exercise

[ingemlb]

Hi all. I have another question re exercise. Is it better to ask for extra pain meds so that it is possible to continue trying to walk when pain flares up or should you listen to your body and rest. The Rheumotologist seemed to be stressing from day one to keep moving. However this pain doesn't improve with movement.
Are they worried about muscle atrophy as another disease symptom or medication side effect or is it simply that they feel lack of movement will make the muscles whither.
I have had long periods of immobility then on days where psin was not so strong i was able to jump on a treadmill hence muscle atrophy has never been an issue
Just wondering what others have experienced. Thanks. Inge

[Debbie C]

Good'ay Inge...I personally wouldn't take more pain meds to exercise,you body is telling you to rest and once those meds wear off you will just feel worse if nothing else try to just walk about a little at a time and don't over do it. You should be taking some Vit d-3 and calcium for your bones.

[Pete]

Exercise is needed to prevent muscle atrophy, but also to prevent deep vein thrombosis - the formation of blood clots in the veins (primarily) of your legs. Pieces of the clots can break off and go to your heart and lungs, so it's life threatening. Pain is an issue, and listening to your body is important. Start slowly on exercise - even if it's just walking around your living room once an hour. As you gain strength and feel better, slowly increase the amount of exercise you do.

[me2]

It is important to identify the type of pain you are talking about. Some types of pain should not be over ridden because further activity does further damage. If you are talking about joint pain directly caused by WG it is my understanding that ,within reason, further activity does not cause further damage and there fore I would think it would be a good trade to deal with the pain to get increased activity.

I know in my own case I have had a great deal of general pain that causes me to be inactive for long periods of time. During which I gain fat (a double whamy of no exercise and prednisone) and loose muscle (also a double whamy- same cause).

I consider it a good trade if I can get help with the pain enough to be active. My problem is convincing any doctor that I am not just a patient who is now addicted to pain killers. This is how most doctors will view the subject. My behavior of claiming pain and wanting pain medication is the same as someone with "drug seeking behavior". Never mind that I have never been addicted to pain killers and only get my meds from the same docs for a couple of dozen years.

Of course they will argue the logic of it rather than tell me they think I'm a drug addict in the making. My logic falls on deaf ears as I don't think they really understand this kind of chronic pain and how to manage it , or the fact that a patient CAN manage it better by having access to intermittent use of pain medication.
Your situation is complex and can change over time. I started out like you falling pretty much on top of the curve of being able to maintain some fitness in spite of my problems. But slowly over the course of years I lost ground and have gained fat and lost muscle- not a good thing for anyone. Lack of fitness invites a host of problems not to mention it is a lower quality of life. If I had access to judicious , and monitered use of pain medication I would be in better shape today.

[JeanMarie]

Also most of us are currently ( or were in the past) on prednisone & pred causes bone loss. One way to prevent that is with weight bearing exercise like walking. It can be gentle no need to run races but try to work up to 30 minutes a day.

We're all different but my own experience with bone/joint pain is it went away pretty quickly once I started treatment. At one time I needed help getting out of bed & but within a week I was walking without pain so I'm suspicious about continuing pain. Maybe it's time for a discussion with your doctors.

I hope this gets sorted out soon & you are better!

[Debbie C]

I just saw on the news that taking a teaspoon a day of yellow mustard helps with muscle and joint pain and that many drs. will have NFL players take it along with other athelects. I don't know if that would help you,I ,myself can't stand mustard so it would only make me sick. Also cherry extract was told by my mothers dr. to take for pain :confused1:

[MikeG-2012]

I just saw on the news that taking a teaspoon a day of yellow mustard helps with muscle and joint pain and that many drs. will have NFL players take it along with other athelects. I don't know if that would help you,I ,myself can't stand mustard so it would only make me sick. Also cherry extract was told by my mothers dr. to take for pain :confused1:

Thanks for the excuse to go out and have a bratwurst with mustard every day Debra! Wow, you're the best! LOL! :tongue1:

[ingemlb]

Thank you all for your replies and advice. I think we have worked out my pred needs to be increased to address the new and any remaining pain. So starting at lunchtime I will be taking 40 mg of pred a day (up from 25). They will monitor for 2 days then review it. So that should give a quick answer. Its the pain in foot and leg that is causing the problem with walking. We don't know if its inflammation or nerve pain.
So I will still do a bit of walkting to bathroom and kitchen and visiting one of the other patients up the corridor and hope to increase it once pain has been dealt with.
Only downside is having to stay longer here at the hospital. But I was only diagnosed one week ago and so much to learn I would rather have more of a handle on it before going home. So much easier to have tests and see specialists here than once I am back home. Inge

[mishb]

If the increase in pred doesn't fix the pains then it is probably not caused by WG

I'm sorry you have to stay in longer, but as you say, it is better to get everything sorted whilst you are still in there

[JeanMarie]

Is the pain just in one leg? If it is, they might need to rule out a blood clot. Just my thoroughly unscientific thought.

[ingemlb]

Hi JeanMarie. Funny you should mention that. They sent me on Monday for an Ultrasound of the shoulder, the foot and the entire leg. The entire leg was to rule out blood clots. Well the main problem was the pain in the foot radiating up the leg. So the Radiologist was so fixated on the blood clot he forgot the foot. He did the shoulder and found inflamed joint and tendon but reported absolutely nothing about the foot or ankle or knee!! So I thought they were going to send me back for another one but instead yesterday my Prednisolone was increased from 25 to 40mg. Woke up yesterday morning with pain in the wrist as well. I had a bad afternoon yesterday. The pain had been fairly consistent. Occasionally I got a bit of relief during the night but as soon as I started walking it kicked it off again. Then yesterday afternoon (took the Pred at lunchtime) it was quite bad lying in bed. But by late at night (midnight) I got up to make a cup of herbal tea and found that I could actually walk without a limp. I still felt the pain in the foot but it was definitely improved. This morning I took another walk to the kitchen and was even more improved. Felt no pain during the night. SOO..... the Prednisoline seems to be doing it's thing very quickly in my case. It's much the same when I was first put on Prednisolone. I reacted extremely fast and inflammation started to retreat within a day. Within 2 days my wrists and hands almost looked normal and I could type for long periods without any pain at all. Then other joints started to clear up. (Mind you was still on regular pain meds and when it came close to taking the dose the pains would flare up). Then 2 weeks later they reduced the Pred to 20 and I think this was the mistake.
Anyway HIP HIP HURRAY seeing some improvements so I think we are on the right track. But I won't celebrate just yet as it has been coming and going however the pain on walking has been consistent and severe since the weekend :) Inge.

[MikeG-2012]

It really sounds like your docs need to get on a plan on what the pred needs to be for the long term. Constantly changing the dose is not going to do much except make your body revolt and have all kinds of problems. After my diagnosis, I was on a 6 month tapering of high-dose pred, starting at 60mg per day, and down to 10mg over the course of the 6 months. That kept the traveling rheumatoid issues and swelling gone for good. I don't have any of those issues now, as long as the disease stays manageable and in drug induced remission.

[ingemlb]

Thanks Mike. I think they are very much aware of that. I was only diagnosed a week ago with rather confusing symptoms. Because all my vital organs are in such a good shape we all thought originally the WG had just hit and could get away with low dose treatment. I was also scared stiff of the idea of prednisolone and methotraxate so I guess they kept thst in mind too. But now its becoming clearer that this has been going on for a long time. I myself had my own theories as to what protected my organs all these years but thats a whole new topic.
So considering none of these specialists here had ever met me before I landed in emergency 4 weeks ago and presented with very nasty vasculitis but nearly every other test brought back unexpected results I think they have done a good job getting this far. From what I am learning here diagnosis can be very slow.
When I first arrived in the forum last week I was in total panic as I had read how nasty WG can be so was firing lots if questions. Thanks to the members here I have learnt to calm down. I was so upset that I had a nervous breakdown and they have called on a psychiatrist to see me today which can't hurt. Our family has had a huge amount of trauma all of 2013 and 2 days before Christmas we buried Mum. Since then I became increasingly more ill but took a few weeks ti seek help and then ti discover about thus disease did nothing to cheer me up.
I am now sure we are on the right track and have to trust these specialists who have a very good reputation to sort it out for me . :) calm cool and collected. The new me lol Inge

[MikeG-2012]

Thanks Mike. I think they are very much aware of that. ...
I am now sure we are on the right track and have to trust these specialists who have a very good reputation to sort it out for me . :) calm cool and collected. The new me lol Inge

You're welcome. I was just looking out for one of the family! (-8

I am so glad you are confident in the docs.

I went through the start of my journey without this forum and the good people on it. I was sick for about 4 years prior to diagnosis, and for me, it was a HUGE RELIEF just to finally know what the ____ I had!

[ingemlb]

Yes that must have been awful. I spent 7 years on another treatmen and when I accumulated new problems the last 4 years I just hung in there telling myself they will go away but deep down wondering what the hell was going on. So init I felt this immense relief to have a name and reason for all these things. But that was when I was too zonked out to study the nastiness of WG.
Thanks for caring Mike. I keep telling everyone how helpful this forum has been :) inge

[annekat]

The only good thing about having Wegs is getting to be on this forum!:thumbup:

[windchime]

Inge, I'm sorry for the loss of your Mum then all the disease drama. It does explain your panic a bit better. Glad you've calmed down and it never hurts to see a professional. You are still dealing with your grief over the loss of your Mum and then this.

I was at my first visit with my pulmy a year ago April when I got the call my Dad had passed. So I too was dealing with flare and grief. I understand where you are coming from. Hugs to you. :hug1:

[ingemlb]

Thank you Cindy. Yes you would understand :( Just saw the psychiatrist who was actually kind to squeeze me in and didn't need very long to sum up the situation. He is blaming it mainly on the prednisolone aggravating all tbe bottled up stress and grief. He thought I appeared racy. Which I couldn't dispute and managed to notice I am sleep deprived so starti g me on some melatonin and regular (for now) diazapam. I find the valium to work well for me and usually have it on standby when I find myself heading for an anxiety or panic attack. So maybe taking both for a few days will let me catch up on sleep and stabilise. He didn't think I was depressed, more mood swings which sounds about right as these episodes seem to wash over me without control. Inge

[windchime]

I feel the calmer you already. I think you will be able to handle things better. Good you had an understanding doc that was willing to understand and help. Hugs to you. :hug2:

[annekat]

Inge and Cindy, my dad died right around the time of my dx, I was too sick to go see him, and I didn't know what I had until about a month after he passed away. So my feelings about getting Wegs are all jumbled up with my feelings about losing my dad, and the grief and depression I sometimes feel are for both. Since the disease is at the forefront of what I'm dealing with every day, the need to work through the loss of my dad gets pushed to the background. I know I haven't properly grieved for him and someday it will hit me like a ton of bricks. Right now, I'm having less severe problems with Wegs than either of you, I think. But I just wanted to empathize with getting hit with these two very different but equally life-changing events all at once.

Inge, I'm so glad you are feeling less afraid and more calm and collected since coming on the forum and learning more about what you have.

[pberggren1]

I'm so sorry Inge and Anne that you lost people so close to you during these tough times......:sad:

On a positive note I did some shopping today so therefore I had exercise......:thumbsup:

[ingemlb]

Thank you Cindy and Anne. The forum sure has helped me a great deal. I am so glad I found it! This is such a weird illness and can impact so many parts of your body that it would drive you crazy trying to understand it by yourself. Anne I am so sorry to hear about your father and yes... it's so hard to deal with that kind of trauma when you feel sick as a dog.
I slept a lot better last night and woke up with even less pain so I really fee I am ready to go home tomorrow. I also am no longer scared about how to proceed from here. I think I have a few good specialists I will keep on seeing as needed and I know which symptoms and organs I must keep an eye on more regularly. My previous idea of just wait and hope for things to go away has now changed and I will try to stay on top of this and not let it get so out of control.
I had to laugh when I looked up the term "racy" in the dictionary. It said "lively, entertaining and typically sexually titillating". Well ... I am sure that's not what it means in Psychiatric terms LOL so I am sure the meaning that came to me when the Psychiatrist asked me was I "racy" and got my husband to confirm that I am more "racy" than usual he meant my mind was racing along at a speed of knots. Mind you I knew he had hardly any time and so I had to get it all out very quickly but my mind races away during the night when I am trying to sleep and everyone walks in here and asks how I am tends to cop an earful so I am banking racy is "can't get your thoughts to slow down" lol
All the best to you. I am still assuming home tomorrow!! Inge :)

[ingemlb]

Thanks Phil. Good to hear about the exercise :) Our posts must have crossed in transit. Hope you have a good day or what's left of it :) Inge.

[annekat]

Thanks, Phil, and since this thread is supposed to be about exercise, I'm glad you got some of that today!

[annekat]

Inge, it seems like you have been in the hospital an awfully long time, and if you feel ready to go home, I hope you will, very soon! As for the term "racy", I think I would have been thrown by that a little, too. The definition you found in the dictionary fits what I think of it as meaning here in the US, and if a doctor, including a psychiatrist, asked me that, I'd think it was a little odd!

[NicShaf]

Hi Inge,
When I was on Pred, I had some leg pain, but for me it seemed to improve with walking and stretching. I started out slow, and worked up to longer walks at a faster pace. I have also found that gentle forms of yoga helps me tremendously. Hope you start feeling better soon!

[ingemlb]

Yes lol. I will check with him tonight:) but I am sure he was meaning racing or gushy lol as I was talking fast trying to give him as much background as possible. Lesson learnt ... never assume but ask for a definition. When he comes tonight I willmake sure I have my dressing gown on hahaha

[ingemlb]

Thanks Nicole. In my case the walking aggravated the pain quite substantially. Then it would stay severe from then on requing extra pain meds to cope. Now with the extra pred I can walk very freely without a limp in fact I feel like I could run. I was not confident if it was wise to push beyond the pain as I didn't know it that would increase the inflammation. Hence my questions here. So I think I learnt the reduced pred was no longer enough to fight the inflammation and as out of contol inflammation can damage the joints in my case I think rest until it resolved was the safer option? Inge

[annekat]

Yes lol. I will check with him tonight:) but I am sure he was meaning racing or gushy lol as I was talking fast trying to give him as much background as possible. Lesson learnt ... never assume but ask for a definition. When he comes tonight I willmake sure I have my dressing gown on hahahaOh, I'm sure it was harmless. He MUST have meant that you might be a little hyped up, and I'm sure had no other intention. I would not worry about it if I were you.

[mishb]

I started getting a fever and then what we thought was sinusitis, the night of my dad's funeral.

It is the stress of everything I think - and I agree, since finding this forum, I am very calm and collected :biggrin1:

[ingemlb]

Yes I think we underestimate the way stress weakens us and makes us more vulnerable :(

[annekat]

The only usual experience right before the onset of all my sinus and ear problems was attending my cousin's funeral. There was an abundance of very strong incense being dispensed, which I was not used to, and I started coughing a lot. The enormous, antibiotic-resistant ear infection started within two weeks, followed by the typical recurrent sinus infections that many of us have had for years pre-dx. I'll never know whether there was any connection between the funeral and the stress of my cousin's young death in triggering Wegs. Of course, someone there could have had a "really weird bug", as my ENT liked to call it. That is, the ENT I never had nor needed before any of this happened. Back to exercise, I got a lot of it going up and down the stairs at his office!

[windchime]

On a positive note I did some shopping today so therefore I had exercise......:thumbsup:

Me too, me too she raises her hand and waves it madly. :rolleyes1: I went shopping, hit about 4 stores, got my hair cut, had lunch, spent a lot of money. Got breathless carting all those bags around, but I was out of the house and moving. Yay!!! :biggrin1:


Inge: Glad you are getting out of the hospital today. At least you got some help while there and feel calmer about your release. All good things. :hug3:

[Alysia]

I had to laugh when I looked up the term "racy" in the dictionary. It said "lively, entertaining and typically sexually titillating". Well ... I am sure that's not what it means in Psychiatric terms LOL so I am sure the meaning that came to me when the Psychiatrist asked me was I "racy" and got my husband to confirm that I am more "racy" than usual he meant my mind was racing along at a speed of knots. Mind you I knew he had hardly any time and so I had to get it all out very quickly but my mind races away during the night when I am trying to sleep and everyone walks in here and asks how I am tends to cop an earful so I am banking racy is "can't get your thoughts to slow down" lol


Hi Inge,
when psychiatrist is doing his "check" he is checking not only the content of your talk but also the speed of it, the coherence of it, etc. "racy" means that you are very fast and overwhelmed with your thinking and toughts. a bit "manic". it can be the result of: too much pred, anxiety, not enough sleep, and other things. I hope that you are at home and feeling better.

[Alysia]

Inge and Cindy, my dad died right around the time of my dx, I was too sick to go see him, and I didn't know what I had until about a month after he passed away. So my feelings about getting Wegs are all jumbled up with my feelings about losing my dad, and the grief and depression I sometimes feel are for both. Since the disease is at the forefront of what I'm dealing with every day, the need to work through the loss of my dad gets pushed to the background. I know I haven't properly grieved for him and someday it will hit me like a ton of bricks. Right now, I'm having less severe problems with Wegs than either of you, I think. But I just wanted to empathize with getting hit with these two very different but equally life-changing events all at once.



Hi Anne,
I am sorry for your loss. sounds painful, even untill today. :hug2:

[ingemlb]

Hi Inge,
when psychiatrist is doing his "check" he is checking not only the content of your talk but also the speed of it, the coherence of it, etc. "racy" means that you are very fast and overwhelmed with your thinking and toughts. a bit "manic". it can be the result of: too much pred, anxiety, not enough sleep, and other things. I hope that you are at home and feeling better.

Hi Alysia. Thanks for that explanation. He sure would have got that impression! I am sleeping better, a bit calmer, not so weepy but not sure if I am less "racy" yet.
As to home. Alas that was not to be. The last few days I have been coughing up quite a bit of blood which seems not to be coming from the Sinus' so Monday the Respiratory Specialist is going to do a Bronchoscopy and check the airways. She mentioned that even if the lung scans and X-rays came up clear it would not show any inflammation in the airways and my cough sounded like their could well be pockets of it. Hence the decision was made to stay here until that test is done and also until results of sputum samples sent to the lab come back. They are now thinking that there may be airways involvement and the bloody sputum has not changed since the extra prednisolone so they may have to retying the treatment. Until that is all decided I am better of to stay here than have to deal with it all from home. It doesn't bother me to have to stay longer, I would much rather let them get to the bottom of this and get the correct treatment than find out down the track we have been using the wrong approach. All of the specialists are actually happy that the Bronchoscopy is happening as my symptoms to date have been a bit confusing. Inge :)

[ingemlb]

I started getting a fever and then what we thought was sinusitis, the night of my dad's funeral.

It is the stress of everything I think - and I agree, since finding this forum, I am very calm and collected :biggrin1:
Really strange Michelle. My flareup happened within days of Mum's funeral too. Mind you looking back I consider having flares all of 2013 and the last one pushed me over the edge :(

[mishb]

Really strange Michelle. My flareup happened within days of Mum's funeral too. Mind you looking back I consider having flares all of 2013 and the last one pushed me over the edge :(


Yes, mine was the same in 2009 starting with a serious truck vs. car accident, then a breast cancer scare (I actually had that biopsy the day before my dad died) and then his death and the funeral was the final straw for me too I think.

Anyway, this has nothing to do with exercise - how are the legs and feet feeling now? Have you been able to walk around more in the hospital?

[ingemlb]

Anyway, this has nothing to do with exercise - how are the legs and feet feeling now? Have you been able to walk around more in the hospital?

Hi Michelle. Yes walking not limping. So if these issues with me coughing up bloody sputum hadn't happened I would be home by now. :(

[Alysia]

Hi Inge, I am sorry for the "bloody" new stuff :sad: it is better to stay at the hospital as needed.
at least you have us with you, to pass the time.... :hug2:

[Alysia]

Yes, mine was the same in 2009 starting with a serious truck vs. car accident, then a breast cancer scare (I actually had that biopsy the day before my dad died) and then his death and the funeral was the final straw for me too I think.

Anyway, this has nothing to do with exercise - how are the legs and feet feeling now? Have you been able to walk around more in the hospital?

I am sorry Michelle. eventough I read it before, (when you once wrote about it), is still makes me chills :crying:
I can't bear the though of loosing a father.
your dad is watching you. he is your angel now.
and if he is as kind as you are, then he is one of the best angles.... :hug1:

[mishb]

I am sorry Michelle. eventough I read it before, (when you once wrote about it), is still makes me chills :crying:
I can't bear the though of loosing a father.
your dad is watching you. he is your angel now.
and if he is as kind as you are, then he is one of the best angles.... :hug1:

Thanks Alysia
I feel I am doubly lucky because my real father passed away before my 2nd birthday and the one that passed in 2009 was my stepfather for 35 years.
Therefore I have two dads watching out for me and my other brothers and sisters........and my mum makes sure they do :thumbsup:

[mishb]

Hi Michelle. Yes walking not limping. So if these issues with me coughing up bloody sputum hadn't happened I would be home by now. :(

I'm glad you are walking without limping now - I presume no pain either.
That's excellent news.

At least you are still in the hospital to get things checked out with the coughing........maybe they like you so much, they are trying to keep you there as long as possible :lol::hug1:

[Alysia]

Thanks Alysia
I feel I am doubly lucky because my real father passed away before my 2nd birthday and the one that passed in 2009 was my stepfather for 35 years.
Therefore I have two dads watching out for me and my other brothers and sisters........and my mum makes sure they do :thumbsup:

now you made me more chills.... :crying: although you keep smiling :biggrin1:
(or maybe the chills are from a new infection again :w00t:...? )

[mishb]

now you made me more chills.... :crying: although you keep smiling :biggrin1:
(or maybe the chills are from a new infection again :w00t:...? )

No, not another infection - you poor thing.
When are these going to stop :crying:

No need for chills on my behalf.
I had the best childhood and a wonderful very large extended family.........and.......I know my mum is reading this........my mum is AWESOME and she is the one that made us this way. She calls me her 'Hero' but of course, she is mine.

[Alysia]

She calls me her 'Hero' but of course, she is mine.

http://quotes.lifehack.org/media/quotes/quote-Arthur-Ashe-true-heroism-is-remarkably-sober-very-undramatic-61878.png


as you are doing all the time here :biggrin1:

[ingemlb]

Hi Inge, I am sorry for the "bloody" new stuff :sad: it is better to stay at the hospital as needed.
at least you have us with you, to pass the time.... :hug2:
Yes thanks Alysia. Being here as been the greatest boon. I am glad I ignored my doctor when he said he didn't want a patient who was part of an online forum. Anyway he had been having a very bad week with family and personal issues and since then we have had many many better chats :) Thanks for all your support.

[windchime]

Hi Inge, How are you doing with the walking today. Hopefully you are still progressing well. When are they doing the bronch? Since hospitals don't do anything on weekends I imagine it will be next week. You may have mentioned and I don't remember. Rest well and keep improving.

[ingemlb]

Hi Cindy. Walking is great. Hardly any twinges of pains. They had the choice of doing it on Saturday however the Respiratory specialist told me she prefers to work with her usual crew and Saturdays she is not sure who would be assisting her. So I figured a couple of days longer is not the end of the world. I am on the 1.30pm theatre list for Monday which could mean 1.30pm or any time thereafter depending on where in the q I am. But some time monday afternoon we will know more.
Been a bit tired today so been catching up on sleep. Also watching my food. The blood sugar suddenly spiked yesterday afternoon yet my diet is same each day so it must be the extra pred hitting it. Had to have another jab of insulin at night. All in all I am not worried about staying on here as everything that goes wrong can be dealt with immediately. I will have to get used to how to look after all this once I am home again. For my husband it will be good to have me home as he has too much running around to do when i am in here but he too didn't want me to come home only to pack up and head back on Monday morning. Don't know about you but I find it all rather stressful going for appointments. Even getting discharged. Will have been here 5 weeks so may need a removalist to get me out of here lol. It's starting to feel like home. And Melbourne has had a massive heatwave since I have been in here. I am very cool and comfortable. Then the other day there was a cold snap and thunderstorm. The food couldn't be better, feels like a resort not a hospital. And the staff are ultra friendly. Now that I have my own little suite I am extremely comfy. But yes... will also be good to get home. Inge.

[windchime]

LOL a removalist. I've never heard that term, but I like it. Made me laugh. As far as handling the appointments once you leave. Depending on their proximity to your home I wouldn't schedule too many in one day. I did that in the beginning and was exhausting myself by the end of the day. You're lucky (?) enough to have been in the hospital so your doc appts once you get out shouldn't be too bad. Remember to take it easy when you get out, you will tire easily as you aren't used to the extra activity. So it's important to pace yourself and rest when you are tired. Don't try to do too many things in one day. Good luck with the bronch and keep us posted. Hugs to you.

[ingemlb]

LOL a removalist. Funny how we Australians and you Americans all started off with the King's English and have similar racial mixes as far as Europeans and Asians go in any case yet the languages have diverged a bit. Removalist must be an Aussie term for a company who come and move all your stuff from one address to another to help you move house :)

Thanks for the advice re taking it easy. I have a very good guardian, my husband, who enforces rest on me when I am unwell. Personally I am too keen to get moving so he tells me to relax :)

Well I have been fed and watered now on nil orally. Wound up like some alley cat so asked for another valium. The thought of some scope wandering through my airways makes me very jumpy. I mean I am used to scopes in other places however the thought I still need to breathe with something shoved down the windpipe is a bit freaky so I am trying not to think of it right now but am so in a dither that I am glad the nurse supervised me when taking my insulin and meds as even though I KNEW KNEW KNEW i was supposed to reduce the insulin to 12 units (called nova mix) I managed to dial up the usual 20 and normally they only ask me have I taken it today she looked at it and noticed my mistake :( and here i was freaking out with such a long gap I would end up with a hypo yet ready to give myself enough to bring one on!!!
Will be so glad when this is over and hope it is the last test they will have to do for a time :) Inge

[mishb]

Try not to stress too much Inge......stress is not our friend

The scope is not too bad and you should be comfortably out of it that you wont even remember, or are you having a general aneasthetic and not a local?
Either way, it's all good and hopefully they will find the problem or the cause of the blood.

[ingemlb]

Thanks Michelle. I think it's a mild general :)

[mishb]

You'll be fine :hug2:
Oh, and remember your spoons ........or Dennis will have to remember them for you so that you don't try to do too much :flapper:

[ingemlb]

Good one Michelle. I have by now tonnes of unused spoons LOL not much trouble I can get into lying in this hospital bed :)

[annekat]

BTW, we in the US call them "movers". Haven't a clue what they call them in the UK.

Most of all, I understand your anxiety about the bronch and have never had it done myself. I hope to goodness that it goes smoothly, that you are sufficiently sedated to make it fly by without incident, and that what they discover is not overly alarming and something that can be easily dealt with. Best wishes!

[windchime]

Inge you must not have taken the valium yet when you last wrote. I hope that you are all relaxed and resting well now. You will do fine with the bronch as you will be asleep. They make sure you can breath and in the end you will know what's going on down there. Rest easy.

[ingemlb]

Inge you must not have taken the valium yet when you last wrote. I hope that you are all relaxed and resting well now. You will do fine with the bronch as you will be asleep. They make sure you can breath and in the end you will know what's going on down there. Rest easy.

Thanks cindy. I had probably just swallowed it when I posted however I am not as calm as it usually makes me. Still "RACY" lol.

SO NOW AFTER DAYS AND DAYS OF COUGHING UP COPIOUS AMOUNTS OF BLOOD STAINED MUCUS ON DEMAND WHEN NEEDED BUT SPONTANEOUSLY WHEN LEAST WANTED ..... today I wake up.... hardly a cough. No rasping in my chest. No wheeze breathing and the only mucous coming up is clear with maybe the odd tinge. I CAN'T believe it but I guess its the Prednisolone kicking in. So ... I am expecting when I get out of that procedure they will tell me my airways are squeaky clean which has been the result of nearly EVERY TEST AND BIOPSY DONE and even when they found inflammation it was called NON SPECIFIC.

However the Sputum test came back last night and my Rheumatologist told me it showed : "No cancer (didn't even think of that one) no bacterial infection but did find blood" So we do have evidence that blood was coming up and I guess even if nothing shows up they will have to keep that in mind and that by now the 40 mg of Pred are clearing the airways. On retrospect may have been better to have the examination on Saturday. Anyway. We'll see!!

The same happened with the Nasal Biopsy. By the time I got there I had been a week on Pred and my discharge was changing as I reacted very quickly to the pred initially. So my guess was that it was working on the sinus' and the biopsy came a bit late. However I was told these biopsies are very tricky to pick up the right spot to confirm the Wegener's is doing it.

I'll be in touch in a few hours. It's 10:30 am here now. So 1:30pm the Theatre list starts. Thanks all for your encouragement. I will try to calm down but in the past have found that task almost impossible to do. How does one calm down when one is all of a fizz? In fact the word "calm down" increases the blood pressure because it makes me feel like I am in control of something that I can't seem to control :)

[windchime]

Oh Inge you should be nice and calm now since you are probably sedated. Negative biopsies in the sinus are not unusual. The lungs again they have to "hit" the right spot. I got an inconclusive on my second lung biopsy. More importantly you will hopefully get the an answer to what was causing all that blood to be coughed up. Look forward to hearing the results. Enjoy the drug induced bliss. :flapper:

[ingemlb]

Thanks Cindy. The drug induced bliss didn't last long enough. They put me under of a sorts and told me I would forget everything afterwards but I can remember lots of chit chat and trying to listen in and hoping they would give a description of what they were finding. Then suddenly it was all over. I was wide awake in theatre and asked the surgeon what had she found and she said nothing to worry about but I will see you in recovery because you will forget everything :) well I didn't actually. Anyway she came into recovery told me everything looks HEALTHY. I am so used to hearing that now that I don't even flinch. She found mucous and blood but no idea where it came from. She did some biopsies just in case but has ruled out airways involvement. So either this Wegener's is very sneaky hiding in spots she couldn't see or I had some massive bleed (maybe whilst asleep) from the sinus into the lungs and it has taken a few days to cough up the bloody mess. I am dumbfounded but of course VERY happy to have healthy airways. So ... I guess they will wait on the biopsy results before chucking me out but I might be going home tomorrow or wednesday :) Inge

[mishb]

I'm glad all appeared to go well Inge.

Lets see if we can get you home before you catch something from the person in the room next door, and they make you stay longer :flapper:

Have a good sleep tonight and hopefully things are starting to look up

[windchime]

Yay no lung involvement. What a relief that must be. The sinuses when "turned on" do send a lot of stuff down into our lungs. So that may be the culprit after all. Just happy that you don't have it in your lungs. Have a great day or what is left of it over there. Just beginning mine here. 8:30 AM. Yawn. Been up since 7:00.

[annekat]

I'm glad things look fine down there and that they were thorough enough to check it out. I hope they get the biopsy results ASAP, and you are given the all-clear to go home!

[ingemlb]

Back to exercise... In the hospital it was easy to every now and then do a few rounds of the Ward. It was a big ward and long corridors so a couple of rounds was enough a few times a day. Since coming home I don't seem to do as much as I walk from my lounge to the kitchen. Have not felt up to getting dressed and going outside. Also I am a bit worried, previously when I went for walks if I suddenly developed bad pains (happened often) my husband would have to get the car and pick me up. So I joined a gym and that seemed easier as I could stop any time and get in the car and head home. However the last few visits to the gym were ultra scary I got so much pain I didn't know if I could make it back to the car and several times I got the shakes so badly it felt like a hypo that I headed to the nearest shop and bought something to eat. However that was before steroids and diagnosis.
So now I am on Prednisolone and Methotrexate and not all that excited heading to places where there are lots of people congregating. I would rather be able to do some exercise at home.
We were wondering about buying an exercise machine. At the gym I liked the treadmill the best as you can walk slow or fast and raise it for an incline whatever you are capable of doing. When my knees were too sore I used a reclining bike. I want to buy a machine I will actually use and that is not too tough on my joints. I want to put it in my lounge room in front of the TV so that the time goes quickly.
However I am also wondering if this illness starts getting worse and I can't really move that much will it be a waste of money.
So would like to hear from others who have home exercise equipment and what they would recommend as a good option. Thanks :)

[drz]

I would ask for some physical therapy where they do different exercises with you while they monitor you closely and help determine what type of exercise is best for you and what you are like to continue. This also helps you learn what you can do safely and how different exercise affects your body. I found out that for me, tai chi or Qi Gong, recumbent bike, and treadmill were best exercise options.

[ingemlb]

Thanks drz. You are right. I will have to get hold of a Physiotherapist who understands the issues. I have long been interested in tai chi and I do like recumbent bikes and treadmills. But as far as home equipment I can only buy one machine (not really enough space for more) so still deciding on the bike or treadmill. Probably go for the treadmill. I found a really great fold up one so may try that out. There is a place close by where you can hire them so that may be the first option then if I find I use it regularly go and buy one.