Legs come, legs go

My legs stop working unless I take 5mg Prednisolone a day. The problem was that I was only prescribed tablets for the "emergency" treatment of 1 or 2 weeks after which I would stop taking the tablet. On the third cycle of that happening this year, I become so loathe at the idea of losing my legs again that I didn't stop taking them. That was June sometime. It took a little while but by this month I was ready to tackle all the medical appointments that I had let accumulate since before Christmas last year. I WON'T DELIBERATELY PUSH MYSELF INTO RELAPSE any more when I know for sure that it is going to happen. It's not hard to tell when it is going to happen for sure and going out for any reason for even tiny amounts of time has been enough to cause payback all year and I don't see why I should have to line up for it especially if these are my last days....relatively speaking. I'm not inclined to do it for anyone else any more either and I think that is the point when friendships reveal themselves as "fair weather" friendships. People question my love for them possibly because I am not prepared to pay the price of putting up with discomfort which to my body is akin to stress. It could be just the cold wind that my body hates or it could be the energy of "talking" or the light intensity or the fact that I have to wear clothes of a certain calibre. Ban the bra! I say. When I take the prednisolone I feel more alive and more able to distract myself from environmental stress and yeah, my legs work and I can think more clearly and feel more in control because of it. I have not had a nice time of trying to imagine myself any more sick than I already am so now the pressure is off and I can enjoy myself within my limitations. I can potter around the house slowly getting things organised and I can make it to appointments with far less dread. I've had my hearing aid checked and adjusted and I changed providers for the better. I had my eyes checked for everything in a particular effort to find a reason for the "eye headaches" but there was none. I had a home sleep study which I have not got the results of yet and a lung CT which I have got the results of in a watered-down fashion - the nodule has changed!

Now that the news has digested I have more questions but on the day I was just as keen to secure a long-term supply of prednisolone (before discussing the lung lumps)  so that I could take it daily and keep my legs working which I did. She agreed to daily.  She obviously does not want me to lose my walking again either but the only thing she said was that we will try to lower the dose as soon as possible. But now I want to know if taking steroids makes lung nodules grow? All the steroid sprays this year and it grows and none last year and it doesn't? I have not researched this so it is just my thoughts. If I think about it from another angle, I could ask, what is likely to grow faster in the presence of steroids? The answer to that one is fungus. Fungus has been on my mind since the antibiotics seemed to trigger that familiar itch as well as the most worrisome burning mouth I have had all year. It was so intense.

Living my life is kinder to me when I take both the Targin pain killers and now the low-dose steroids as well. I spend too much time feeling ill, and in pain even with these bandaids in my opinion and I do have trouble with side effects, although fewer now that my body is getting a consistent dose. I do wonder how long it will last as being something I am grateful for. Back in my high-dose steroid days (the Crohn's days) the benefit seemed to wear off over time (years). And right now the benefit does not feel as good as it did because I can still get that lead legs feeling that I once used to ignore. However rather than "poop-out", it could be the fact that I have been taking both Amoxycillin and Clarithromycin antibiotics because there is a chance that the lung nodule change is just the result of an infection. But her prescription was only for a week and that seems such a short time to try and rid me of an infection that has been causing lung-snoring noises, sinus problems and a  cough to clear the mucus all year. I'd like it to prove that it is not asthma or COPD as she diagnosed already this year and it is a flare up of say mycoplasma pneumonia (a past infection of mine) by getting better while I am on the antibiotics, but I feel terrible while taking these antibiotics. I've actually finished taking them but I still feel bad.  I was feeling so much better on a regular dose of steroid alone, but I wouldn't even know I am taking an energy-giving steroid right now because I feel yuk and "coma sleep" kind of tired again and if anything, it seems to have stirred up the coughing and lung rattles and mucus squeak sounds even more. I wonder if any of that got picked up on in the sleep study? The extra sore throat I have would not have been noticed by anyone because no-one has actually asked me about my symptoms. I've also been feeling feverish again and I've complained of mini-fevers coming and going all year too.  Needless to say, I hate antibiotic treatments.......even if they work long term to reduce an unproven bug load (which they did in 2012).  But this little one week application won't even do that. My gut is now trying to pay me back with my stomach not letting my food go down.  I am taking a couple of different kinds of probiotics and prebiotics in an attempt to avoid candida and thrush but that has not been something I can count on working.

Anyway, it is starting to sound more like lung cancer as I write about coughing and squeaking and even fevers so I think I will stop writing. It feels like I've been threatened with lung cancer all my smoking life and even when I stopped for 2 years the medical people still treated me like a smoker so it is sort of like "you deserve cancer you idiot". It's nice to know I may get a chance to keep everyone happy in their illusion of life's predictability. The Lyme and CFS and fibromyalgia and crazy autoimmune markers and 100 symptoms (yes I've counted) will be forgotten about if I have cancer. That worries me.  My life and death is now for the purpose of validating all the promising research into multi-systemic chronic disease and to have lung cancer put down on my death certificate will ruin everything!!!!

Lively me and how I got here.

So do you want to know my secret? Steroid sprays. Rhinocort  for the nose and Symbicort for the lungs.  Who says that small amount has no systemic effects? I have not been so sharp-witted and marching up and down the house catching up on housework for a long, long,  time.

I still have the pain but it is a bit less I think because I forgot to take my Targin one night.

As for the leg calf bulge, it must be muscular because I've been getting cramps in the same muscle and neither magnesium or quinine are helping.

As for the weight gain,  it seems I have a type I (i)  metabolism since menopause according to a survey I completed.

Thank God for Steroids

If anyone cares to take note of the fact that I have always responded favourably to steroids, then I should be able to get back some quality of life.  I had to beg to get 7 days treatment.  The pain specialist might be interested to hear about it anyway assuming it is preferred over higher doses of opiods. UPDATE: no, he did not use steroids in pain relief although he said they would make me feel fantastic.

It is day 3 of taking 5mg prednisolone and despite hardly getting any sleep last night because of the so-called Telstra 24/7 service (another line problem wrecking my Internet connection), I already feel so much better.  My heart was not palpitating every step I took, my legs do not feel as heavy as lead, I am not breathless when walking around the house/yard and I am walking at a normal pace again.  It feels like a miracle to me even though it does not help my aching legs.  I have not been able to pick up even a cup of tea without pain in my arm, probably from my shoulder but today I noticed it was feeling much better too.

Unfortunately I did have to spend more energy than I intended because Ange and family came to give me a belated birthday present.  It was like being invaded by bedlam.  I much prefer to see my grandson on his own and I wish they would not bring their dog to intimidate Milo.  She shook like a leaf the whole time.  Esha would not leave her alone either.  She just wanted to cuddle her all the time.

Cal came over from next door to give me a paw paw from their tree and I gave her lemons.  She is usually housebound herself.  Telstra finally booked me in for a tech visit on your birthday Mum in the evening. So there was lots of people contact today as well as an iherb delivery.  I got my almond flour and CoQ10 and my favourite supplement NAC Sustain.  Actually D-Ribose (ATP energy fuel) is my favourite but I can never afford it in the powder form that works.

I cannot play my game on the Internet for the third day in a row so maybe it is going to work out OK being busier than usual until it is fixed.  Typing more blogs is another side benefit for you guys.  I can press the publish button when the Internet comes back on again.

Because of this wonderful steroid response, I am now less worried about getting to the pain specialist next Wednesday and when I found out the lung scan will only take 20 mins I booked in for that on your Monday birthday too.  I hope it is a good omen for a shrunken tumour/nodule.

I will probably catch up with Jan and even Brenda over the weekend.  Brenda has to come to deliver the Avon although she has already cancelled once.  Scoot wanted something too - Rose spray for the car.  I like the Pot Pourri better myself.  The toilet room has been waiting to get hold of some for a while and for some reason the smell does not irritate me like all the shop bought ones.

Maybe I will get my old iMAC on the weekend too.  Brett's Kitty is coming down to Brooke's place to work out wedding stuff with her while Brett camps at Inskip Point for a buck's party.  You met Brooke at the PW Tavern when she was thin and maybe pregnant.  She and Nick have a lovely looking toddler and they are getting married soon (or not so soon) so no doubt Brett will come down for that.  Kitty is maid of honour.  I think Brett is looking forward to "no women allowed" on the campsite.

I have another story to tell about professional cleaners and Scott.  I saw Scott last weekend when he picked up the table from Bunnings for me but I am not going to type any more.  I am sorry about Auntie Marie's death this week.  You timed your last visit to her well.

I feel like I have been dismissed again #millionsmissing respect and dignity

Many of us feel that the establishment has often silenced our perception of what is happening in our bodies.  I felt like that today.  I went to the doctor.  My lady doctor.  I felt too ill to go but I hoped my note would keep me on track and I had run out of pain killers so I had to go before I would go into withdrawal

I had no wheezes or sounds in my lungs so I guess she did not believe me about months of that.  But I did tell her the Rhinocort worked.  She did not seem to object to me using it again but it is no longer available on prescription.

I told her I felt feverish, she did not take my temperature.  

I told her I had a sore throat and that they had Crimson Crescents (see previous post for photo).  She said they were normal and that it is lymphatic tissue in that area.  In fact my whole throat is normal  (even though it is sore and I cannot sing any more).

I told her that it hurts a lot to lift anything with my right hand.  She did not comment when I said I wanted to talk mainly about my mobility today.  I guess I told her I was getting breathless and/or dizzy but I can't really remember about that.  It was pretty obvious there was something wrong with my walking but she did not even ask what was wrong.

I asked for the neuro surgeon report but she said it was marked confidential but she could read it to me.  I let her read it, waiting to hear the words he spoke to me - that the arachnoid cyst on my spine is the initial cause of my leg pain and the pain between my shoulder blades.  It was not mentioned.  No wonder GPs get a false impression.  The letter came across sounding like I had gone in looking for spinal surgery and was recommended against it.  It was me who baulked at the idea of spinal surgery and asked for a delay.  All he said in the report was that a review MRI in 12 months was suggested.  I paid for that private consultation and I am concerned about the strange sensations I get around my back and rib cage, from tingles to itches to stings especially back right.

I told her I had palpitations when I walk and that I was taking Deralin again to help which it does.  I asked her if I could put up the dose because they are bothering me still.  She did not answer that but I think she went to consult her computer. She certainly did not take my blood pressure.  She did not give me the OK to put up the dose so if I have a heart attack you take note of this.

I told her I felt very ill, that running out of energy could make me feel nauseous and that I was seriously considering getting the mobility scooter back.  She just accepted that without comment.  I asked for a Parking sticker.  She did not answer but she asked about where the scooter was.

Why do you #putoutyourshoes on May 25th?

I told her I was really ill and am no longer able to recover from an outing and more or less begged her to do something.  She asked what.  I told her I thought I needed antibiotics and she said there was no indication for that.  We talked about negative mycoplasma Pneumonia blood tests being unreliable and I got a bit narky and so did she.  I did not back up anything I said with the findings of Dr. Kazuhiro Matsuda because I could not remember his name to tell her.  Do you know how hard it is to think fast when I am like this?  I am finding it impossible to even stick up for myself.  I am just as likely to go into a trance and stare for a few seconds.  It happens all the time...before I went on pain killers too if you are wondering.  

I asked what I could try and then suggested steroids. She said something about my steroid use in the past and said things are different now and I couldn't have them either but then she asked ME how much and for how long do I want them.  How would I really know I thought to myself?  I was grasping at straws when I said 5mg a day for a week.  If I was being treated for Crohn's as in the past I knew it would be a whole lot more.  But she agreed to it being an appropriate way to treat this relapse.  I don't know why.  I also know she would not have suggested it if I hadn't have broken down and said "what am I going to do to try and get better?".  I am just hoping it gets me well enough to make it to the pain specialist next week.  Why do I have to fight so hard just to try and maintain what quality of life I have left?  The nightmare is getting worse Mum.

I told her I needed a diabetes A1C blood test because I was overdue.  She asked what my blood sugar was like.  All I could tell her was that it was 6.4 when I took it yesterday half an hour or so after half a breaky biscuit.  It seemed like fine figures to me but then we got into another awkward discussion about patient blood glucose monitoring.  The Australian Doctor magazine suggested that those with diabetes 2 who are not on medication should not even monitor the blood sugar level at all let alone daily.  I did not want to tell her I read it on the official doctor mag so I was vague with my reply about the Internet but I told her Dr Craig did not want me to have a machine.  She obviously disagrees with the AMA and does not even know it!!!  I disagree with the AMA in that regard too (and plenty more).  Anyway I have not seen a high reading for months and months so I am expecting a good result from the quarterly average.

Look what got published since.

Dr J had a go at me again for going to too many doctors - meaning the one down town that gave me my results for the lung scan and my LLMD (in Maleny she still says) who I have not seen for years now.  It was mainly because she did not remember what I was talking about when I brought up the lung nodule and she used that as an excuse for not having an answer on the tip of her tongue about what this lung nodule is in need of.  I told her I need a rescan because I was due for it.  She blubbered about not ordering the original CT (hi res) so that is why she felt out of depth about it but I reminded her that she said she would have her records up to date about it twice now. Otherwise I could have got into see Craig sooner.  And for the second time I asked her if she wanted me to go back down town to the original doctor?  She said no.  I then looked at her in the face and said "None of this doctor stuff is my fault". No more said after that.  She looked up the records and wrote out the referral I needed.  I am not planning on making an appointment at Pacific Radiology until I feel better and next week may not be good because I have got two things on already.  One is the pain specialist and the other is a social work visit.
And I have to fit in poor Connor who has a belated birthday present for me and who I had to stop from coming due to his virus and my relapse.

Fukuda vs Canadian vs International symptom variation confounding research efforts.

I had to walk further than I thought today because the local QML was conducting a procedure for the next 45 mins and they suggested going further up the road.  You could have walked.  I took the car.   There were other blood tests and a urine test but not the NK cells or CD57 that I mentioned other people were having.  She did not put them on the form and by the look on her face I would say she thought it was over the top.  What I saw were just blood tests I have seen done on me over and over but then are ignored anyway even if I do have elevated liver enzymes or something.  However she said I had to have that blood test before I started taking the prednisolone I think it is.  I know from past experience that it will be likely to cause insomnia but hopefully only because I have a false sense of energy which I will have to be careful not to spend until I need it to get to Dr Georgius etc.  I plan on doing as little as possible but I hope I have enough real energy to get groceries and other essentials.  I'd like to dye my hair.  I still have not got my birthday hair cut though so I hacked my own fringe (too short).

My temperature was only 36.1 this morning but it was only 8 degrees C when I went out to post your birthday present Mum.  37.4 last night. 36.8 right now.

Update: June 2nd - All blood test results labelled "No Action Required"

Journey on Prednisolone


You know the story - I took Prednisolone for a week and got back my energy so I took the opportunity to visit number 2 son who had become quite emotional about having to live on his own and only see his son every second weekend.  I had a good time except for the last night when he invited mates home.  I was still restricted in what I could do but I certainly did a lot more than I had been.  I had mini crashes after going shopping but I was OK again the next day and luckily I was given the bed since most of the time he sleeps in the lounge with his computer and TV and playstation.  The lounge folds down to a bed like a footon.  How do you spell phooton? Futon? Two of them actually. Futi.  Anyway here are some of the photos I salvaged off my hard drive.

 Yes I know they have red eye but I edited the ones downloaded on to his computer.  His iMac.  I covet that iMac.  But as for my computer, I get a boot screen back in some fashion one day and lose it again the next and I have lost data but I am recovering what I can and uploaded these while I had the chance.  I had a drive to check out the state forest campgrounds  in Brooyar State Forest but they were not suitable because the toilet block was up a hill and I just would not feel comfortable camping there for some reason.  Not that I have any immediate plans to go camping unfortunately - other than in my backyard should the Department painters come to paint inside this unit which could be announced any time.