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View Full Version : "It's not Lupus" ..... Quoting Dr House



Linda From Australia
06-29-2011, 01:06 PM
I have never seen these episodes that people often tell me about. Bu apparently it really isn't Lupus.

I thought I had better let people know why I have disappeared for a while and to explain why I will be gone for quite a while.

My GP and Rheumy believe that there is something else wrong with me unrelated to Lupus. So I am being poked, prodded, injected, sucked out, you name it, I am having it done to me. My GP is convinced something serious is wrong with me, but I keep telling her that as soon as my feet and hip get steroids shots, I can do more exercise, build up my strength, build up my muscles, sleep better, put on weight, and start to become 'me' again.

As many of you know I am a very positive person, always willing to make people who feel bad about a situation have a laugh. I am heavily into trying to be physically, emotionally, and spiritually healthy. But with my rapidly failing health, I must admit, my life is being sucked out of me. I am walking around in a trans most of the time, not able to function. I am struggling trying to complete the end of term. School breaks up at the end of next week and I am busy trying to grade papers, and write reports. Which is so difficult when I cannot think straight.

My current situation is: C .... R ..... A ..... P !!!!!!!!


My muscles are fast wasting away. I could swim up to 15 mins in the pool and stop only because I didn't want to do too much. I cannot eve swim 1/3 of the pool now.
My upper strength has gone from me. At times I cannot even carry a cup full of hot water to my classroom.
I cannot stand for more than 30 seconds
I am waking up every hour, and probably not even sleeping for half of that hour
I have no idea what I am supposed to teach, I have a note book with me at all times to remind me of what I am supposed to do. But fortunately I think I am still teaching reasonably OK
I mix up the kids grades, and then have to check and recheck them
OK OK, so there is a lot of brain fog happening, you can only have to imagine what it is like for me
My joints are so sore - and it really isn't Lupus, that is why the DRs are so worried
I am still loosing weight.


On a positive note, I have had one steroid injection in my left foot, the right will be done on Friday. Unfortunately, I found out today that it will take 3 - 7 days before I will feel different. But my GP said that she is pretty sure that it won't make any difference because there is something wrong with me. On top of everything, I keep loosing my balance, more than ever

Anyway, you get the idea, it is 3:51am, and I have bee awake for a couple of hours, and I need to leave home at 7pm to drive to the hospital to get this whole body scan done.

Oh and I said to the ultrasound doctor when he gave me the steroid injection that I thought the injection in my foot would be painful, and he said it usually is, but with the amount of pain I am in, I wouldn't have felt it. Gee that was comforting.

Usually when I am having a bad time pain wise, or health wise, I usually deal with it in a positive way, and really appreciate the little things in life and enjoy myself. I put on my happy mask and therefore ... I become happy. But I found myself a few weeks ago becoming agitated, and it was reflected in some of my posts. You probably wouldn't have even noticed it, but I know when my posts started to change. So I decided to stay way from WHL until I started feeling better physically and mentally. I noticed a few people mentioning that they wished 'Linda was here to make us laugh" Sorry guys, Happy Linda is no where to be seen for the distant future.

I am really snowed under at school and I am trying to get the reports completed, My school is very supportive of me, and has made so many accommodations. But if I don't get the reports finished, I still have to do them during the holidays, and I am going interstate for a work conference for a week when school closes. I would like to actually have a few days holiday before coming back home and starting the whole planning for the next term nightmare. It isn't going to be easy for me especially if I keep deteriorating, and the doctors haven't found out what is wrong with me.

I will check in from time to time, but I won't be posting anything for a long time. Sorry guys, but I cannot risk saying inappropriate things, you are all so special to me and you have no idea how happy you make me feel. Bye for now, look after yourselves, live a very healthy lifestyle, and what ever you do, don't let that mask slip... keep it glued on with super glue.

chikititalinda
06-29-2011, 01:14 PM
Oh Linda I'm so sorry you're going through all of this. I hope your doctors can get to the bottom of what's going with your health and make you better real quick!

tgal
06-29-2011, 01:14 PM
I have never seen these episodes that people often tell me about. Bu apparently it really isn't Lupus.

I thought I had better let people know why I have disappeared for a while and to explain why I will be gone for quite a while.

My GP and Rheumy believe that there is something else wrong with me unrelated to Lupus. So I am being poked, prodded, injected, sucked out, you name it, I am having it done to me. My GP is convinced something serious is wrong with me, but I keep telling her that as soon as my feet and hip get steroids shots, I can do more exercise, build up my strength, build up my muscles, sleep better, put on weight, and start to become 'me' again.

As many of you know I am a very positive person, always willing to make people who feel bad about a situation have a laugh. I am heavily into trying to be physically, emotionally, and spiritually healthy. But with my rapidly failing health, I must admit, my life is being sucked out of me. I am walking around in a trans most of the time, not able to function. I am struggling trying to complete the end of term. School breaks up at the end of next week and I am busy trying to grade papers, and write reports. Which is so difficult when I cannot think straight.

My current situation is: C .... R ..... A ..... P !!!!!!!!


My muscles are fast wasting away. I could swim up to 15 mins in the pool and stop only because I didn't want to do too much. I cannot eve swim 1/3 of the pool now.
My upper strength has gone from me. At times I cannot even carry a cup full of hot water to my classroom.
I cannot stand for more than 30 seconds
I am waking up every hour, and probably not even sleeping for half of that hour
I have no idea what I am supposed to teach, I have a note book with me at all times to remind me of what I am supposed to do. But fortunately I think I am still teaching reasonably OK
I mix up the kids grades, and then have to check and recheck them
OK OK, so there is a lot of brain fog happening, you can only have to imagine what it is like for me
My joints are so sore - and it really isn't Lupus, that is why the DRs are so worried
I am still loosing weight.


On a positive note, I have had one steroid injection in my left foot, the right will be done on Friday. Unfortunately, I found out today that it will take 3 - 7 days before I will feel different. But my GP said that she is pretty sure that it won't make any difference because there is something wrong with me. On top of everything, I keep loosing my balance, more than ever

Anyway, you get the idea, it is 3:51am, and I have bee awake for a couple of hours, and I need to leave home at 7pm to drive to the hospital to get this whole body scan done.

Oh and I said to the ultrasound doctor when he gave me the steroid injection that I thought the injection in my foot would be painful, and he said it usually is, but with the amount of pain I am in, I wouldn't have felt it. Gee that was comforting.

Usually when I am having a bad time pain wise, or health wise, I usually deal with it in a positive way, and really appreciate the little things in life and enjoy myself. I put on my happy mask and therefore ... I become happy. But I found myself a few weeks ago becoming agitated, and it was reflected in some of my posts. You probably wouldn't have even noticed it, but I know when my posts started to change. So I decided to stay way from WHL until I started feeling better physically and mentally. I noticed a few people mentioning that they wished 'Linda was here to make us laugh" Sorry guys, Happy Linda is no where to be seen for the distant future.

I am really snowed under at school and I am trying to get the reports completed, My school is very supportive of me, and has made so many accommodations. But if I don't get the reports finished, I still have to do them during the holidays, and I am going interstate for a work conference for a week when school closes. I would like to actually have a few days holiday before coming back home and starting the whole planning for the next term nightmare. It isn't going to be easy for me especially if I keep deteriorating, and the doctors haven't found out what is wrong with me.

I will check in from time to time, but I won't be posting anything for a long time. Sorry guys, but I cannot risk saying inappropriate things, you are all so special to me and you have no idea how happy you make me feel. Bye for now, look after yourselves, live a very healthy lifestyle, and what ever you do, don't let that mask slip... keep it glued on with super glue.

Hey Linda. I am really glad that you finally decided to come out publicly with what is going on with you. Everyone here loves you and I know they are appreciate finally being able to be of some support. I understand why you are saying what you do but please think about one thing... If there is any place that people understand how we feel on those bad days, how easy it is to get irritated because there is so much going on in our own life that our mouth overrides our a** sometimes it is here. I am worried that if you isolate now things will just get emotionally worse for you but it is your call.

As always I am here for you and I love you. Let me know if you need me (even in the middle of the night/during your daytime)

lovedbyHim
06-29-2011, 01:43 PM
Oh Linda what would I want people to say if I knew everything was turning to crap? I think I would want them to say, hold on to your faith, live today to the fullest and anytime you need a shoulder to cry on or to pick you up with some twisted humor, you know where to find me. I haven't known you for long but I have to tell you I am forever blessed having what time I've had with Linda from Australia! I love you and know we will actually meet someday. Xxo Tammy

magistramarla
06-29-2011, 02:03 PM
Linda,
I am so sorry that you are going through so much with your health. As others have said, I wish that you would reconsider about isolating yourself. We all understand the frustrations of dealing with the medical community and we would all be willing to support you when you need to vent. Think about it, and please keep us informed of what is happening.
I know very well what a stress the end of the term is. Our school always stocked lots of chocolate for the teachers during that awful exam/turn in the grades week. Hang in there and then enjoy your vacation, girl!
We'll miss you around here, so jump back in when you can.
Lots of Hugs,
Marla

Gizmo
06-29-2011, 04:08 PM
Linda, I've missed your posts because you always put a positive spin on things. I sure wish you would stick around so that we can support you the way you have supported so many. I don't think anyone here cares if you've got lupus, or foot in mouth disease, or spotted dick (Oh wait, that's a food, not a disease - sorry). What we care about is YOU. I personally hope that you will share with us what the doctors are finding, how you are holding up, and what treatments you are undergoing. As I said to Steve earlier today, you give people a gift when you allow them to care for you and return the love that you have shown. If you aren't up to posting, please keep in touch with someone who can share your progress with us. I will be thinking of you.

Peridot20_Gem
06-29-2011, 04:49 PM
Well Linda it's deeply shocked me mate and your such a special person and will be missed dearly while your unable to come on...as that laughable inspiration is such a beautiful quality you hold.

I really hope from the bottom of my heart they can find out what's going on with you, with things progressing so quickly and thank you for coming on and stating what's actually going on with you but please when your able to let we know what's happening and if any progress is being made.

Your loved deeply and we'll be missing you such alot.

(((Hugs))) Terry xxxx

steve.b
06-29-2011, 06:28 PM
you know my phone number.....

USE IT

even if it is 4;00am like when you wrote this post... use it

Manderson
06-29-2011, 07:15 PM
Best wishes Linda. I sincerely hope that things work out.

giggle
06-29-2011, 09:38 PM
I posted a whole thing and it just disappeared! : (

But the gist of it was... DONT GO LINDA! Not for us, not for our sake... because we would have you stay here! We want to be the supportive friends you need right now and we dont mind if you arent at your funniest, happiest... we take the good with the bad : ) But if you need to leave for you, for your health and wellbeing... then we will wish you the best and hope you know when you need us, we are here for you!

"I'm selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can't handle me at my worst, then you sure as hell don't deserve me at my best."
— Marilyn Monroe

And Linda, if we can't handle you at your worst... then we sure as hell dont deserve you at your best : )

BonusMom
06-29-2011, 09:56 PM
Linda-

I'm gad you checked in as I was beginning to get a bit concerned as you are a regular poster.

I am very, very sorry that the muscular weakness is persisting and the joint pain is bothersome, I am, however, very relieved, that you are getting additional testing done. I do hope that you are able to get some much needed vacation time once the term is over.

Please rest as much as possible and update us when you can.

Linda From Australia
06-29-2011, 10:25 PM
Hey guys I am not leaving ....
I am just trying to get my reports finished by early next week, then I am off to another state for the week for a work conference. The only vacation time I have is a couple of days. I will be back posting on WHL, when my busy life is settled down a bit. I am sorry if some of you got the wrong impression. Or perhaps it was the way I posted the message, perhaps I wasn't very clear.

Thank you so much for your kind thoughts, I really appreciate it. I will not isolate myself, I have my family and friends, along with my work colleagues. And while I am away I have the people who care for me every day, my work colleagues helping me out, and of course my husband. So I will not be isolated. I really need you guys especially at the moment while I am being tortured physically by the medical establishment.

So here is an update.

I still have Lupus, but it isn't active
This morning when I weighed myself, I have lost another 1kg in a week
I had a whole body bone scan this morning, they found early arthritis in my hips, worse on my left hip
There is no sinister abnormalities, or cancer visible
The doctor at the hospital told me to keep pushing for more tests because of the weight loss


When I dropped off the report from the body scan to my GP, the receptionist said my doctor was talking to her after I left yesterday and the GP said she is determined to find out what is wrong with me. I had my first steroid injection in my left foot yesterday, it didn't hurt at all. But afterwards and today OUCH!!!!! it is so sore. I have my right foot steroid injection tomorrow, so hopefully by Monday my feet should be feeling a bit better

OK, so something funny .... just to reassure you that I haven't totally lost the plot.
The scans was in quite a few sections. I had an hour and a half break between one of the scans, so I went out to meet my daughter for morning tea and when I came back to the hospital, the parking was atrocious. So I was 10 minutes late and the next scan was about me sitting on a stool with my arms on a flat surface sandbagged down. It was so painful being stuck to the surface for 20 minutes without moving, so when the radiographer told me she was finished with that scan I asked her if that is how she always punishes her late patients. She laughed and said only me. Then, she strapped me down from head to foot to a narrow bed. More punishment for the late patient! I told her as a teacher, I am only used to punishing people, I am not used to being punished.

ha ha, no not really funny but that is all I can come up with at the moment.
Thank you again for your kind words, I want you to know how much I appreciate all of you. I just have to get all these reports finished, and then I have to start planning for next term. I PROMISE I will check in every now and then.

lovedbyHim
06-29-2011, 10:34 PM
Oh Linda you rock my world! So glad to know you will keep in touch. I love ya much! Tammy

Linda From Australia
06-29-2011, 10:57 PM
OH AND I forgot to say, I have been put on a pain diary for a couple of weeks. I HATE doing pain diaries because it means that I have to focus on the pain throughout the day, and it seems to make it feel worse. I usually just try to distract myself, and I can't seem to give a rating. So I have no idea what a 3 or a 5 or even a 10 is. But I am doing it anyway, and forcing myself to focus on my pain. GEE what a pain it is, literally !!!

They found muscle enzymes in my blood work, but not much. There is one test to come back, I can't remember which one. I am seeing my GP in a week, then I am off to the conference. After I come back I will be seeing the specialist so he will order some tests I suppose

Peridot20_Gem
06-30-2011, 05:14 AM
Oh Linda,

Nice to hear you ah leaving we in the sense for a while...you made your post sound like you was'nt going to be with us for abit so you must be anyhow, as your ususally on the ball with your posts and even better when that lovely wit kicks in.

I just hope they manage to find out what's causing the weight loss mate.

All my love Terry xxx

Dance in the Rain
06-30-2011, 05:19 AM
I hope all these test help you find the answers soon so you can turn this around. So sorry this is happening to to.

rob
06-30-2011, 05:55 AM
WHL is a better place with you in it Linda. I'm glad you are not leaving. I wish things were better for you, I hope they get better soon.

Rob

Corella
06-30-2011, 06:07 AM
I hope they find out what is wrong Linda, and dont forget when you are up to it, we should meet for coffee - you have a fabulous sense of humour, I think I could see you writing your own book - and I would buy it for sure, you do make everyone laugh.

mrstjscott
07-01-2011, 05:41 AM
Oh Linda from Australia. I woke up this morning in so much pain, but when I read your post, my tears dried for me and shed for you. I am so sorry that you are going through this
C R A P P Y time right now. Although I don't post much, when I have, you have been such a great means of understanding and support. I feel like I have already met you in person so I can't imagine how long I would hug you if we really met. Linda, please don't isolate. You are entitled to post things that are NOT happy, supportive of others, or funny. You are not only to give support, but you are to receive support and right now I offer my support to you. Wanna hear something funny? A man was driving late one night, after having smoked some marijuana. As he was driving, he kept trying to dodge some trees in the middle of the road. A little bit later, he realized that he was actually dodging a large AIR FRESHENER hanging from his rear-view mirror. Hahahahahahaha. Ok. So Linda from Australia, please keep us posted and we love you. GOD BLESS YOU!!!

Nonna
07-02-2011, 06:56 PM
Linda, been having a rough time myself. Am glad you'll hang around. Just take it one day at a time and do the best you can thanks for updating us. You meN a lot to all of us

slim
07-03-2011, 12:46 AM
Linda i am so sorry you are going through so much with your health but i totally understand what you mean about not posting and wanting to be alone when your world is turning up side down and not having the energy to put on a face for the world . Im guilty of it, you have a great support group here that will be here whenver you r ready to comeback. Get better and its okay to leave the glue at home sometimes. hugs and best wishes slim

Linda From Australia
07-03-2011, 02:38 AM
AN UPDATE....
I am still here, but I am just pretty busy writing up school reports before the kids break up for their 2 week winter holiday in 4 days time.

After months of waking up every hour, and not sleeping for the full hour, last Thursday I actually slept for 6 solid hours, Friday night: 3 hours, Last night Saturday: I slept for 2 hours. I really feel a bit more rejuvenated after having a bit better sleep. Isn't it funny how you get used to the lack of sleep.

I have been trying to keep off my feet as much as possible to help the very first ever steroid injections to work on my feet for bursitis and Morton's Neuroma. They are still a bit sore, but no where near what they were before the injections. I will find out how successful the injections were when I come home from teaching all day tomorrow. I am really hoping that the improvement in the amount of pain in my feet will help with my ability to walk a bit better, which will hopefully put less stress on my newly diagnosed arthritis in my hips, my left hip being worse than my right hip.

I am still struggling to keep weight on, I lost 1kg last week, so I am trying to eat every 2 hours, regardless if I feel hungry or not. Most of the time I don't feel hungry though. I am also trying to eat high calorie food. I cannot believe last year, 16kg heavier, and no matter what I did, I just couldn't loose any weight. Now, I am so immobile, I cannot keep the weight on. That is why the doctors are so worried about me, and keep my bank account empty as they do test after test to find out why.

I have also been feeling quite nauseated the last few weeks. It starts late in the afternoon and doesn't leave until late in the morning the next day. I have no idea why, I thought it might be because of the increase in Plaquenil, but I feel nauseated hours before I even take the medication. Perhaps because I am not sleeping could be a contributing factor. When I see my GP in a week's time, I might ask her to organise an endoscopy, last year I had the tube shoved up and down me, and all they found was diverticular disease. They probably won't find anything, but I need to support the doctor's vacation fund somehow.

Many people have suggested that I may have Polymyositis, or myositis. I have checked out these diseases, and I don't have the associated voice, throat, or breathing issues. The doctors have suggested a number of things, but I keep telling them if they can help to get my feet and hip pains under control, I can exercise more effectively, be able to build up my muscles, strength and I will be able to sleep better. Then I won't have the muscle and weight problems I have at the moment resulting in having more energy to do what I do best, live life to the fullest.

Thank you everyone for your caring messages, I am feeling so much better emotionally after having a couple of extra hours sleep. If I can sleep at least 8 hours every night, I will be super woman. So I will just settle for being a super tired woman for now, instead of super exhausted woman. I just need enough energy to finish these school reports. OH BOY ... I just found out that I forgot to assess the kids reading. FLIP, and double FLIP, I have some heavy work to do now.

steve.b
07-03-2011, 03:56 AM
the few people i know that have had a "one of" steroid shot.
complained it did nothing but heart for the first 2 days.
the pain deminished on day 2 or 3, or did not work at all.
hopefully it will work for you.

cherie still is pain free in her back, 6 weeks after her steroid shot...

Gizmo
07-03-2011, 06:01 AM
Linda, so happy to see your post this beautiful Sunday morning. Sleep is HUGELY important and lack there of can do all sorts of nasty things to our bodies. My daughter takes Tramadol before bed. It helps with pain and deep sleep.

IMHO getting your pain under control isn't going to be the magic bullet to your muscle mass loss and weight loss. Most people gain weight when they have to cut back on their exercise. They've even done studies that show a link between obesity and not getting enough sleep. I'm not trying to be downer, I am just concerned that you might be tempted to stop your search for answers when your pain has decreased and you are able to exercise more.

Good luck with your grading. Teachers are some of the hardest working people I know. I worked in public schools for 10 years and really learned to appreciate how much they sacrifice family and personal time for the kids.

Linda From Australia
07-03-2011, 06:38 AM
Thanks Gizmo for your kind words, even though it has the potential to allow me to see through my disillusions. You remind me of myself. Some students study so hard to get high marks, but it doesn’t matter how hard they study, they just cannot get the grades. Basically, sadly, these kids just don’t have it.

This is why I am saying if my pain gets under control, I can exercise more, sleep more, walk more, therefore, I should be a lot healthier, maintain my weight, and build up my muscles. I figure that because of the level of pain I have been in, and the lack of sleep, I think my body is becoming depressed, and has stopped functioning properly. This is like the kid who studies so much, yet still gets low marks. Like you say, if my pain is sorted, I will still have the weight problem.

The reason why I am so positive that my health decline is related to my pain and lack of sleep is because I want to prove all the doctors wrong. You see I am sick and tired of all the doctors telling, or should I say, demanding that I have some sort of cancer. They prick me, prod me, test me, retest me, scan me, and rescan me, and still say, you must have some sort of cancer, though all the tests keep coming up negative. I keep telling them that all I need to do is to be able to get the pain under control so I can exercise and get on with my life. I am not in denial, I just want to prove them wrong, and allow them to go on the expensive holidays I have paid for them.

If eventually I am unlucky to find out that I have cancer, then I will again be on the pursuit to prove them wrong again, by telling them all I need to do is to be able to control my pain and sleep so I can exercise and not die! When I was studying psychology at university, I asked my lecturer how can I get a grade better than C. She told me “Linda you will always be a C student”. I stormed out of her office and was determined to prove her wrong. A couple of years later she was surprised to see me still studying some psychology units. She asked me how I was going. I was happy to announce to her that I was getting A grades. When I walked away, I couldn’t help but poke my tongue out at her, she didn’t see me though, because it was only in my imagination.

I am a fighter, I will fight for my health, I will do whatever I can do to be healthy. If the doctors want to use me like a voodoo doll, I will let them. But if they prove me wrong and tell me that I am cursed with cancer, or some other horrible disease worse than Lupus, then I have a new challenge to face. Doctors are always looking for people to help them with their leisure activities. Perhaps I can help them to put their kids through private school and university. Gee I am one generous patient, agreeing to all those unnecessary and expensive tests. This is why I need to continue to teach full time, because I have so many people to support, apart from my own family.

Peridot20_Gem
07-03-2011, 06:39 AM
Linda,

I just hope the injections help your feet and that we'll still have that cheeky wit on the site but you'll get your head around the paper's for the kids as i know you love that job so much.

Linda our posts went up together..you are a fighter mate and if you get past one hurdle then you'll do another and we all get down at times but keep fighting mate.

Hugzzzzzzz you way linda xxx

bunny28
07-07-2011, 06:33 PM
Linda I am so sorry you are going through so much. I hope that you will get a bit of break from work now (are you on a school year break after this semester like we are or would it be just rolling into a new term?) Anyway, it sounds like a break might help you and the doctors to focus on finding answers. I will be thinking good thoughts. Please take care and thanks for helping me feel welcome here with your positive outlook and friendly support. I only hope I am able to return the favour now and then.

Gizmo
07-07-2011, 07:45 PM
Linda, I just saw this post. I haven't been hanging around as much with my daughter's wedding looming ever closer. Plus, Mari got me hooked on Words With Friends and now I don't have time for anything LOL.

I didn't realize that the doctors are suspecting cancer. I thought they were looking for something more neurological. I just noticed that you haven't been diagnosed with SLE for very long, either. What a sucky year for you! I don't blame you for being angry, you have a lot to be angry about. It's reassuring to see that you are turning that anger to your advantage and fighting for your health every step of the way. I don't believe that "Everything happens for a reason," but I do believe that it is possible to create something good out of crap. Do you get "Myth Busters" on TV in Australia? There was an episode where they were testing the veracity of the saying "You can't polish a turd." They proved that in fact, you can make a very shiny ball out of a pile of s*#t. You remind me of that - you are polishing the pile of poo that you are currently dealing with and I'd bet money that you'll be able to see yourself laughing in the reflection when all is said and done. (My apologies to anyone who is offended, but some things just have to be said).

You are an incredibly strong woman, Linda, and you inspire me. Now I think of you when I don't want to exercise and say if Linda can keep at it, so can I. I hope you find some relief for your sleep problems and your pain. Lack of sleep and pain do seem to be very good "bedfellows." I'm glad to see that you are still posting and I know there are many of us who want you to stay with us as you go through this ordeal. Sending a hug.

Peridot20_Gem
07-11-2011, 03:19 PM
Hi Linda,

I still hope your resting well and keeping off your feet as much as possible but the hip pains can be terrible.

Thinking of you dearly Linda xxxxx