs
Member
Join Date: Aug 2014
Posts: 2,792
Wow Stung!!
Look at all these post!!! Do you not feel the love, compassion, help, support and everything else through these walls. I am just overwhelmed with all the people praying, offering advice, and giving you HOPE that this TO SHALL PASS!! I know this will be a fight for you but honey, you are a fighter!! You can get through this!! This is just another hurdle that you will have to jump!!
Keep the faith, as you have amazing support from your friends at SR. If your health can be cured by prayers, you would be sitting pretty good!!!
God Bless you and I will keep you in my prayers!!
Look at all these post!!! Do you not feel the love, compassion, help, support and everything else through these walls. I am just overwhelmed with all the people praying, offering advice, and giving you HOPE that this TO SHALL PASS!! I know this will be a fight for you but honey, you are a fighter!! You can get through this!! This is just another hurdle that you will have to jump!!
Keep the faith, as you have amazing support from your friends at SR. If your health can be cured by prayers, you would be sitting pretty good!!!
God Bless you and I will keep you in my prayers!!
Member
Join Date: Aug 2013
Posts: 1,778
Originally Posted by FireSprite
I'd be pissed too, I won't lie. Vent away & wallow in self-righteousness for a bit..... maybe break some glass or heave some rocks into the ocean..... & then let it go, friend.
You & your family are in my prayers!
You & your family are in my prayers!
Sending much love and healing thoughts to you, Stung. xoxox
Member
Thread Starter
Join Date: Dec 2013
Location: Silicon Valley, CA
Posts: 2,066
Thank you everyone.
A lot of my frustration just comes from not knowing what exactly I have going on with me. Codejob, Stanford is close to me and I'm meeting with a hematologist oncologist this coming week. I want to know what the heck is going on. I'm in pain and it's so frustrating because I can't do things that I normally do and I'm usually VERY active and I'm so exhausted that it's difficult to stay frustrated because I'm just so super beyond tired. I only saw my doctor about my symptoms on Monday because I have a recurring fever that settles in every afternoon and then miraculously has vanished by the morning and because I have the worst night sweats imaginable and so much pain in my muscles and joints and nausea and headaches and none of this crap is going away on it's own! My first best case scenario: worst case of PMS/cramps in recorded history. WRONG!!! Then I was hoping it was the flu. WRONG!!! Meningitis? WRONG!!! On Tuesday and Wednesday I had labs and more labs and imaging done to check things out. I have all of the symptoms for AML except that my lymph nodes are swollen too and that's rare and I have internal swelling in my pelvis that showed up on my CT scan and all of my blood work is super wonky. AML is rare in people under 40, I'm about to turn 30. Basically any ****** symptom that you can imagine CAN be a symptom of Lupus too so I really have no idea*. There is definitely something seriously wrong. I wish someone would just give it a name and then give me some directions on what the heck to do about it so I can be a part of the solution.
* I've been studying at the Google School of Medicine for the past week, so obviously I'm an expert in all medicine and totally qualified to self diagnose now [statement is oozing with sarcasm for the sarcasm impaired].
** Fun fact: My sponsor had cancer (and obviously beat it and it's never come back, score one point for her!!) when her kids were similar ages to my kids (her kids are my age now). If I didn't believe in some kind of god I do now. She likes to pretend that she's a doctor like I do too. She is my health scare wing-lady.
A lot of my frustration just comes from not knowing what exactly I have going on with me. Codejob, Stanford is close to me and I'm meeting with a hematologist oncologist this coming week. I want to know what the heck is going on. I'm in pain and it's so frustrating because I can't do things that I normally do and I'm usually VERY active and I'm so exhausted that it's difficult to stay frustrated because I'm just so super beyond tired. I only saw my doctor about my symptoms on Monday because I have a recurring fever that settles in every afternoon and then miraculously has vanished by the morning and because I have the worst night sweats imaginable and so much pain in my muscles and joints and nausea and headaches and none of this crap is going away on it's own! My first best case scenario: worst case of PMS/cramps in recorded history. WRONG!!! Then I was hoping it was the flu. WRONG!!! Meningitis? WRONG!!! On Tuesday and Wednesday I had labs and more labs and imaging done to check things out. I have all of the symptoms for AML except that my lymph nodes are swollen too and that's rare and I have internal swelling in my pelvis that showed up on my CT scan and all of my blood work is super wonky. AML is rare in people under 40, I'm about to turn 30. Basically any ****** symptom that you can imagine CAN be a symptom of Lupus too so I really have no idea*. There is definitely something seriously wrong. I wish someone would just give it a name and then give me some directions on what the heck to do about it so I can be a part of the solution.
* I've been studying at the Google School of Medicine for the past week, so obviously I'm an expert in all medicine and totally qualified to self diagnose now [statement is oozing with sarcasm for the sarcasm impaired].
** Fun fact: My sponsor had cancer (and obviously beat it and it's never come back, score one point for her!!) when her kids were similar ages to my kids (her kids are my age now). If I didn't believe in some kind of god I do now. She likes to pretend that she's a doctor like I do too. She is my health scare wing-lady.
Bunnies!
Join Date: Aug 2012
Location: Florida
Posts: 1,905
You don't have to answer here, but are you having any gut troubles? Autoimmune disorders can be so hard to diagnose because many of the symptoms appear in multiple conditions. I was mis-diagnosed three times before someone finally decided to do a CT scan of my abdomen and my guts lit up like a Christmas tree on the screen. I also have adenomyosis (like endometriosis, but inside of the uterus), and distinguishing between the two can be really difficult. I'm hoping they can find answers for you sooner rather than later. Don't hesitate to get a second opinion if you don't feel that the answer you are given is sufficient. The one thing I've learned in 11 years of being a patient is how to advocate for myself. Yes, this is the one time that controlling codie tendencies can be beneficial. Demand answers and explanations, and don't ever settle if you aren't satisfied with your care. I'm always open to talking if you ever need a sounding board.
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