A Medical Diary: Coping with Lupus and Ehlers-Danlos Syndrome

Laser treatment to right eye Dr Adrian Hunt, ophthalmologist, performed laser repair on the right eye cornea to remove a film which had formed as a result of cataract removal in Oct 2012.  The film was occluding my sight.  There were no ill effects of the procedure, merely black floaters and an eye ache in the afternoon.  I had more trouble from the dilation drops when I went out into the sunny day than from anything else.   No follow up needed unless something untoward occurs. My sight has already improved!

Visited pain pecialist Dr Tim Ho in Newtown offices to remove staples and follow up on surgery 13 Nov to implant permanent spinal  nerve stimulator. Dr Ho removed staples and stitches from two incisions.  Healthy and healing well. Now able to shower etc.  No restrictions apart from no bending for 4-6 weeks.  Cleared for everything else. (Including sex) in moderation. We discussed pain levels. Device has removed unbearable pain however programme needs tweaking as still severe pain a lot of the time.  Meeting Medtronics rep this week. Dr Ho will see me again in mid January in Hurstville offices.  

Consultation Patrick Choueifati 20 Nov 17 Wrote a note to Patrick re going into a lupus flare.  Symptoms are: Ulcers in mouth tongue and throat Red rash on face and body like sunburn Discoid rash on hands and forearms (could be else where as well) Intermittent fever Very swollen parotid and salivary glands Debilitating fatigue Shortness of breath and shallow breathing (O2 machine telling me it cannot detect my breath) and sharp pains on occasion when I take deep breath I have  increased prednisone to 35 mg Increased O2 to 4 LPM (from 3LPM) Naturally Patrick is not happy with increase in prednisone.  Nor am I.  It leads to all sorts of uncomfortable complications.  But is is better than the symptoms, whereby I don’t want onto get out of bed at all.

Visit to Dr Diamond 22 November 2017 I consulted Dr Diamond endocrinologist regarding recent development of reactive hypoglycaemia, and for advice on some minor issues.  Terry has been my endocrinologist for 25 years, and looks after my fragile bones. He changed the metformin from 500mg mornings to 250 mg morning and lunch.  If that doesn’t work he suggests not taking metformin at all, just relying on diet.   He also changed the frequency of the Vit D injection from yearly to 9 monthly. We discussed the fragile bones issue and he recommended I use a vibrating platform for 20 minutes every day to assist the bones and the oedema in my legs and feet.  The South East Aboriginal Health Care people will be funding this for me.  We also discussed  My numb finger tips.  I had not expected the demyelination of the sensory nerves to progress to complete numbness so quickly and he said it is autonomic neuropathy, which is affecting me th...

I am having problems with recharging my nerve stimulator device.  When I have it charging, it overheats after 3-4 hours.  It beeps and a warning sign comes up.  The charging efficiency is usually 4 squares.  This has happened for 4 nights so far and the past two nights I have not charged past 3/4 as I have stopped when the arial gets too hot.  Last night, Saturday, I fell asleep while I was charging and I was woken by the beep telling me I had overheated.  I had noticed I was very tender over the device when I started, and when it overheated it was painful - I thought I had burned my skin.  Despite that, as it was nearly midnight, I just took it off, noting I had 3/4 charge, and went to bed.   This morning, Sunday, I asked the nurse to look at my wound.  I have more than 10 staples in the wound.  It is red but not burned.  It is not so tender today.  I charged a 1/4 charge after lunch, for an hour, and I intend to charge ...

I am in a lupus flare.  I suspected prior to the latest surgery that I was going into a flare - my glands had started to swell around my face.  After the surgery last week, I was very sick and could barely pull myself together.  I forced myself for several days, but by Wednesday I knew I needed to support with Prednisone and take some time off to rest.  I had a function to attend on the Saturday, but I did not go out on my regular Friday or Sunday (today).  Given how shaky I am a good thing, too.   I have swollen parotid and salivary glands, an intermittent fever, ulcers on my tongue, intermittent red rash on my body and especially on my face.  Last Wednesday it was as if I were sunburnt.  I am very tired but I cannot sleep.  I wouldn’t be surprised to find other things wrong, but that’s enough to go on for now, thank you.   I am supporting with extra 10mg prednisone.  I had supported the surgery with a 50 - 40 -30...

 I managed finally to see a dentist at the dental clinic! I had broken several teeth over the past 6 months and the latest was a doozy, leaving a big hole in the back of my mouth.   It was a large molar and the edges were very sharp, like a razor and cutting the side of my mouth with each movement.  As well a molar on the other side had started to cut my mouth as well.  So I had to see a dentist even though I would have liked to delay it.  I knew what they were going to say - remove them.   The dental clinic call centre person had commiserated with me over my complaints and then offered to put me on a fast cancellation list - except she didn’t put me on the right one.  I waited several weeks, not feeling well, and through the trial of the nerve stimulator, and then I had coffee with a friend who looks after my funding through the Close the Gap scheme.  I told her about my wait and she spoke to someone - the upshot was that I saw someone with...

I have been busy this last month.  I had the trial for the nerve stimulator implant, which was successful..  Thus started a waiting period.  I  had to wait a month for the wounds from the insertion of the wires for the trial to heal before the permanent wires could be implanted.  A long three weeks, going back to unbearable pain.   The lack of really bad pain for a week highlighted the pain from the rheumatoid arthritis in my hips, which had started to be felt prior even to the trial.  That the pain could be felt over the bad pain of the spine was enough to say it was very bad.  After I had the trial wires removed, I embarked on a round of injections, which I do about every 3 to 4 months on average.  I had both hips and both shoulders injected under ultrasound guidance with a local anaesthetic and a long acting cortisone.  It works for me, and cuts in about a week later, somethings two, and reduces the pain to about half.  Any...