PDA

View Full Version : Doctor's appointment/ Way too sensitive



tgal
04-08-2011, 12:39 AM
Maybe I am just too sensitive because of this last flare or maybe it is because it was 1 year ago today (yesterday since it is almost 2AM) that I was hauled out of my office in an ambulance because I had a major seizure while trying to fax a document. It didn't occur to me that I would never again return to my office as an employee.

Anyway I was at the doctors office today. The new doctor that finally listened to me and put names to all the things that all of the other doctor's refused to name.SLE with secondary seizures,TN face pain, vasculitis, raynauds and the newest of the bunch is angina due to the vessels getting inflamed and causing spasms. There are more but you get the picture. I went into the office because I have been flaring pretty bad this last week and my upping my steroids on my own wasn't helping (Please do not try this at home LOL). I got into the office and we began to talk. My hand spasms were bad today, my joint yada yada so the first thing he did was give me a big shot of steroids and he upped my steroids for the next two weeks to see if that would help.

While we were chatting I told him that I got my disability and he high five'd me (LOL). We were discussing that it would be about 13 more months before I can have my medicare so no insurance but thank goodness we were going to have more than $300 a month to live on. I said to him in all honesty "The goal is for me to never have to use the medicare. Now that we have some money I want to get this all under control so I can go back to work and to a more normal life". He was writing scripts as I said this and I saw him look at me out of the corner of his eye but said nothing. (I have known this doctor since I was about 15 and, although I hadn't been to him in 20 years we are usually very honest in our dealing). When I saw that look I kind of chuckled and said "I am telling the truth! I know this most likely won't go away but I want to get this under control so I can just have a normal life again. He never looked up when he spoke this time and all he said was "It is good to have goals". WOW. I think that hurt me more than if he said I was dying. It was so formal and you could hear in his words that the one thing that I had been refusing to accept. The one thing that wouldn't even allow to cross my mind.

I know that I have a lot of the more serious effects of SLE. It is affecting my brain and the vessels to my heart but I kept waiting to get disability (which was a year long fight) so I could start trying to stop this instead of just manage the effects. "It is good to have goals" said that if we can get them under control it will most likely be longer than a year and possibly never. Understand that I am NOT giving up nor am I going to spend all of my time upset about this but about 1AM I allowed myself to start crying and haven't been able to stop to stop since.( I did allow myself to go out in the middle of the night to get a coke from Jack in the box since even the new sleep meds haven't done anything to counteract this steroid rush)

I know this was a long rant but I had to say it somewhere and get it out of me. I don't want to discuss it with my daughter or niece because it really is kind of stupid. He didn't say anything that changes anything. I should have known that it was going to take longer but I refuse to give up trying. I will not allow this disease to take my hope away. If I do that then it has won and I will not allow that to happen.

craftkeeper
04-08-2011, 03:26 AM
Oh mari, i am so sorry that you went through this and have been so upset. Doctors look to the medical and scientific side of everything. For most, that's all they know. But as we all know by now, they dont know everything..Just by reading your post i can tell that you are a strong woman, with a good atititude and will keep heading towards your goals though. You just keep on keeping on girl. Big Hugs.

Nonna
04-08-2011, 03:33 AM
Mari, remember how we all talked about making adjustments and changes to our lives? I think you've reached that point; you need to evaluate what you want out of life, what you are able to get out of life.....

Look at your goals, what is achievable and what is not. Change directions if necessary. Going back to a normal life does not exactly mean returning to the old. We have to find a new normal life.

You are so important to all of us, you could lead a support group very effectively, if your hope is to work again you could look in that direction. Change and adjustments are what it is about. NEW DIRECTIONS. No I don't think you were being over sensative, he was telling you you can't go back, but you can go forward and change directions.

Toni

tgal
04-08-2011, 03:41 AM
Mari, remember how we all talked about making adjustments and changes to our lives? I think you've reached that point; you need to evaluate what you want out of life, what you are able to get out of life.....

Look at your goals, what is achievable and what is not. Change directions if necessary. Going back to a normal life does not exactly mean returning to the old. We have to find a new normal life.

You are so important to all of us, you could lead a support group very effectively, if your hope is to work again you could look in that direction. Change and adjustments are what it is about. NEW DIRECTIONS. No I don't think you were being over sensative, he was telling you you can't go back, but you can go forward and change directions.

Toni

Chuckles as you give my advice to others back to me. You are absolutely right, Nonna. You are right.

Nonna
04-08-2011, 03:47 AM
You just needed to hear it from someone else. You knew in your heart, that's why you picked it up from him

hugs my fellow single mom

Toradoradi
04-08-2011, 03:55 AM
Mari,
I'm so sorry you have had such an upsetting doctor visit. Doctors look at what they think to be truth based on medical fact. They are there to tell you the facts and medical information based on what they see on a chart in front of them. They don't take into account a patients ambitions, hopes and will into account though. And those count for so much of the way we are able to get through this and live our lives.

tgal
04-08-2011, 04:13 AM
Thanks to all of you who took the time to read my middle of the night ramblings! I am much better now. I think that it being the anniversary of not working and then only getting 3 hours of sleep in the last 48 hours were taking their toll on me! I know it is going to be OK. Heck, we just lived on $300 a month for more than 9 months! If we could make it through that then there is nothing that we can't do!

Hugs to all of you for being so helpful

~LUVMYFLOWERS~
04-08-2011, 04:41 AM
Hi Marri,
So sorry to hear about you'r upsetting dr's appt. I can honestly say that my pcp dr's appt was very simular to yours. After 8 years of specialest and test when i finaly got diagnosed with sle lupus,sjogrens, ryanuads and cns vasculitis, and scleroderma , I also went back to my pcp of 26yrs that ive been seeing him and to get my med's filled and he ask if the dr's had figured out what i had yet what i had and he was writeing my script's and asking questions, And when
i told him the list of diseases then told him that dr's think sjogrens had gone to my brain causeing cns vasculitis, He looked up at me throuhg his glasses and his eyes turned red and he started crying and wipeing tears from his eyes! Then at that moment i knew what i had was very bad and deadly and i told him if you start crying then your gonna make me start crying.
And he looked back down and didnt say any thing for a while , till he said well there are med's out there to help, and he give me a hug as i left his office. So like you that told me my disease was very bad and serious i just guess i didnt realy know it was that serious, and bursted my bubble of i can beat this and im gonna get better or at least half way back to my old self.
And left his office crying and cryed for several day's. Becuse dr's just dont show there emotions
at all usely, but in our case of been seeing them for so long and the same dr seeing my children as babys and now are grown i gusee they do get emotionaly attached.
As you have been such an inspiration to me and lots of others here in our time of destress and
scared times Please take a deep breath' and you are a very strong woman and cry all you want
then regroup and take it one day at a time! And surley keep up your Goal's!!
My disease new thing is it has also dammaged my heart valves so i go the cardilogist to see how bad that is, also new is crainal neuropathy cant feel my face and face pain, And news from my neurologist

steve.b
04-08-2011, 05:22 AM
the new normal will see mari with her head held high.

adl011
04-08-2011, 06:51 AM
Oh Mari, I'm sorry this hurt you so bad. I personally haven't ever had a doctor tell me I wouldn't be able to work, but at my last appointment my gp asked me if I am applying for disability with the help of the new specialist, or if I will need his help. This kinda threw me for a loop bc while I did consider disability when I was first diagnosed, I, like you and many others here, decided lupus would not control my life. When the dr mentioned disability in this way, it kinda hurt me bc im working on my masters degree right now and plann to get my doctorate in the near future, and racking up over$ 60, 000 in student loans to pay back. If my end is disability, and the dr already feels I need to qualify, I kinda feel like what's the point of working so hard and stressing my body and my family if I'll never use it. Its been a struggle for me, especially since my husband thinks I should ask the specialist if I should apply for disability. I guess the point im trying to make is that we expect to be able to work bc that is" normal" but it may not necessarily be normal for us. I know you want to go back to work, but your old job may be detrimental to your health and you have to take care of you first bc your daughter needs you, and we need you here. :) I hope you have a better day today, and you start feeling better. :)

God bless,
Amanda

SandyR
04-08-2011, 07:13 AM
"I can promise you that no matter what it looks like now emotionally and mentally it gets better. From what I have experienced and what I have seen/heard from others, I believe that many of us actually go through the 5 stages of grief when we figure out that we are sick. I think we mourn the life we once knew just as we would morn the death of a person.

1. Denial and Isolation- When I first had to face how sick I was I was in complete denial. I knew that they would get this all worked out and I would be right back like I was but BETTER! I also stayed away from people because _________________________ (fill in the blank here. for me it was because I put on so much weight from the meds and it was too much trouble to get prepared for the sun)

2. Anger- I went through a phase of being really pissed because I was/am sick. I do my best to be a good person. A moral person! I don't lie, cheat, steal. I am honest and I take care of my daughter. I have done everything right and look where it got me! My friend ___________ is out cheating the government and cheating on his wife but I am the one to get sick! (Anger was easier to deal with then accepting the truth)

3. Bargaining- Some people bargan with God or their Heigher power during this time. "OK, If you just let me get well and beyond this I will_______________________". It can also be used as a type of remorse. "If only I had done (XYZ) sooner then maybe I wouldn't have become this ill.

4. Depression - This one is often the hardest to get beyond. "My life will never be the same. I will never be able to do _____________ so why even try. Nobody in my family understands why I can't go do _______________________ so I am letting them down again. This one is almost a "giving up" because we see no future. One thing that is very important is to remember that, even though Depression can be be part of grieve, it can also be part of our disease. Lupus and other autoimmune diseases tend to have a mental aspect so it is VERY important to go to a doctor and get help with this (either meds or advice for other ways to relase the depression)

5. Acceptance. - This is the place where we hope to get. Some people take longer than others and some really don't get here at all. Acceptance is where we understand that we are sick but we also understand that it doesn't mean that our life is over. We find a new way to live and find new things that bring us joy. We come out of the darkness of our disease and see that there is light at the end of the tunnel. Now we begin searching for things that we can do to enhance our life because for the first time we can see that our life isn't over it is simply different."

I'm posting your words here. I think it's understandable that you got upset by the doctors words. I also think he was specifically trying not to hurt your feelings when he chose those words. Before he said them I think a part of you was fully accepting your disease and a part of you was bargaining with your disease - "I want to get this all under control so I can go back to work and to a more normal life" - and I think it's the same bargain we all try to strike. Normal is what we all want. After he said that I think you took at step back to anger because he indirectly said that you may have to accept that you will not be able to achieve normal. At least normal as you described it in your bargain. I would have been upset by that too. Who is he to destroy your dreams, right? But I don't think he was doing that purposely. I think he was trying to cushion the blow of the fact that you may have to alter your goal slightly by redefining "normal" because you might not be able to go back to a 40 hr work week with a 30 mins each way commute and come home to cook and clean and chauffer and council a teenager. You might be able to do it. We just won't know until you know. But the thing is, no matter what he said, really it is you who would know what you are and aren't capable of and who has the greatest power to make your dreams a reality. Don't worry about what he said because you already acknowledged that you aren't going to give up so use that emotion as a fuel to keep you going when you do feel like giving up. You really do such a great job here cheerleading and counseling all of us that I think sometimes you forget that we are here for you too so please don't ever apologize for your rants or for sharing your feelings or feel like you have to explain that you feel more comfortable talking about certain issues with your Lupie Family than with your Real Life Family. (((HUGS))) I've gone off on a ramble again and I hope my message is a lot clearer than my thoughts and that it sounds the way I meant it to - with love and concern.

tgal
04-08-2011, 07:31 AM
Don't you know you are not suppose to turn my words back on me? They sound better coming out of my mouth then they sound going into my ears! Honestly I think you are right. I am not so sure I went back to anger but I can tell you I hit on the depression part! I know there was a part of me that already knew that my old life was not going to ever be the place I went again. When I spoke to my old boss yesterday (on the anniversary of my leaving) I apologized to her because now that I have seen how bad my brain is involved in my illness I know I made mistakes that they are most likely paying for right now. Logically I knew that I couldn't go back to that kind of work and heck, I am sure part of me even knew what he said. I had just never heard it voiced and that took me back.

I am very thankful for each and every one of you because just voicing it myself and crying it through has made me feel better. It is what it is and I mean it when I said that Lupus will not beat me. It won't but yes, I may have to modify my plan for where my life is going. That may not be a bad thing at all.

tgal
04-08-2011, 07:47 AM
Oh Mari, I'm sorry this hurt you so bad. I personally haven't ever had a doctor tell me I wouldn't be able to work, but at my last appointment my gp asked me if I am applying for disability with the help of the new specialist, or if I will need his help. This kinda threw me for a loop bc while I did consider disability when I was first diagnosed, I, like you and many others here, decided lupus would not control my life. When the dr mentioned disability in this way, it kinda hurt me bc im working on my masters degree right now and plann to get my doctorate in the near future, and racking up over$ 60, 000 in student loans to pay back. If my end is disability, and the dr already feels I need to qualify, I kinda feel like what's the point of working so hard and stressing my body and my family if I'll never use it. Its been a struggle for me, especially since my husband thinks I should ask the specialist if I should apply for disability. I guess the point im trying to make is that we expect to be able to work bc that is" normal" but it may not necessarily be normal for us. I know you want to go back to work, but your old job may be detrimental to your health and you have to take care of you first bc your daughter needs you, and we need you here. :) I hope you have a better day today, and you start feeling better. :)

God bless,
Amanda

Yes, that was another tough time for me. My mind didn't want to accept that I was going to go on disability! I tried to fight it but once I wasn't working and couldn't I figured out really fast that $300 a month wasn't going to be OK for long! And it takes so long to get approved for most of us. Looking at it now I was luckier than many people. It only took me about 11 months and for some it takes years (it felt like years believe me!) Yes, a new normal. I have said those worsds so many time. We have to figure out our new normal. I did that but I guess on a temporary basis. I mean I knew my life would be modified forever I just never thought it through I guess.

I am much better this morning. I pouted, I cried, I vented (thanks to all of you) and, except for being tired because I have only had 3 1/2 hours of sleep in the last 48, I am much better today, It always makes me feel better when I get to vent to all my Lupie friends. I don't know where I would have been without all of you

rob
04-08-2011, 09:33 AM
Hi Mari,

There was a time when I had high hopes of returning to work. Even if I couldn't handle having my own business, at least I could do something, even if it was only part-time. I had to finally concede that in my current situation of having both SLE and MS, that this is just not a realistic goal. Now, I think you know me enough to know that I don't back down or concede on an important thing like this, I am not one to easily give up on anything. But the day came, that not only my Dr., but also my family, told me that my hopes of getting back a career, or even just a part time job, was just not realistic. It would not be fair to a prospective employer, or to me. The way my flares are prevent me from being able to show up and perform on time, every time. No employer want's that, and no otherwise hard working and punctual employee (meaning us), deserves to have their reputation damaged by suddenly becoming that person who is always late, and unable to perform their duties.

I accept this fact, but it doesn't mean Lupus or MS have beaten me. It also does not mean that I no longer have hopes and dreams. It just means that for medical reasons which are beyond my control, I can no longer work.

In my mind, there is really only one way either of my diseases can beat me-and that would be if they kill me. Beyond that, any changes I have to make or accept in my life that are a direct result of these diseases do not constitute a victory for them or a defeat for me. It's just an adjustment.

There's more than one road in life, and these alternate routes can lead us to the realization of new dreams that we never would have imagined were a possibility in our old lives.

Rob

magistramarla
04-08-2011, 09:52 PM
Hi Mari,
I went through the same thing. When we were moving out here, I was thinking about teaching, or at least, tutoring here. I have finally reached the conclusion that the "teacher" part of my life is finished. That doesn't mean that my life is finished - I've just moved on to a different stage in my life.
It will all work out - don't worry. And meanwhile, we're all here for you!
Hugs,
Marla

Linda From Australia
04-09-2011, 01:27 AM
As you know I have been very sick from complications from an operation I had on January 4 (and yes I am still in pain). Many people … surgeon, GP. Rheumatologist, physiotherapist, dietician, work colleagues, deputy principal and senior teacher have all suggested that perhaps I should consider working part time for a year so I can recover. I saw red and told myself that there is no way that I am going to accept what these people were assuming about how I am slowly becoming disabled. Besides, I am only 48, and still have heaps to do, regardless of the fact that I walk around the school and home in agony, like a crippled old lady.

So when I saw my daughter’s psychologist (we see him every 2 – 4 weeks to help her with her autism) and I told him about what people were advising me, he hit the nail on the head. This is what he said.


“I am not going to tell you to do anything Linda; you will know yourself when you are ready to cut down on your work load. People are caring, but they cannot force anyone to believe in something they are not ready to believe in. Keep working until you come to the point where you realise you cannot continue, then you will feel as though you have done the best you can”.

So am I going to cut down on my work load you ask?
OF COURSE NOT!
Instead of the pain consuming me, and dictating to me what I can and cannot do, I have made a huge adjustment to learn to live with my pain, and enjoy life. I am going to continue to eat healthy food, exercise, reduce my stress load, make adjustments at school so I can still be a good teacher, take heaps of rest, and do the best I can. I am going to do things that I enjoy, and take my pain medication when I need to; not when I cannot cope with the pain anymore.

Last week my physio said I was doing so well on my exercises (which are just pelvic floor exercises at the moment) he put me on a new exercise programme. Feeling very proud of myself that I am closer to being well, I slowly realised that I just took a big step backwards. The new exercises caused so much pain that I had to go back to the original exercises. I felt as though I had failed – AGAIN!

The realisation started to hit me that perhaps people were right, that I need to take it easy and take a step back from teaching full time. I have lost 15kg (33 lbs) in 8 months because I have been so sick, and I am still slowly loosing weight. Even though I exercise for 30 minutes twice a day thinking that I would build up my muscle mass, I am actually fast loosing muscle mass, causing a lot of pain when I sit on hard and even soft chairs. But I am not giving in just yet, I am still prepared to put up with the pain and enjoy what I love in life.

. . . So basically what I am saying is . . .
Even though I am not as sick as you, don’t give up on your dreams just yet. Make plans so you can achieve whatever you want to do. But when you come to realise that your dreams need to be adjusted, make some realistic plans and enjoy your life.

tgal
04-09-2011, 07:20 AM
Hi Mari,

There was a time when I had high hopes of returning to work. Even if I couldn't handle having my own business, at least I could do something, even if it was only part-time. I had to finally concede that in my current situation of having both SLE and MS, that this is just not a realistic goal. Now, I think you know me enough to know that I don't back down or concede on an important thing like this, I am not one to easily give up on anything. But the day came, that not only my Dr., but also my family, told me that my hopes of getting back a career, or even just a part time job, was just not realistic. It would not be fair to a prospective employer, or to me. The way my flares are prevent me from being able to show up and perform on time, every time. No employer want's that, and no otherwise hard working and punctual employee (meaning us), deserves to have their reputation damaged by suddenly becoming that person who is always late, and unable to perform their duties.

I accept this fact, but it doesn't mean Lupus or MS have beaten me. It also does not mean that I no longer have hopes and dreams. It just means that for medical reasons which are beyond my control, I can no longer work.

In my mind, there is really only one way either of my diseases can beat me-and that would be if they kill me. Beyond that, any changes I have to make or accept in my life that are a direct result of these diseases do not constitute a victory for them or a defeat for me. It's just an adjustment.

There's more than one road in life, and these alternate routes can lead us to the realization of new dreams that we never would have imagined were a possibility in our old lives.

Rob

Sorry I didn't answer this yesterday but when I get too down at my situation I try to "get out of myself" which is what I did yesterday. We went to see this wonderful young man who is in the Cancer Center. He is a friend of my daughters and the family is now a friend of mine. He is on his 3rd round of Chemo after brain surgery. When we finally got home it was after 11 and I finally slpet!

You are completely right, Rob! The more I have thought about it the more I can see that this may be a good thing. It is different than I had planned but but maybe I will get to be a mother that is around more and one day, an awesome grandmother. I will find things that I can do and be involved that way (we will be doing the Relay for Life in honor of my mother and the young man I was telling you about. It is at night so I don't have to worry about the sun). I won't be knocked out by this. I was made to look at it honestly and now I can begin to have an honest look at my future. Different, maybe. Beaten? Never.

Thank you for always beeing there

tgal
04-09-2011, 07:28 AM
As you know I have been very sick from complications from an operation I had on January 4 (and yes I am still in pain). Many people … surgeon, GP. Rheumatologist, physiotherapist, dietician, work colleagues, deputy principal and senior teacher have all suggested that perhaps I should consider working part time for a year so I can recover. I saw red and told myself that there is no way that I am going to accept what these people were assuming about how I am slowly becoming disabled. Besides, I am only 48, and still have heaps to do, regardless of the fact that I walk around the school and home in agony, like a crippled old lady.

So when I saw my daughter’s psychologist (we see him every 2 – 4 weeks to help her with her autism) and I told him about what people were advising me, he hit the nail on the head. This is what he said.


“I am not going to tell you to do anything Linda; you will know yourself when you are ready to cut down on your work load. People are caring, but they cannot force anyone to believe in something they are not ready to believe in. Keep working until you come to the point where you realise you cannot continue, then you will feel as though you have done the best you can”.

So am I going to cut down on my work load you ask?
OF COURSE NOT!
Instead of the pain consuming me, and dictating to me what I can and cannot do, I have made a huge adjustment to learn to live with my pain, and enjoy life. I am going to continue to eat healthy food, exercise, reduce my stress load, make adjustments at school so I can still be a good teacher, take heaps of rest, and do the best I can. I am going to do things that I enjoy, and take my pain medication when I need to; not when I cannot cope with the pain anymore.

Last week my physio said I was doing so well on my exercises (which are just pelvic floor exercises at the moment) he put me on a new exercise programme. Feeling very proud of myself that I am closer to being well, I slowly realised that I just took a big step backwards. The new exercises caused so much pain that I had to go back to the original exercises. I felt as though I had failed – AGAIN!

The realisation started to hit me that perhaps people were right, that I need to take it easy and take a step back from teaching full time. I have lost 15kg (33 lbs) in 8 months because I have been so sick, and I am still slowly loosing weight. Even though I exercise for 30 minutes twice a day thinking that I would build up my muscle mass, I am actually fast loosing muscle mass, causing a lot of pain when I sit on hard and even soft chairs. But I am not giving in just yet, I am still prepared to put up with the pain and enjoy what I love in life.

. . . So basically what I am saying is . . .
Even though I am not as sick as you, don’t give up on your dreams just yet. Make plans so you can achieve whatever you want to do. But when you come to realise that your dreams need to be adjusted, make some realistic plans and enjoy your life.

I so completely understand where you are coming from. That is exactly where I have been these last months. That is not where I am now and I am thankful for it. I am NOT saying that if I get down to a mild case that I won't go back to work but what I am saying is that this really hurd for me to get beyond the "I am going to fight to get back to who I was before". The breakdown the other night changed that. It changed because I am a better person now. I am different now. I will be a new me (as I have said here so many time) but I will not be a lesser person than I was before. I will be better because it is no longer about what I do. It is about WHO I am. That is very freeing.

Keep fighting Linda! Do what your heart tells you. That is exactly how we survive and flourish!

Colleenc
04-09-2011, 09:53 PM
Mari, I'm so sorry your feeling down, I know the feeling of hearing words you don't want to hear come out of someone you trust. I have to thank you for writing this post, I have read through it again and again, because I'm just coming to the realization in the last few days, that after the last few months my life has completly changed and I'm not ready to embrace most of these changes, I always wanted to leave my job (to far of a drive and to much stress) , but not now and I wanted to leave on my terms not my bodies or someone elses. I have found all the post to be very helpful to me right now. I'm trying to make my decisions and still deal with all the major health setbacks.
We cannot let this disease win!!!

kim,l
04-10-2011, 04:59 PM
dear mari i am sorry that life is so tough for you right now my good friend things people say sometimes can get you down i was recently talking to my mother inlaw and told her we were planning a camping trip in about 4 months and she told me to stop thinking stupid and sell camper as i am not capable of doing anything like this anymore and should be just resigned to staying at home and stop dreaming also she has been sending us meals she is 79 years old and while i am greatful it makes me feel useless, we all know this disease has changed us but we still have the right to have a goodtime and with planning we can do some of the things we want to do it just takes longer to do but worth it hugs kim l.

Linda From Australia
04-15-2011, 04:54 AM
tgal have you seen your doctor again?

tgal
04-15-2011, 06:14 AM
No I haven't. I have an dappointment in 3 weeks but I have debated going in early but that is all I seem to do. This flare won't quit and the nitro isn't helping the chest pain. Ever inch of my body hurts. The rashes on my hand and fingers still won't heal, my head (the skin) is starting to hurt which means that I am about to have the lovely boils pop out out/Some days I have literally slept for 20 out of 24 hours. Yada yada. Ya'll know the drill. Whine whine... where is my cheese?

Linda From Australia
04-15-2011, 06:29 AM
OUCH ...
Your cheese, let me see ..... go and milk a cow (and make that a skinny cow so you don't take on an excess of calories)

tgal
04-15-2011, 08:09 AM
OUCH ...
Your cheese, let me see ..... go and milk a cow (and make that a skinny cow so you don't take on an excess of calories)

LOL. I must say that I am very jeolous of the people here that lost all this weight when they became ill. One of my early symptoms was that I put on 40 lbs in 5 months for no reason! Now add a year and a half of steroids to that and ohhhh, you get the picture!

Linda From Australia
04-15-2011, 10:20 PM
Yeah I get the picture .... you don't really want me to talk about how much weight I put on and lost do you. HEY I can, really, there is nothing you can do about it. It is not like you can come over here and thump me can you .. ha ha ha.

I have been seeing a physio twice a week, and now once a week. I went to him on Wednesday and he worked on both of my hips - OH MY GOSH - it really hurt. I was so close to tears. I asked him if it was necessary and he said it was because ... well I can't remember what he said because I was in so much pain. I know he did some good things because I could feel a few pops etc... and there seem to be a bit easier to move. Anyway, while I was holding back the tears he told me to

"Smile and breathe - pain is good" So by the time I got back to school (around 1:30pm) the kids took one look at me and asked me what was wrong. So I told them. Then I said "sorry, but I am in too much pain to teach you, you just have to sit there in silence and do some work sheets. They errupted, and said NO we want to have fun, not have boring lessons. So I told them "Don't blame me, complain to my physio". So they did, all 30 students wrote letters to him.

Here is a sample of some of the letters, from what I can remember ...

"Please don't hurt my teacher again otherwise she will give us boring work"
"Be gentle with my teacher, we want to have fun"
"If you don't hurt my teacher next time I will give you a chocolate"
"I will give you $100 if you are gentle with my teacher"
"If my teacher is not in pain when she comes back next time I will buy you a ticket to Bali"
"Pain is not good!"

However, my students really know that the physio is helping me to get better, so here are a sample of some of the other letter....

"Please hurt my teacher because she is our only chance of learning, and I want her to get better"
"Hurt my teacher even more, she needs to get better"
"Thank you for helping my teacher"
"If you really need to hurt my teacher you can so she can be in no more pain"

OK so you get the picture? I went to his office after school, planning to just give the letters to the receptionist, and there he was as I opened the door. He was surprised to see me 2 hours after - "beating me up!" He asked me what was wrong and I told him about my students wanting to write him some letters, he looked very confused and I asked him just to read a couple and he would see why, then I started to head off out the door. He started reading them and cracked up laughing, he called his receptionist over to and continued reading the letters to her. Then 3 more of his patients appeared in the waiting room and the whole waiting room was laughing. I looked at them and told them that perhaps they should find a more compassionate physio.

Anyway, the reason why I am telling you this is .... I HAVE NO IDEA .... it just seems like a good story to tell about how we cope with so much pain, and then we have medical people inflict more pain on us and laugh about it.

The weight loss ... now I am walking for 20 minutes a day, trying to go to the pool walking for about 20 minutes in the pool and about 5 minutes of swimming. As well as doing some physio for 30 minutes twice a day. How humiliating, there are some really FAT old ladies walking in the pool as well. And you guessed it. They sprint right past me. I look healthy enough on the outside, except for my slow walking and limping. But these ladies are athletes. How can they walk so fast with all that weight on them? (sorry if this might have been anyone reading this thread if you were at the same pool as me) I actually told a couple of the old ladies that they are my inspiration that one day I will be able to walk as fast as them.

Now any person who is not very intelligent would think that there would be some building up of muscles - WRONG - my muscles are wasting away - ?????? I have lost 15kg (33 pounds I think) in 8 months, but I think most of that is because of the kidney problems I had last year. Some of the weight loss is from having a VERY healthy lifestyle. I am concerned about how I can feel my bones now, and it really hurts to sit down. I am not skinny, just a nice size now. I am still loosing weight, but it is very slow, and I don't want to loose any more weight because I think it is healthy not to be too slim. The physio said I should start drinking protein drinks to build up my muscles, so I will talk to my dietician on wednesday about that and then wait until I get my kidney function test in a couple of weeks.

WOW sorry for hijacking your thread tgal, thought I would encourage you to keep dinking those healthy low calorie banana milk shakes. I will try to chat to you more often in the next few weeks while I am on holidays and I work from home programming for the next term. I miss our chats soooo much!!!!

tgal
04-15-2011, 10:38 PM
Thanks for a wonderful post Linda! It made me smile and I really needed it tonight! Way too late to go into it but I just wanted let you know that I miss our chats as well!!!!!

magistramarla
04-16-2011, 07:49 PM
Hey Mari,
That sounds like a really bad flare. You should see your doc so that he can see what is going on and document it, as well as do something to give you some relief.
Take care of yourself!!!
Hugs,
Marla

magistramarla
04-16-2011, 07:55 PM
Linda,
I loved your post! It made me smile and think of my own sweet students back in Texas. They were also very protective of me, and wanted to go "punch out" the lab tech when I came back to school with bruises on my arms.
When I had a muscle biopsy and went back to school with a scar on my arm, they encouraged me to scare the freshmen by telling them that it came from breaking up a knife fight in the cafeteria. I worked in a very tough school, but I had some very sweet students!
They are the ones who keep us going when we teach, aren't they?
Hugs,
Marla

Saysusie
04-16-2011, 08:33 PM
Tgal; I am so sorry to hear that you are still dealing with so much and in so much pain. You, of all people, should no that there is NO SUCH THING AS WHINING..but do have a glass of wine and some low-fat, dairy-free cheese :-)
I seem to continually lose weight and each time that I have a flare-up, I lose a few more pounds. Losing weight is no fun either because with the weight gone, so goes our energy (like we don't already have enough problems in that area), our ability to maintain an upright position for any period of time, and our ability to eat (especially if you already have an eating disorder - like me). So, when these issues are present, they only compound the issues of the disease which makes the disease exacerbate, which compounds the weight loss, which exacerbates the disease....well, you get my drift.
Sorry, I got off subject there and I apologize. The subject is "you" and how much you are suffering. I do hope that you decide to go to your doctor earlier than the scheduled appointment. There is no reason for your entire body to be in such pain and there must be a way to ward off the boils that you feel are creeping up. Please let us know if you do go & what the doctor does for you. I am sending you {{hugs}}.

Peace and Blessings
Namaste
Saysusie

SandyR
04-18-2011, 06:50 AM
LOL. I must say that I am very jeolous of the people here that lost all this weight when they became ill. One of my early symptoms was that I put on 40 lbs in 5 months for no reason! Now add a year and a half of steroids to that and ohhhh, you get the picture!

so then it's not just me. *wipes brow* phew. I'm abnormal enough. LOL

tgal
04-18-2011, 09:08 AM
Tgal; I am so sorry to hear that you are still dealing with so much and in so much pain. You, of all people, should no that there is NO SUCH THING AS WHINING..but do have a glass of wine and some low-fat, dairy-free cheese :-)
I seem to continually lose weight and each time that I have a flare-up, I lose a few more pounds. Losing weight is no fun either because with the weight gone, so goes our energy (like we don't already have enough problems in that area), our ability to maintain an upright position for any period of time, and our ability to eat (especially if you already have an eating disorder - like me). So, when these issues are present, they only compound the issues of the disease which makes the disease exacerbate, which compounds the weight loss, which exacerbates the disease....well, you get my drift.
Sorry, I got off subject there and I apologize. The subject is "you" and how much you are suffering. I do hope that you decide to go to your doctor earlier than the scheduled appointment. There is no reason for your entire body to be in such pain and there must be a way to ward off the boils that you feel are creeping up. Please let us know if you do go & what the doctor does for you. I am sending you {{hugs}}.

Peace and Blessings
Namaste
Saysusie

No need to say sorry for talking about what goes on in a flare and how they are affect you. There are so many ways that this disease attacks us that it is nice that everyone can hear so many different sides