How about medications to help with some of the pain and fatigue and headaches and all that?
IDK what there is that can help or will push him in the right direction to get me help. I'm so afraid of ending up with someone who wants to play the lets rule out game or call me a nutty drug seeking teenager.
this is a great question. do you have your lab results and doctor's notes from other docs?
you know, maybe it will help if you write down the symptoms you are having trouble with...because Lupus shows itself in different ways for diff folks--
and maybe you can just start out by saying something like, "This is all so new to me; can you tell me what to expect? What to watch out for? what to report back to you?//How can we work as a team against Lupus?"
I don't know if this will help or not. i bet other people will have more ideas.
I remeber my first appointment. Before I went to see her I d to fill out a book about my past, from childhood to now. Every ailment I have ever had and how long it lasteddid doctor gave me to get better. Also all surgeres I have had in the past. Doctor also asked if i have had kids, I told her I had several Miscarriages. Took the book in for first visit,
again she asked more questions about my family. A good doctor and a knowledable LUPUS specalist knows what questions to ask you and what tests to perform. Good Luck, if you lived in Ga I could refer you to mine.
First write down all those questions you are asking us. List them in order so you can check them off as your doctor answers them....even have note book to write answers in ...short notes. That should be fine with any doctor.
Also...what kind of relationship do you want with our doctor? i was also in my teens when i started and back than when you went to rheum doctor....every one else was senior citizen age...they all either stare at me than one would ask what are you doing here!! They say ooh at your age!! But for the most part...since i did have such great doctors in the beginning....they all worked so hard to keep my meds down to few as possible....enable me to keep hiking and working.
So what are the goals in your life...do you want to be able to go off to college? Can they work with you when you come home for breaks and if you should get sick at college take phone calls from you? or emails?
Do you want to help make decisions about what meds you are on and what tests you have or do you want relationship that is more parent /child..where they tell you everything with out any input from you?
I personally have always wanted to be participate type of patient. Also....read up on SLE ..what test are common , drugs etc...Lupus foundation of America lists all that kind of stuff if this one does not, but think it does.
Doctors like patients that are educated about their diseases...list that has been my experience...they do not have to explain as much and can spend the time really getting to heart of why you are there.
One radio doctor use to day....that if you doctor tries to rush you out..you grab their stethoscope and I still have more questions!! lol! it always made me laugh but he was so right..some just go into specialties to make more money and try to rush patients...others really care...so if you feel rush please feel free to say wait i need you to answer more of my questions now.
If you feel you cannot be assertive than ask your mom or dad or sibling, friend to go with you who can be...but get all your questions answered...you feel so much better and not worry so much.
Also...takes about 2 years to get up and downs of the disease and what is the disease what is just being sick like normal healthy people...so give yourself a lot of slack and time to adjust. In fact ...if college plus trying to deal with this is too much just do a community college for few years than do 2 more at reg college...but try and live a life like you are not sick...just like you have always planned.
GOOD LUCK.....sorry you got this...but i have a friend who is doing research in auto immune diseases..and he says even by my lifetime...he thinks they will have maybe not cure..but almost ...he says certainly ways to make life more easy for us! So you should see this easily by time you are in mid 30's...i hope!!
Well my mom goes with me to every appt because i am a minor. It actually went very very well yesterday. He walked in and while waiting for him i decided to take a nap and i was still half asleep so like i would do hoping to get somewhere i was going to have mom catch him up to speed. he told me no. he wanted me to tell him everything because 1 im almost an adult and 2 im the one that experiences everything not her. he did a very through exam saw the butterfly rash on my face sores in my mouth everything. he knows my podiatrist and my rhemy from down at rileys so he's going to be talking to them. He ordered pretty extensive blood tests and lets just say they were all lupus tests both ANA, ESR, C3 C4 all of it. I'm like dang this dudes getting down to business. so im pretty happy with him. he didn't want any of my old paper work because 1 they were 2 years old and 2 he wanted to form his own opinions. I feel confindent i found a good team of drs. and they ACTUALLY work together lol.
Speaking of college...yes i plan to go away like 3 hours north and as for how im going to still deal with my drs or if they can find me good ones by my college or what idk yet. right now im doing everything 1 step at a time and in my world i have 3 more "baby" steps before i get to my next step which is answers and treatment. i go back in a month after my surgery/ biopsy so everyone has the results of all my blood work, biopsy and have talked to eachother.
shoot that reminds me my oncologist things im a crazy teenager blowing some problems with my ankle outta proportion though i didn't want to see him my podiatrist is making me to be safe and he's basically conving drs im a hypocaundriac as well as they lost my papers within 5 mins of me walking out of the office and i can't change because my podiatrist won't allow us to so just grrrrrrr to that note
it sucks that you can't tell that onco (Honkodonko) to take a flying leap! I hate docs who try to make things worse intsead of better. But Im glad things went so well with the other.
Idk if it will help, but when the oncologists tries to push you around visulaize him with his name tag : HonkoDonko, pew h. dung.
sorry that is not very positive---but seriously, he is "not the boss of you" even if he thinks he is. Just go along with what you have to, but remember he's just a guy wearing pants....
yea! go to college....but DO NOT try and work at same time....that is what got me sick every time!! If you really like your doctors....keep them!! You can easily work with them on school breaks and phone calls or emails. You can do blood tests up there if they need them ...or any test and have results sent to them.
As to your podiatrist saying no to requesting new doctor...( i am bit confused of what doc you do not like) It is not his right nor place to say. Have your MOM either speak to Patients advocates at your hospital/clinic all hospitals should have one...just speak to someone in charge over doctors if you need too. This will be great learning experience how to assert yourself and be HEARD!! lol!!
I am so glad that your Rheum did make you speak and not your mom...he is right ...you need to get in habit of learning how to explain...get questions answered etc.
i personally...do not like doctors that what to redo all the test and re diagnose me but than i been at this for about 30 years lol! so thik by now i know.
What are you going to study? Do you know? I am so happy you are going on to college! I kept getting sick trying to work and go at same time.. my parents refused to help and back than their middle class income bumped out of loans etc. So i had to work to pay tuition and live. I wanted to be a Vet so bad all my childhood growing up. But in way, I have got to fulfill it. Most my vets in time have become my friends and let me work on my animals with them. So even though i never got to have my dream come true...in small ways it has.
really really proud...i know how hard it is to stand up to doctors at your age...since i had too and it was hard at times.
SweetShortie2012 said:
Well my mom goes with me to every appt because i am a minor. It actually went very very well yesterday. He walked in and while waiting for him i decided to take a nap and i was still half asleep so like i would do hoping to get somewhere i was going to have mom catch him up to speed. he told me no. he wanted me to tell him everything because 1 im almost an adult and 2 im the one that experiences everything not her. he did a very through exam saw the butterfly rash on my face sores in my mouth everything. he knows my podiatrist and my rhemy from down at rileys so he's going to be talking to them. He ordered pretty extensive blood tests and lets just say they were all lupus tests both ANA, ESR, C3 C4 all of it. I'm like dang this dudes getting down to business. so im pretty happy with him. he didn't want any of my old paper work because 1 they were 2 years old and 2 he wanted to form his own opinions. I feel confindent i found a good team of drs. and they ACTUALLY work together lol.
Speaking of college...yes i plan to go away like 3 hours north and as for how im going to still deal with my drs or if they can find me good ones by my college or what idk yet. right now im doing everything 1 step at a time and in my world i have 3 more "baby" steps before i get to my next step which is answers and treatment. i go back in a month after my surgery/ biopsy so everyone has the results of all my blood work, biopsy and have talked to eachother.
shoot that reminds me my oncologist things im a crazy teenager blowing some problems with my ankle outta proportion though i didn't want to see him my podiatrist is making me to be safe and he's basically conving drs im a hypocaundriac as well as they lost my papers within 5 mins of me walking out of the office and i can't change because my podiatrist won't allow us to so just grrrrrrr to that note
Well i had a pre op on saturday and i saw the partner of the one that made me really upset my visit before * he was saying its all in my head and past drama is the reason for the stuff* that's one of my podiatrists the other one whos really good at what he does n is doing my surgery thursday i nicknamed him jack black cuz that's who he kinda looks like lol the one that made me upset won't let me change oncologists
the oncologist is the one who pretty much called me hypocaundriac whom i have to return too in order to get my results from my biopsy
this week is a 2 days at a time week cuz tuesday is V-day so that should be a happy silly candy hype day thursday is my surgery as well as i get to go to an AWESOME restaraunt with my mom n gma afterwards then saturday is my aunts chinese new years / 4 bday parties and then monday i go back to get my sitches removed and by then it's like within 2 weeks i should have answers from SOMEONE
Now best/worst case scenario the biopsy tells us it's nothing...yeah that's good but it puts us back at what is this thing? I'm really hoping the Rhemy found what he needed in my blood tests and i get somewhere there. its like i want to be on the meds so i can feel better and can function and not struggle so much to stay awake but i'm not looking forward to some of the side effects i see you guys say happen or i know from the short time i was on them
College wise im going for my MBA possibly in international business as well as American sign language interpreter which im looking forward to being able to do and as im doing a paper for school thoughts about Law keep coming in but that's just a maybe
i probably will have to work and go to school at the same time but i don't know how i will react to it i guess it all depends on the treatment regimen im on and what im doing the campus im looking into attending isn't very large and has on campus town houses n apts that you can pay for with tuition * i think* truthfully i don't think college can be any harder than this year is because i'm in mostly college level classes and i should be able to test out of alot of my "freshman" classes
yeahh dealing with drs can be a pain sometimes but the way i look at it it shows me how i DONT want a dr to treat me as well as its just another bump in the road but either way it puts me just a little bit closer
i finally learned why be sad and stressed or anything about it yeahh i have my days when im frusterated with drs or not being able to do everything i wish or days where stuff is just to much but most of the time i try to stay happy help my friends and show my friends that what they go through is nothing so if i can do everything i can and still be strong there's no reason they shouldn't be and most days i give myself a little treat be it my energy drinks ive been drinking to keep me up some candy or even tuesday my schools selling flowers n im buying me one just a little something every day to make me smile it makes a huge difference
You really do have a big week coming up--I love that you are being kind to yourself by doing little things to make you smile everyday.
And I'm glad you are determined to be treated with respect by doctors and other health care people...sometimes it's hard to keep your chin up but it sounds like you are off to a great start.
I will keep you in my prayers and hope you'll keep us posted during the week. oh, here is a little something to start the week the way you wanted to
you know that's kinda funny cuz i was sitting in my math class today playing with white boards *i hadn't seen this yet* and i was writing the word monkey in really silly writing and attempting to draw a monkey so that's kinda funny
Im trying so hard but today was just horrible i woke up feeling like i was hit by a bus i can't raise my arms very high my hands hurt even just typing this it felt like an elephant was standing on my foot all day and my legs were so sore it felt like i had been stuck in the splits and other painful stretches all day :( it ended up being a no stairs kind of day for me which i don't like but to get through the day i would say whos stronger you or me *being my mind or my body* and thinking 3 mins of pain from changing classes or an extra day of lost work and im strong and i CAN make it the few more steps to class its hard sometimes to try to push through it all but i dont want to miss to much school this week since im already missing thursday n we have a 4 day weekend anyway i just wish it didn't hurt so much
at least tomorrows vday and i can have some smiles with flowers and candy
Mary, I hope you have a sweet day tomorrow and not so much pain. I really wish I could take some of that burden off of you---it stinks that a young girl has to suffer like this.
While I was checking my email I put on a playlist of songs and prayers that help me get through the evening hours--because as it says in this song, "evening falls so hard." Anyway, the first song is bridge over troubled water and when I heard it I thought about a guardian angel. They say we all have one, and I believe it's true. So my prayers this evening were that you would hear this song whenever you feel like it's too hard and by the grace of God, that even does odd things like putting chimps on our minds on the same day lol!) ---that this grace, His grace will find you and comfort you. So it's an old video, but the song is so beautiful... http://youtu.be/C-PNun-Pfb4
SweetShortie2012 said:
you know that's kinda funny cuz i was sitting in my math class today playing with white boards *i hadn't seen this yet* and i was writing the word monkey in really silly writing and attempting to draw a monkey so that's kinda funny
Im trying so hard but today was just horrible i woke up feeling like i was hit by a bus i can't raise my arms very high my hands hurt even just typing this it felt like an elephant was standing on my foot all day and my legs were so sore it felt like i had been stuck in the splits and other painful stretches all day :( it ended up being a no stairs kind of day for me which i don't like but to get through the day i would say whos stronger you or me *being my mind or my body* and thinking 3 mins of pain from changing classes or an extra day of lost work and im strong and i CAN make it the few more steps to class its hard sometimes to try to push through it all but i dont want to miss to much school this week since im already missing thursday n we have a 4 day weekend anyway i just wish it didn't hurt so much
at least tomorrows vday and i can have some smiles with flowers and candy
Hi SweetShortie2012, its so good to know things are moving for you now. And as for the oncologist who behaved so inapproapriately, he has egg on his face now eh? You are doing so well considering, its so hard knowing that you might or do have Lupus for anyone. Sometimes the tests that people have for Lupus do come back inconclusive, even the CRP isnt always accurate and often Rheumys go more by how a person is feeling if they have seen them for a long time. My results are usually pretty accurate so i am lucky. I have a friend who has all the symptoms of Lupus, but i think because she also has mental health issues, they are fobbing her off and ignoring alot of what she says. One day she admitted herself to the ER as she was so fed up and in so much pain, then they did find out she had fibromyalgia, but havent yet done the tests for the Lupus, she has classic symptoms though, with the malar rash, it so obvious. Janice is right it does help to write things down, as there are so many different symptoms with Lupus, they change so often. One day i can be feeling alot better than usual, then the next i feel as though i am absolutely shattered and in pain again, it doesnt make sense really does it, but thats the way it goes. We all are very similar but no two Lupus patients are exactly the same, its the things that are affecting you that you need to ask about. Dont worry if you think you sound like a hypochondriac. It took years for me to get a diagnosis, it was only when i change doctors, i actually was so honest and said to him i feel as though i sound like a hypochondriac with all the things that are affecting me. Anyway he was really great and just asked me to list them all and he sat and had a think then said he thought he knew what was wrong with me, after all that time i couldnt believe it, but at least something was getting done for a change, so i do know how you feel. I hope things continue to get better for you. Take care, bye for now, look after yourself, love and hugs Astrid40xoxox
Sorry to change the subject but what do you do about having to work on your feet for 4 hours a day with a Bone Spur? How do you stop the pain? Without sitting down?
