Cardiologist and Marina and S back

for a week with no money even to drive the car anywhere.

Met Marina at a Bulcock Beach Café for three quarters of an hour because she insisted I meet this guy she was meeting up with.

me:  The cardiologist trusts the ECHO done at the hospital by a specialist done in 2009 which did not show a pulmonary stenosis rather than the opinion of someone working for Imaging and X-ray so he is not concerned that I have a pulmonary stenosis.  I'm in the clear again.  On again, off again.  He said I have two types of palpitations - both benign but uncomfortable and I should take the beta blockers on an as need basis which suits me.  Sinus tachycardia and extra beats.

 Sent at 19:25 on Wednesday

 Debbie:  well thats good, 

He's Coming Home (again)

 Last time I saw him he told you that "Mum's pretty good" or some such evaluation of my health.  It was a good day relatively speaking in the middle of a run of gut complaints.  I've been much more miserable with the gut stuff mood-wise.  There seems to be a connection.  Anyway it has been horrible because I got constipated again.  I am having so much more problems with constipation and on top of bruised colon muscles, it hurts just to carry the concrete around inside me.  I was planning on waiting until my next loose motion before I bottled it up for the lab test for Crohn's but it did not happen so yesterday when I got more than a pebble I collected it and went to the pathology collection room at the hospital for the blood tests at the same time as returning the sample.  It was the most 'normal'  sample I could have produced.  Not what I wanted to happen for the lab but it was great to feel so much improvement.

As coincidence would have it, now that I am feeling better, the universe flings a few things to deal with my way.  S phoned the night before and said he was having a panic attack but then when I repeated it back to him, he said "nah I'm not".  Then again yesterday evening after I got back from the hospital outing he phoned to ask if he could come and stay the weekend.  Then another phonecall later saying he wanted to stay for a week as of next Wednesday to save him money which means coinciding his next move to a new share house further up North with pay week.  Then he rang back and said he was having a panic attack, his car battery had just gone flat, he wanted to go to see a doctor and that I should come up and get him now.  But I do not think my actions are always for the best when I have to advise S.  I did not go and get him at 5pm in the rain to drag him off to the doctor like he was suggesting.  All of a sudden he wants to be Mummy-ganged again after all these years and talked into getting help - but only for a split second - he has probably changed his mind. 

He admits to not knowing what to do.  He seems to be at a crisis point.  After two years of knowing exactly what he wanted to do and how he was going to pursue it, he is floundering.  Roger said so too but also said that he sounded all together mentally.  Roger has started giving S money again when he phones with a problem - the car.  S broke the drought because he needed help.  Roger also asks to borrow money from Bev or B and St and back the other way with B and Stac so the money-juggling continues.  Funny how Roger is being obliging now that Br is working elsewhere.  Maybe soon he will want S out there working - if you can call it that.  While S is lost, I guess he is easy prey.

Anyway, I am going to top off a rather low, low week with a weekend of S (for stress) beginning today - Friday and I have to somehow encourage and advise at the same time as trying to teach him how "not to worry".  He will eat all my food this weekend, then it will be from Wed until he moves again that he'll be here.  Why he has to come this weekend as well as from Wednesday I don't really know.  Normally he would avoid spending too much time with me so I figure he is not comfortable in his share house but he denied it.  I ended the phonecall by telling him to get his car going - because he cannot come down here without a car.  So he left to phone the RACQ.  He was sitting in the car out the front of his house - initially trying to tell me that he was just trying to chill out in the car and relax so he just gave me a call - then soon realized that the phonecall with me was not relaxing him so he would hang up, then ring again.  That was the scene yesterday.  Today is yet to come.

Thai forest monk, Ajahn Chah

If you let go a little, you will have a little peace.
If you let go a lot, you will have a lot of peace.
If you let go completely, you will know complete peace and freedom.
Your struggles with the world will have come to an end.

Poo Specialists

I went to the ibd clinic for my appointment yesterday which was mainly the specialist-trained nurse, who was well-informed I might add, rewriting my gut history in brief.  That meant answering a lot of questions.  My brain was not taking things in very well and I did not make the best opportunity of the appointment however I came across well.  She wanted me to try a different oral thrush treatment so has written that to the G.P. and she described oral Crohn's and how it presents and I only fit in with about half of what she described.  Ulcers are meant to be obvious and I didn't have any that actually broke through.  She asked about whether I had ever had an MRI or one of the other scans of the gut (can't remember whether she said SPECT PET or CAT).  I haven't ever.  But I made it clear that I was not there for another colonoscopy.  My body still would not cope with an anaesthetic.  I just wanted to know what was going on with my mouth.  It has started burning again and the Daktarin Oral Gel I bought at the chemist yesterday just makes it burn all the more and I am no better today.  I have never seen white thrush marks.  It is all just red and she said it looked like my tongue had a surface layer gone.  She said I should see a dentist to see if it gingivitis but she has also ordered blood tests to screen for B12 and folic acid deficiency and bloods again seeing they seem to be fluctuating lately and a poo sample.  I cannot remember which is screening for something that is a sign of active Crohn's.   First I ever knew they could even do it via blood or poo.  Finally something non-invasive.

The blood lab was closed and I have to take the poo sample back for this special test that gets frozen and sent to Melbourne so I will get it done next week.  It was Friday and everything was closed by then.

The blood tests will be FBC, ELFTs, CRP, ASCA, P-ANCA, ferritin, folate and B12

If the ferritin level is low, there is a risk for lack of iron, which could lead to anemia. Low ferritin levels (<50 ng/mL) have, however, been associated with the symptoms of restless legs syndrome, even in the absence of anemia and sickness.^[18]

pANCA (Perinuclear anti-neutrophil cytoplasmic antibody) is found in about 50% of those with UC, but only about 5% to 20% of those with CD.
ASCA (Saccharomyces cerevisiae antibodies), IgG and IgA. ASCA IgG and/or IgA are found in about 40% to 50% of CD patients. ASCA IgG is found in about 20% of those with UC. ASCA IgA is found in less than 1% of those with UC.
The stool sample is looking for Faecal Calprotectin.

I am glad we have a dedicated IBD clinic in Caloundra now - acting as an arm for Nambour no doubt but I can see an improvement over the years.

We will have a telephone consultation on June 10th so that I can find out the results and report on my mouth after trying the anti-fungal starting with "f" or ph I think.  I saw it written last night and I still can't remember.  Zena is probably more informed about anti-fungal treatments.  Is there one only available on script and not just over the counter Zena?  Stupid doctor for not suggesting another type of anti-fungal instead of giving me a repeat of the same.  I will keep trying the Daktarin type today but it burns so much!!!!!

On May 25th I have to go to Nambour which I imagine will be exhausting since I'll be walking a fair way.  Cannot afford the hospital car park and the place has expanded quite a bit so I will have to find a brand new building and a brand new ticket system so I will have to allow extra time on top of travel time.  It is times like this I wish scooters were easy to hire.  They have them in the Supermarkets for customers in the USA.  I may well be walking briskly that day anyway - who knows.  But I have continued with a lot of gut problems and nausea as well.  My diet has been restricted for two weeks and I have had chronic rather than acute pain in the gut since that horrible attack.  And with the gut has come the joint pain, an increase in fatigue and my mood has got lower.  I really hate the nausea.  My neck headaches are on the verge of flaring and normal pain killers just aren't doing it for me any more.  Leg aches seem to worsen because when the gut pains, the lower back seems to go off in sympathy and that extends down my legs.  I am still remembering fondly the good day I had when I went for that long walk and came home with a fish.  The diarrhea started again not long after I returned - maybe it was toxic fish!

New home for old microwave - among the Tropical Birch leaves.

I have not done anything fun since but I nearly had the house on fire yesterday when the electrics went inside the old microwave I got in 1985.  I had to turn the power off to stop all the sparking and banging inside but then the black toxic smoke started and I was really scared it would blow up or ignite.  It was Flora to the rescue who took the chances.  I wanted to call the fire brigade.  I was appalled that she might be exploded to smithereens in front of my eyes and tried to stop her, but in the end after the smoke looked like it was subsiding we both carried the melted thing out the front where it still sits stinking.

I've been caught out twice in 24 hours heading towards where the microwave used to be armed with a glass of milk or bowl to heat up.  Now I need a man with a trailer who is already heading to the dump with a $25 load.  I could be waiting a while.

Glimpse of Connor during Gut Phase

He was in one of those self-absorbed moods when he brought Connor over so I could finally give him his Hot Wheel's Easter Egg.  It breaks my heart sometimes to see how much of a killjoy he is.  He would not let Connor keep the Gecko that he captured in my house and which dropped it's tail much to Connor's fascination.  He had gotten as far as the car with it in his hands but when he saw that it was going to be grabbed by his Dad, he let it go in the slot where S was just about to put his mobile phone.  Swipe, miss, caught, and next thing I have a Gecko with a graze in it's head that peeled off it's skin over half it's head and still ofcourse missing a tale.  "Stomp on it" orders S in front of Connor who looked at me with horror.  I was not going to stomp on it in front of Connor but it may well have been what I did after they drove off.  But the gecko did not live that long.  His Dad jumped out of the car and stomped on it when i simply put it on the ground. Connor has to go off for a whole weekend with that self-absorbed control freak because S is really autistic this weekend.  You could see it in his eyes.

He ran from me when, as they were leaving, I was chasing him with the tree lopper to get through one branch I had hacked through lack of strength a few days ago.  It was 30 seconds of favor.  I insisted. Under sufferance he did it.  He is not much of a giver and he would not give in an inch to Connor who wanted to go to the closest park to here where he had built a stick house and wanted to see if it was still there.  But know, whether Connor liked it or not, they were going to Mooloolaba Beach to have curried-egg sandwiches which Dad knows his son won't eat.  Go figure.  S was not like this the night Mum spoke to him on the phone and when he was that person he would not remember being the kind of mean killjoy that he is today.  He had that suspicious look in his eye whereas the other day I got hugged for a greeting.  I hope he finds his comfort zone or safe place later today for Connor's sake. 

  He has also now decided he needs Vitamin D (some of mine ofcourse).  He announced he quit on the cellular stuff and the fish oil.  Now he seems to have picked Vit D but the few I put in a bottle for him, he forgot to take, just like Wednesday when he forgot to take the bread he so badly wanted.

If you want to know more about the Gecko, read on.  I am quite sure that this was the baby Gecko that was always in the way in my house.  Over the last week, I keep bumping into it in the most unexpected places for a Gecko.  The usually are out of sight during the day and may scamper across the walls at night, but this one was everywhere anytime.  On the stove when it was on, under the pile I picked up, under my feet, running around the computer desk and meandering across the floor.  I said to it yesterday - "it's a wonder you're not dead by now".  I tried to catch it so I could stick it outside because I didn't want to be the one that ended up squashing it.  Ever seen a gecko plastered to the wall in the crack where the door opens and shuts?  It is not a pretty sight and I keep an eye out for these things.  I know others would not bother.  R.I.P gecko.

Connor and I got in 5 minutes of play with the cheap version of the electronic spirograph that I always wanted when I was a kid.  I wanted the one that you did by hand, not this sort which rotates by battery power.  It was an Avon gadget and I have played with it before with Connor but I actually bothered to take out a screw-driver and remove the dead battery, replacing it with a new one this morning in anticipation of Connor's visit.  I think that the only reason his Dad even brought him here was that I had the Hot Wheels Easter Egg to give him.  It's hard for our side of the family to keep up with the gifts that have poured in from the other side of the family.  I have not heard of an Easter Egg coming from S and I know I have received nothing from my boys for my birthday and I am sure B could have afforded a $10 Amazon voucher for my Kindle which is what I asked for.  Maybe I will send him a link for Mother's Day tomorrow.

From Gecko's to Guts;
my gut is still playing up but not acutely now.  I think the chronic version is here for a while.  The motions are back to normal unless I let the spasms mount by eating too much or moving too much particularly bending.  Every morning I have had to take some codeine to slow it and it works but I have to be careful not to slow it down too much.  Unfortunately the joints have joined the party so now I am swallowing glucosamine and chondroitin.  My afternoons have been OK but the aching is getting to me.  I have spent so much on supplements this year.

Family Catch Up

It just goes to show you that things can change.  Both my boys phone me every week or three and not just because they want something.  That is only every second phone call haha. 

B has only worked 3 days each of the two weeks he has worked for Widgee Engineering because of all the holidays.  Tomorrow is Labour Day and on Tuesday he is going to the Lung Specialist in Nambour so he has the day off (and his boss did not mind) so it will be another 3 day week for him this week.  He actually rang to share his knowledge about an Android App.  He still enjoys talking gadgets and computers with me.  He did not volunteer any information about he and Stacey - I think they let things slide a lot this time for the sake of peace.

S phoned today and rarely does more than touch base.  It is hard to extract anything out of him but he is still in the same house because "I have not got anywhere else to go" and he has not seen Connor since he came back from Bali and he didn't ransack the office at work to compare sales figures.  There you have it.

Hope against Hope that this isn't Crohn's

I have had a not so good week with my gut.  In fact ever since the attack I had way back at the end of last year after getting constipated on those trial medications for fibromyalgia, the gut problems have flared up and down but only for a couple of days at a time.  It has been a week of it this time and I am back to being scared of what I eat.  I automatically give my bowel a rest from heavy food when it plays up but that usually fixes things or it has done for such a long time now.  I guess that was what they call remission.  I could have gone camping had I not been ill with everything else because there were plenty of times I did not have to worry about getting to the toilet in time.

I was so lucky getting to my birthday lunch after a morning of toilet trips and that yuk nauseous feeling and I enjoyed the meal.  It did not seem to aggravate anything either but the next day, and the next and so on have been days where I have gotten the long forgotten combination of feeling both repelled by food and excruciatingly hungry at the same time.  I have had some intense waves of normal nausea but this other nausea is from further down than the stomach.

I have not had any delayed attacks where the pain is excruciating since that one a few weeks back but now this week I have a constant low gut pain, the one I remember is aggravated by bending.  It is a pity the weather is getting so cool at night and in the mornings because I want to be wearing loose clothes and avoiding wearing long pants or PJs.  I have only got up to about 8 trips to the toilet on one day but I have avoided more by not eating anything in the morning.  In fact, it has been about 1 - 2 pm before I feel safe enough to eat without cramping.  Today I felt improved in the morning so that I ate much earlier and I did not feel the need to take anything to slow the bowel (codeine or lomotil or Tramadol does it for me) but about 2 hours after that meal it was a different story.  So far then I have been able to obtain relief by taking something like that.

Yesterday the pain above my pubic area was killing my lower back too and it went down into my thighs - all on top of my normal aching.  I am so tempted to try the LDN since trials prove that it helps with active Crohn's.  But I am worried about being labelled non-compliant or worse if I confess to using it when it has not actually been prescribed.  I will suggest it to the Gastroenterologist or ibd nurse who I visit on May 13th. but like most, I am sure they have never heard of it and it will be the last thing on their minds.  I could try it for a week before then and then stop it before I go.

The main reason in my mind that I was going to the Gastro was for this burning mouth.  The way it is now, I can put up with it easily because it is so much better but I have had a few lumps and bumps rise up only to go back down again within 24 hours and a few feelings of the beginning of an ulcer on the floor of my mouth and side of my tongue.  Anyway, now I have these gut symptoms to complain about too but honestly I do not want another colonoscopy.  It is hard to believe that constant health problems that I have had since last November have triggerd off the Crohn's again.  I have been really tired and sleeping a lot the last few days.  And I was not well enough to go to the shops that day I was talking to Deb.  I had to stay at home again and have done all weekend except for the quick trip to Pelican Waters shops.  I'm now really hungry.  I'll try some creamed rice.  Have a nice day.