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"

I am not very well but there are #millionsmissing not just me

My temperature is 37.4, that's all.  Relapsing and remitting mini-fevers for 20+ years.  My basal temperature is about 36.5.  I'm dizzy.  I'm in pain.  Lead legs, hard to concentrate, light sensitivity, sore eyes, breathlessness, zombie mode, placid, sit and stare, don't want to move, nauseous, don't have an appetite, neck pain, surprisingly not so sore neck glands though, sore throat, burning mouth, aching legs, hurts to lift a cup of coffee with my main hand, headache, reflux, delayed gastric emptying, aching fingers, burning soles, tingles and strange sensations right hand side of my back (but that's probably the arachnoid cyst on my spine), strange wheezes cleared with a productive cough when I breath in, squeaks in my throat when I breath out, shoulders relentless, forget what I am doing, slow to make a decision, stopping and doing nothing but exist for a few seconds while waiting for brain to tell me what to do next,  slow to process information, good for nothing but cuddles.

Crimson Crescents

I've got two of those, one on each side.

Crimson Crescents Facilitate CFS Diagnosis
By Robert B. Marchesani

Infectious Disease News, November 1992

MINEOLA, NY—A new physical finding in chronic fatigue syndrome patients may finally give clinicians what they have only dreamed about a clinical way to diagnose the disease.

Burke A. Cunha, MD, discovered what he called crimson crescents in the mouths of 80% of his CFS patients. After the word got out, Cunha received calls from other parts of the country. Physicians began telling him that they also were finding the crimson crescents in their patients once they looked for them.

"When we look inside somebody's mouth, infectious disease doctors and internists instinctively go right to the back and look at the pharynx. When they do that, they miss these crimson crescents because they are on the side. People have missed them for years," said Cunha, MD, chief, infectious disease division, Winthrop-University Hospital, Mineola, N.Y.

For the first time physicians may have a specific indicator to look for on physical examination of chronic fatigue syndrome patients, not unlike the bull's eye of erythema chronicum migrans in Lyme disease patients.

"If your patient has crimson crescents, you now can say it is probably chronic fatigue syndrome," Cunha said.

Cunha' s crimson crescents are located on both sides adjacent to the back molars. (See figure.) They are present as a crescentic membrane of tissue that points toward the uvula. During a tonsillectomy that membrane is removed, which is the anterior pharyngealpillar. This area is crimson-purple and looks like a crescent moon chopped in half because the base goes into the tongue. The top of the crescent bows in toward the middle such that each side mirrors the other, Cunha explained.

When someone has a tonsillectomy, the borders of the crescent become less distinct and the margins are not as sharp. They are located posteriorly where the tonsil would have been before it was taken out. So even patients who had their tonsils removed still present with the crescents but the location and appearance are modified, according to Cunha.

They are always bilateral, and they can be very bright, which is why he called them crimson instead of purple. These crescents last for months and gradually fade as the disease goes into remission. When the patient gets sick again, the crescents usually get redder.

"In chronic fatigue you always find the crescents alone. The rest of the pharynx is uninvolved," he said. There is a small portion of the normal population that may also present with these crescents. "If you get a patient with a sore throat in the office, he or she can have crimson crescents, and the back of the throat is red," Cunha said.

Cunha found crimson crescents in 3% to 5% of non-chronic fatigue patients who presented with non-specific sore throats. Patients who present with mononucleosis or Group A strep do not have the crescents, nor do those with cytomegalovirus pharyngitis or the common viral pharyngitis, according to Cunha.

After seeing many patients in a chronic fatigue study center at Winthrop Hospital, Cunha has his own beliefs about the etiology of CFS. "I believe that the virus that causes chronic fatigue comes from young adults or children who give it to adults. The young child recovers from the illness but the young adult gets a sore throat and some go on to develop the chronic fatigue in adults. I do not know why, but that intrigues me," said Cunha who is also professor of medicine at the State University of New York at Stony Brook Health Sciences Center School of Medicine.

Cunha is trying to grow virus out of these crescents in an attempt to discover their cause. "The problem is when anyone does antiviral throat cultures, clinical labs are not equipped to grow HHV-6. In addition, with viruses you have to go deeper than just the surface because they live within cells. So my next step is to biopsy the crescents," Cunha said. Since there is no test for CFS, the physician must infer the disease from other sources.

"But the most consistent lab evidence that we look for are elevations of coxsackie B-titers and elevations of HHV-6 titers in combination with the decrease in the percentage of natural killer T cells," Cunha explained.

"If the patient has two or three of these abnormalities in our study center, then he or she fits the laboratory criteria for chronic fatigue. Nearly all patients with crimson crescents have two out of three of these laboratory abnormalities," he said.

Cunha's finding is especially promising for physicians who practice too far from a lab to get such evidence. "If you are a physician out in the middle of nowhere and you can't get HHV-6 titers and you can't get the natural killer-cell percentage, then the crimson crescents may be the only way besides history that can suggest the diagnosis," Cunha told Infectious Disease News.

This article was reprinted by The CFIDS Association of America, Inc. publisher of The CFIDS Chronicle 800/44-CFIDS by permission of Infectious Disease News. Volume 5, Number 11, November 1992.

http://www.immunesupport.com/

Senate Inquiry into Lyme-like Diseases in Australia Interim Report

The Interim Report presented before the double dissolution of the Senate

I honour these people  today by reading the submissions from those who have already died but got their story written down in time:

• Pam Carmichael with help from Maree Kratzer and others
• Scott Chant

Pat Blankenship, 1949-2016, RIP

On Monday, May 16, we lost another friend to Myalgic Encephalomyelitis, Pat Blankenship. She was just 67.

Late Stage Lyme

yield to our demands, you are no longer in control, obey or die

(aka if you take another step I will make you puke)

The heart of Lyme - Sudden Death

"Although rare, sudden cardiac death caused by Lyme disease might be an under-recognized entity," according to researchers who describe their findings from an autopsy study on 5 case patients who died from sudden cardiac death and were found post mortem to have Lyme carditis. The cases are discussed in an article entitled Cardiac Tropism of Borrelia burgdorferi: An Autopsy Study of Sudden Cardiac Death Associated with Lyme Carditis, published in The American Journal of Pathology.

Read More

So happy to catch up with Cohen

I picked up Stacey and Cohen from the Caloundra bus interchange at 12:20pm and because Stacey was hungry we headed straight to the Military Jetty store. I didn't eat and neither did Cohen eat his nuggets because he wasn't hungry. But he very rarely is since starting Ritalin which is the second thing they have tried. The first was Vivanse? Cohen got expelled the day before this holiday of theirs which did not coincide with the school holidays. Apparently he spat at a teacher. He has a foul mouth and it just rolls off his tongue so easily in amongst the conversation. There was a medication change but what Brett has not told me was that things are not going very well for Cohen and the new school at all and this expulsion wasn't the first. So I can no longer assume that no news is good news.

After sitting while we talked and drank at the military jetty store we walked over to the pavillion for a cigarette and this first video is how Cohen filled the time.  Because I could not hear a lot, I didn't even hear most of the swearing during the day and the general mood of the day was actually nice and easy going so he seems just like the same old Cohen to me.  Certainly not naturally evil like B's other half seems to be suggesting.  There were no major altications in my presence.  I think I made up that word but he did have a rather graphic description of B and K having sex.

31/70 main st pialba 4655 is where they live. The lease has just been renewed for another year.


Just before this  video, I got bad pains and abandoned the car the moment it was parked.  On returning to the table where they were sitting I hear, "Did you poo yourself Nanoo?"  No, I made it in time but it was so hard to walk to the toilet block.



When he was up the beach a bit, I did get to ask Cohen who he liked best choosing between the first and the second live-in girlfriend.  He picked Paige which was a surprise to me.  I now know why he cannot live with Brett.  He does not like K.  Although B thinks that she is helping him become a better parent, I am now thinking that maybe she does not see the nice side of Cohen.  Stacey says that K does not like Cohen.  She sees a problem that needs fixing perhaps.  And she likes helping and advising maybe.  If Brett sits back and leaves the work to the women, then perhaps Mum is the best person for him even if she swears and carries on.  At least she loves her son!  The psychiatrist recommended the real mother over the real father and Stacey says that B is lazy and is happy to have K as a go-between.  St does not seem to care what Brett does (she is not emotionally attached or anything) except when it comes to Cohen and she wishes he would be more involved because he has not had Cohen enough.  It makes you wonder who is telling lies.



I kept a Rhinoceros Beetle skeleton in a box for ages waiting for the day Cohen would open it.  Today was that day.  He would not even touch it.  He recoiled with a ewww look and St said he does not like any bugs so I have been trying to desensitise him ever since..... sending photos of it to Stacey to show him and stuff like this - http://science6brhinocerosbeetle.weebly.com/interesting-facts.html

The Rhino skeleton is well and truly mangulated and gone with the rubbish truck now as in post dated addendum on Friday 20th May

More photos of Cohen Day

Autumn health rave and Birthdays

I did something I've been putting off. I've really gone downhill in the last 12 months. I knew I was pushing it going out for my birthday when I used up my energy just hurriedly walking to my ride out the front. Due to brain fog I had to come back to the house to get something and then back to the car again and by this time I was walking as slow as.....someone with congestive heart failure....was going to say an 80 year old but that is totally wrong....my mother is 87 in a couple of weeks and she would not have any idea what walking with heavy legs, heart palpitating, and breathless at such a slow pace that you are embarrassingly obvious is even like.  Anyway I phoned Centacare for domestic help.

I'm already with Centacare for lawn mowing but I filled in all the paper work today for this stuff. I'm pleased to find out that they do one hour blocks instead of a 2 hour minimum. That's easier (and cheaper) for me to tolerate. Just the floors is fine for starters. I can still tolerate being upright so I am not bed bound and I can walk slowly but not for long before I know I am doing damage.  I need the Deralin again.  Toilet and back is about it but I am used to doing everything tiny bits at a time anyway.

Also am now trying to decide about the mobility scooter. Would you believe that it has been on consignment in a shop for 2 years and it still has not sold so I guess I can just bring it back home for a delivery cost (which is nothing to sneeze at) but I remember not using it much you know. When you really need it just to get out of the house, you have to have enough brain power to operate it and be able to weather the elements and have enough energy just to get ready to go out on it and that makes it harder to use than a car. I can still drive so I am seriously considering taking it to park at a nice view on such a nice day but at the same time I know I would be better off just going back to bed or playing my game.   All the storage problems I had with that scooter, do I want that again? Even the hassle of charging it up all the time? I can't fit it in my car so it is no good for going shopping and using it to go shopping might be an outing up to Pelican Waters but do I really need to add all that extra time to something that can take less than half an hour if I had the energy.  Saving energy is the name of this game.  Going into deficit like I did on my birthday is asking for relapse which could become permanently established as the "new normal"   We had April showers a lot and again.  It is either too hot out there or raining. The scooter decision, it can wait.

My brain is still good enough to entertain me; thanks my lucky stars. Take away my brain and I might start getting depressed again. I can live with the forgetfulness but not the inability to engage in conversation or pursue some online reading/research. If I get back there, please someone come and drag me back to Dr Andrew because I don't know where else to go. But first I will have to cash in some Super (again). Better do it now because if I get any further into bed bound knowing me I will just lie there day in and day out because the thought of pushing myself to even get to a doctor is all too much.

I should see if he will treat this chest thing that is NOT mycoplasma pneumoniae according to the traditional tests. I should, I should. I should...but how? And I reckon I must be nearly due for another hi-res CT scan to check on that lung nodule yet no-one has made any attempt to kill off what I reckon is a stealth infection apart from that one short course of antibiotics that gave me profuse watery diarrhoea.  If I was a doctor, I would have given myself more of a chance of seeing at least a reduction in that lung nodule size through the use of steroids if not more antibiotics but if it is still there I will be going to see Andrew even if it kills me just so I can prove it is not a tumour before they start doing biopsies and shit.

I guess what this post is about is acceptance that I need help.  I still don't want it and I really don't want people coming in here and "assessing the situation" and making notes about.....me.  I did not like it last time.  They watched me disintegrate psychiatrically when the antibiotics crossed the blood-brain barrier last time.  At least I am more aware of what could go wrong now and my treatment will have to be slowed way down at the first sign of anxiety.  But right now, I'm as placid as they come.  I certainly don't sit here worrying about my future but I still have to consider it from time to time which means climbing out of the one-day-at-a-time approach which is relatively comfortable now that I look after myself.  I'm really glad I persevered with obtaining pain meds officially.  I have some measure of comfort for several hours every day but that damn Targin does not last 12 hours like it is supposed to.  Seven maybe?

Something good healthwise happened in April, the migraine things I associate with my back being "out" (which it probably isn't since nothing I can do posture-wise including some convoluted positions, does not seem to help get rid of it even if it shifts the pain/pressure) disappeared all by itself.  The physio appointment made it worse.  So I guess that headache broke the record since it went from before Christmas to early April.  It's not really gone but it is not being provoked simply by moving my arms within my "safe" range of movement.  I am not ready to walk around with my arms above my head though.

All sorts of things happened healthwise in April.  Actually, they haven't stopped happening since April 2015 when I had high blood pressure, hives and high blood sugar.  Quitting egg white, sugar and taking Deralin/Inderal solved those problems but then I had major problems with gastroparesis which I came to recognise required a change of diet which unfortunately does not bode too well for the diabetes so it has been a constant juggling act ever since.  That is pretty typical of my life now.  Juggling the effects of medications and their withdrawals with the state of my gut and head.  Serotonin sensitivity made itself even more obvious the more I took pain killers particularly Tramadol but I was glad to have the Tramadol to act as a quick and dirty relief for the Serotonin withdrawal head zaps on movement so it was a life saver if I forgot to take my anti-depressant and went into withdrawal (within hours).  When I went on the stronger pills I thought it would be a good idea to cut down on the anti-depressant again but they don't make half-strength capsules only a liquid suspension which is fairly unkind to my reflux.  The year had already seen me cut down and make the switch from Effexor to Lovan in an effort to shed some of this weight but it only worked so much in that regard and my pain levels have been much higher on Lovan compared to when I was on Effexor, and the forgetting to take my tablet withdrawals were even worse on Effexor.  Maybe there is an anti-depressant that is somewhere between the two that would suit me better but trial and error is not a fun way to find out.

I've slept a lot of May away so far.  Been in recovery mode which means not doing much more than playing Wartune and attending to the doggie.  And when you are forced to bed, it is nice to have my toes licked by Milo.  I still get the giggles

My 61st birthday was the start of yet another relapse but at least I got out to the RSL for lunch and I met a couple of new people.  Lymies.  I was not feeling very well this time last year in Hervey Bay either but I had several days of holiday before it to wear me out.  This year I have been able to get out way less without suffering a relapse.

For some reason, this year I wanted to be with people but so many did not turn up.  Brenda and Sharon had other things on.  Ange got side-tracked and forgot at the last minute.  Rob piked because of the rain? Shazz did not show.  Karen turned up late and Kerryn from Beerwah just popped in with her hubby to meet me.  She cannot sit so that is why she did not come for the actual lunch.

Cohen had a birthday in April too but Brett made no attempt to include me.  Granted, they only had him for a couple of hours after school but a quick phonecall would have been nice now that skype and facetime calls seem to be too much trouble to organise for Brett.  I sought out Stacey on Facebook so that I could at least find a couple of birthday photos of Cohen.  We have not been on each other's friend list for over a year.  He is 8 years old now.