Inequalities in medication access: Ondansetron. AKA If you want to not vomit be prepared to pay with your left kidney and first born.

(source)

It's the wave first. The rolling wave of warmth. The clench in my abdomen. Foul saliva that fills the mouth. It passes for a second and I think I'm okay. I take another bite. And it hits again. Harder than last time. And gone. Play the rookie and believe that it's over. Momentary. Fleeting.  Hope. Delusion. That lovely little fantasy land where nausea doesn't exist. Nor vomit rising in my throat. The sweat that doesn't come thanks to anhidrosis but my body still tells me is there. Phantom sweat? The limb equivalent in a body that just as stubborn as it's resident, likes to pretend it's still like all the other kids. Place a little minty wafer on the tongue. Feel it dissolve. Let the hope be absorbed into the oral mucosa....

....Sitting in the loo down the alley way next to the cafe. Focus on the hole in the scuffed plasterboard and the wad of old dusty newspaper used to fill it. Try to read the words in the creases. Wave on wave hits and I am forced to put my head between my legs. Raise my head and it hits again. Open up my bag grab another wafer in it's little foil pack. This time. This one....

....Sitting in the car in the carpark waiting for my youngest to get out of the university open day. Spitting out a frantic “I'm going to vomit!” as my eldest looks on helpless. I've done too much. I know it. I knew it in the cafe and the specialist's room before. On the drive down and in the shower before we even left home. But what can you do? Life doesn't stop because you're ill, because your body forgets how to hold food. Another wafer. A last gasp....

....Four's the limit for the day and here I am on number three already. A three hour car trip awaits while I weigh up taking another tiny wafer or simply stapling a puke bag to my face....

Nausea is debilitating.

It affects eating.

Sitting up.

Walking.

Talking.

Simply getting through the day.

I have tried home remedies. A plethora of options from the chemist. And many prescription medications.

It is a daily symptom. A combination of a malfunctioning digestive system and periodic blood pressure issues. Dehydration adds it's own joy to the mix and suddenly even the thought of food, or water, has me running for the loo or grabbing a puke bag.

Eating is now a chore. I feel sick before I eat, while I eat and after I eat. Vomit and I meet up on a regular basis.

I am losing weight. Far more than I should. I am unable to absorb my food properly so that the small amount I force in still doesn't give me all the nutrition or calories I require. Even when I can get it to stay down, I still fight to maintain a weight that wont budge from the underweight range.

I have dealt with this particular issue for 9 years now.

After much trial and error I have finally found a drug that can help. It takes the edge off and allows me to eat a little more and have a better chance of keeping it in.

Ondansetron.

I am not alone in loving this little wafer. For many in the Dysautonomia and Gastroparesis communities it is the only drug that even comes close to taking the edge off the nausea.

The only problem? Cost.

Ondansetron is subsidised on the Pharmaceutical Benefits Scheme (PBS) for the following:

Management of nausea and vomiting associated with radiotherapy being used to treat malignancy.

Management of nausea and vomiting associated with cytotoxic chemotherapy being used in the treatment of malignancy which occurs within 48 hours of chemotherapy administration (May be extended for up to 7 days.)

For patients with other conditions also undergoing chemotherapy there is no subsidy.

For those with unremitting nausea due to others conditions such as Gastroparesis or Dysautonomia there is no subsidy. Not even women experiencing Hyperemesis Gravidarum during pregnancy can access the subsidy.

This is what a 4mg $3 wafer of Ondansetron looks like.

(Green jelly bean for size comparison. Green jelly bean promptly eaten after photo taken.)

On a bad day up to 4 can be taken or $12 a day, or $84 a bad week.

My dietician suggested I take it before each of 6 small meals a day or $18 a day, or $126 a bad week. (Luckily, I can't stomach 6 small meals a day)

It can only be bought in 10 packs. Or 2 ½ days worth if you're in a bad patch. Unless you have a doctor who will give you 5 repeats on the script. Even then you can't stock up. One repeat at a time.

So patients put up with nausea and vomiting. Lose weight and end up malnourished. Relief and potential functioning is put aside thanks to financial constraints.

Loopholes and less legal means are employed by some desperate patients. I am ecstatic when I present at ED and as part of my overall stabilisation, a shot of Ondansetron is injected into my cannula. One less dose I have to pay for.

By comparison, in New Zealand fellow patients pay roughly $5 for 50 of the same drug at 4mg and roughly $6 for 50 0f the 8mg version, and some even less. It is also routinely prescribed in the US under the name Zofran, yet here we continue to struggle with access.

For most of us this is only one out of many prescription medications we take. The financial burden of management always at the forefront of our minds. (Between over the counter, supplements, and prescription medications I take 14 different medications. 11 every day. The other 3 are break through medications. Plus a medical grade food supplement drink when I cannot stomach solids at all.) Costs and symptom/illness management must be weighed up. Frequently, even for patients who are vomiting multiple times a day, the financial burden is too great. Leading to poor illness management and more frequent ED and hospital admissions. For a government who espouses a need to cut costs, a costly ED or hospital stay and increased disability and care needs, hardly equates to the best financial option when weighed across subsidising a medication like Ondansetron for patients who have unsuccessfully trialed multiple other antiemetics and antinauseants.

I, like many others, take Ondansetron sparingly. Quality of life is reduced. Ability to function is reduced. But the cost, which as it is not on the PBS other than the situations mentioned above, cannot count towards the PBS Safety Net. A double hit for patients already struggling. A subsidised script is also not covered by Health Care Card, for those on pensions. A small change to the access criteria would allow Australian residents to access a very effective medication option that our fellow patients access with comparative ease overseas.

With no cure in sight and treatment only in the form of symptom management and off label prescribing, this is a burden both financially and functionally, that patients should not have to bear. Ondansetron is not a drug for all patients and like all medications should only be prescribed based on individual need. But it is hard to understand why the exact same disabling symptom, nausea and vomiting that doesn't respond to other medical options, should only be subsidised if you meet two very specific criteria. I don't begrudge those who qualify a single mg, but I do want a word with the bureaucrats who make the decisions. I am tired, exhausted and malnourished. And my tolerance for health care bureaucracy and the taste of bile is waning at an accelerated rate. 

….So I lay down in the car for the trip home. I kept swallowing down the vomit and riding out the waves of heat and phantom sweat. Breathing through the worst of it. Willing my body to quiescence. A fourth wafer the bridge too far financially. Ride it out. Hold the puke bag. Prepare the family that we may have to stop suddenly. “Now” means NOW. Throw up on the side of the road. In the rancid loo at the petrol station where the doors don't lock and the floor is always wet, or the one where the lights don't work and plastic seats are met with a combination of hope and desperation. So familiar. Too familiar.

Michelle

*I have recently discovered that if your doctor writes a prescription for 30 wafers at a time it saves you a considerable amount ie it comes down to about $2 a wafer rather than $3. Equalling about a $30 saving overall, compared to the usual $30 for 10.

**Then if you have private insurance most will cover the gap in costs from the standard PBS price (around $37) which brings the price down to about $1. But like everything there is usually a limit to how much you can claim.

***Ondansetron is only one example of similar discrepancies in access to medications for the same symptom but different aetiology affecting Dysautonomia patients in Australia. For example, Octreotide is subsidised for 3 set criteria. Cost outside of those criteria is quoted as approximately $4,000 a month, making it effectively inaccessible. But the whole vomit/nausea mess is making access to Ondansetron very salient at present.

***8UPDATE: my local member has written to the Health Minister Susan Ley on my behalf. Will let you know when I hear more. Thank you to Darren Chester MP for taking the time to read my letter, this post and contacting the Health Minister. 

You might also want to check out:

The Price of Health
Pukefest 2011: The Most Craptastic Event of the Year.
Accessing IV Saline: A lesson in futility.
Six Months in Chronic Illness

Goyte's song Thanks for Your Time, about the ridiculousness of automated bureaucracy and phone cues just seems appropriate.

You have been placed in a queue

But your call is valuable

It's very valuable

We hope this doesn't inconvenience you

Because you're valuable

You're so very valuable!

Florinef, I think I love you.

(Note: As always I am not offering medical advice of any sort, and not recommending any treatments.  A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on macarons and salty chips, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)

I've been meaning to write this post for ages. Like many plans, appointments, ability to spell my name, it all went into the sieve that is my brain, and fell straight out again. Memory, I had one of those once. I think. Maybe. What was I doing? 

I keep repeating the same tips on various forums. You'd think given that each time I write the same info I think "I should write a blog post about this", it would spark me into action. But no. Damn those bright shiny objects! 

So here it is, finally. My tips for starting/considering Florinef. These are based on my personal experience over the last 6 years, and as stated above always check with your doctor. I have been taking Florinef since 2007. It's my longest standing medication, and the one that was the game-changer in my treatment. 

Florinef (aka fludrocortisone acetate). Ah, you sexy little white tablet, you. You are my favourite pharmaceutical of them all. You let me almost have a life, rather than being stuck in bed or frequenting the carpeting or linoleum of various clothing stores. For that I'll always love you. 

Now, I'm not advocating that all Dysautonomia patients run out and try Florinef. Nor am I being paid in cash, or macarons, by it's manufacturer, Bristol-Meyers Squibb Company.  Any medication should only be taking in consultation with your doctor. The reality with Dysautonomia is that not all medications will work for all patients. It depends on your underlying cause. It depends on your tolerance levels and side-effects. It depends on your other medications. It depends on your other disorders. Some days, I swear it depends on whether Saturn is in retrograde, or if the wind is blowing from the North-East. Often the only way to know if a medication may or may not work is to take the plunge and see what happens. Even if you see an improvement, trying to find the right dose can also be problematic.

But back to the medication in question. 

The most common concern seems to be that Florinef is a steroid, and we are all rightly concerned about the long-term side-effects of continuous steroid use. Florinef is a steroid, but it is not like it's traditional cousins. No shrinking testicles for the guys, and no five o'clock shadow for those of us of the fairer sex. It will not lead to a generation of Dysautonomia patients sporting the physique of a 1980's Eastern block female Olympic athlete. It is what is known as a mineral corticosteroid. Corticosteroids are a combination of corticosteroid hormones, cortisol and aldesterone that are produced by the adrenal glands. Amongst all their varied roles in the body, they help to regulate the water/salt balance, something of importance for many Dysautonomia patients.

At it's most basic Florinef works by helping the body hold onto salt, which in turn holds more water in the body. These two processes combines to increase blood pressure and in turn reduce the reflexive reaction of our bodies to deal with the low blood pressure, tachycardia. Clear as mud, right? If you are hypovolemic, which a large percentage of patients are, or your aldesterone levels are low, it will help to increase your blood volume. 

So what are my main tips for starting and taking this medication?

• Start low: start too high and you are more likely to encounter side-effects. Titrating (going up incrementally) your dose over a few weeks can make it far easier to tolerate. For example, if your doctor prescribes .1mg, start at 1/4 or 1/2, tablet for two weeks. At the end of the two weeks, and if tolerated, add an additional 1/4 or 1/2 tablet. Repeat until your prescribed dose is reached. I have seen many patients prescribed doses such as .2mg who start on the full dose and discontinue within the first few days as the side-effects are to severe. The simple trick of titrating your dose can save a lot of pain and mean that you can take a potentially helpful medication.
• Side-effects length: the worst of the side-effects tend to last about two weeks. If you are titrating your dose be aware that you need to allow about two weeks for your body to accommodate each change. For most long-term users these side-effects become quite minimal over time.
• Side-effect types: These are many and varied. Some of the most common are: gastric distress (nausea, cramps, diarrhoea), increase in headaches, weight gain/increased appetite, fluid retention, thinning/dry skin, easy bruising, visual changes, and decrease in your immune system. I found that I had pain in my joints, particularly my hands, with the increase in fluid. A small percentage of patients will experience psychiatric symptoms when taking Florinef. If you or your family, notice a change in your mood or suicidal ideation contact your doctor and seek medical help immediately. Hypokalemia (low potassium) is a particularly serious side-effect and I'll discuss it in more detail further down.
• Break dose in two: I haven't had this issue, but I know many patients report a slump in the afternoon as the effects of Florinef wear off and blood pressure starts to crash again. It is possible to break the dose in two to maintain a more even blood concentration throughout the day. Warning: Florinef can cause or worsen insomnia. If taken later in the day it may impact on your sleeping.
• Storage: Florinef should be stored in the fridge. Update: have just found out there are some brands (Global Pharmaceuticals, Division of Impax Laboratories, Inc.) who make a form of Florinef that can be stored at room temperature. Double check with your pharmacy if that is an option. Much easier if you could get a room temp version and keep all your medications in one place. Thanks Allisone :)
• Eat before taking: one of the most common side-effects, even after long-term use is gastric distress, eg cramps, nausea or diarrhoea. If you eat something small, even a slice of toast it lines the stomach and minimises the gastric problems. 
• Hypokalemia/Low Potassium: this is an important issue for all patients taking Florinef. Florinef depletes the body's supply of potassium. Unchecked this can lead to hypokalemia, which if untreated can lead to heart attack. I am amazed at the number of patients prescribed Florinef who are not also given a prescription for a potassium supplement eg Slow K or Dura K (note most over the counter potassium supplements do not have the needed concentrations), or told to eat a high potassium diet. Many patients have ended up in the ER thanks to hypokalemia, and although it can be treated with IV potassium, this is an unpleasant experience (it can feel like you veins are burning). Maintaining potassium levels (amongst others) can be difficult for many Dysautonomia patients irrespective of Florinef, so it is important to keep an eye on your levels. A blood test before beginning and one week post-starting can be useful to see how your body reacts. After that, 3 monthly bloods are generally adequate to monitor your levels. (Some also recommend that sodium levels are also checked, but both tests are usually included in a basic blood panel.) Drops in potassium can occur rapidly as I found out. Having run out of my Slow K and thinking 1 day wouldn't matter I started to have quite severe heart palpitations and weakness. An emergency Slow K run to my local chemist and these symptoms disappeared shortly after taking 2 tablets. 
• Water and salt: Florinef's main mechanism is to help the body hold onto salt which in turn holds more water in the body. It is important to maintain a high salt and water/fluid intake for the medication to work. Without it Florinef will not work properly.
• Blood pressure: monitor your blood pressure, especially when starting. Florinef is used to raise blood pressure in those with hypovolemia. It can be a fine line between a normal blood pressure and high blood pressure. It can also take time to find the balance between dosage and healthy blood pressure. Due to changes in your underlying disorder or your body's tolerance to the medication you may need to either reduce or increase your dosage over time. If you are starting to get more headaches or you have a history of conditions such as benign intercranial hypertension, check you blood pressure to ensure you are not developing hypertension. 
• Osteoporosis/Osteopenia: Long-term users should get a DEXA scan to check their bone density as this is a risk factor for some. Especially if you are also less mobile, not outside as much or have a family history. It's no where near the same level of concern as traditional steroids, but like everything just keep it in the back of your mind.  
• Moisturise: Florinef can make your skin very dry, especially if you have been on it for a long time. Invest in a good quality moisturiser, eg one with a high percentage of shea butter and slather it on. I have noticed that as a result of drying out my skin is also more sensitive to a range of products.
• Do NOT stop taking it suddenly: this can cause a rebounding of symptoms. As was recommended for starting Florinef, titrate down especially if you are on a higher dose. For example: I recently developed supine hypertension and my cardiologist recommended a decease in my Florinef to hopefully ameliorate the change. My first attempt at a decrease by 1/2 tablet ended with rebound migraines and more frequent blood pressure drops. I reworked my titration rate and both have settled for the most part, 2 months later.

With all of these tips ALWAYS check with your doctor before implementing. 

As with all medications it is a question not only of if it works, but the risk/side-effect/benefit issue that must be balanced. This will be different for each of us. Side-effects I can tolerate may be unbearable for others and efficacy will differ amongst patients (eg Midodrine made me feel like I was going to either stroke out or have a heart attack, and yet for others it is their most useful medication.) As such, to start taking, or continue with, Florinef will be a very personal decision.

There are no doubt other tips that I will think of after I push, Publish. I will update if I do. But until then I hope these tips are helpful.

Cheers

Michelle :)

There is a lot of information about Florinef on the Internet. 

A simple guide can be found here.
A more comprehensive explanation of the pharmacotherpy behind Florinef can be found here.

To Pee or Not to Pee: Desmopressin

(Note: As always I am not offering medical advice of any sort, and not recommending any treatments.  A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on hotcross buns and Easter eggs, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)

Those who have been reading this blog for a few years will know the frustrating journey I've been on trying to find a pharmacological cocktail that would help tame Bob. Some may recall the joy of Mestinon (here, here, here, here, here and here) which left me communing with my porcelain lover for weeks on end. Or Midodrine (here and here) which left me thinking I was going to stroke out or have a heart attack from the excruciating pain. It's a story played out for Bobettes world wide.

Whilst there is a general group of medications used to treat symptoms it is still a case of trial and error. What can be a godsend for one person, can be evil incarnate for another. Add in that we tend to be a sensitive bunch when it comes to tolerating medications, with many only tolerating paediatric doses, and it's one big funfest.

Unless you are one of the blessed few who know the underlying cause of your case, and also hit the jackpot and find your cause is treatable, your only options are to try and manage symptoms as they crop up. I feel like shouting "Once more unto the breach, dear friends, once more*" some days, as a new body part fails and we try to plug the hole with a yet another new med and a good dose of hope and prayer. Overall, the only thing my personal cocktail has been able to treat with any sense of success, is my fainting. Other than that, I am better on meds than off, but only by a small margin.

Last visit with my cardio involved a lengthy discussion about quality of life issues. We are waaaaaay beyond the idea of cure these days. Apart from trying to narrow down and find a cool unpronounceable name for what is causing my overall decline, the rest of my management plan is trying to minimise the excess disability so I can maximise participation in life. And you know what puts a big fat dampner on participating in life? Needing to pee like a race horse, every 3 nanoseconds.

(I know, I know, yet another TMI post).

I'm not alone in my frequent peeing issues. It is the bane of many Bobette's lives. We live at extremes, either can't pee, or can't stop peeing. It's a joyous existence. It's bad enough during the day, but during the night, ugh, it's hideous. I already have issues with sleep. Insomnia is another one of the fun symptoms of Bob, and a common lament of patients across the globe. Weeks upon weeks of insomnia, only broken by a few days of coma sleep as your body finally succumbs to it's utter exhaustion. And insomnia is bad enough alone, but if by chance you get the blessed hour straight of shut eye, you really don't want to be woken up by your bodies desperate and unrelenting need to pee.

I've tried all the usual tricks, eg putting the head of the bed up 6 inches, or on 2 bricks. Apart from sliding down the bed in the middle of the night, the only real difference was that it dropped my peeing down from double digits each night to 4-5 times a night. Which is still quite good in the big scheme of things. And by now I've learned to take those little things and stick them in the win column. But really it's still not conducive to living a regular life. Add in that during the day I go through the same process. I drink a glass of water and then within half an hour I am peeing it all out, and then some. Makes remaining hydrated and keeping up your blood volume rather problematic. And each time I have brought this up to my many and varied specialists the answer is always the same, "It's part of the dysautonomia, suck it up".

I am lucky in some respects in that I have a cardio who is willing to listen to me and to consider other options (hence how I found out about Jeff, my mutant left jugular, and was subsequently treated for CCSVI). And this was another time that she came to the table open to discussions. Desmopressin, DDAVP (a biosynthetic form of the pituitary hormone, vasopressin, which increases water reabsorption by reducing the amount of urine produced).  This was a drug I had heard used overseas in Bob patients with peeing issues, but not used here in Oz. In fact, despite my cardio being the leading specialist here, she'd never prescribed it for a patient. After presenting it to her as a potential option, she was open to the idea. This is where I know I am lucky. Too often you hear stories where doctors are reluctant, or in some cases downright hostile, to patients bringing ideas to the table. Damn, us annoying patients daring to advocate for our own health! But after nearly 6yrs together I'm thinking we've established some rapport and respect, and that makes all the difference.

After researching it's use in Bob, I finally got the okay. A quick trip to my GP, and a gallon of bloods later I had my prescription. It's not a cake walk prescription though. There are issues with things like sodium levels and fluid intake. It also interacts with a lot of other meds. Plus I will be having monthly bloods from now on. (I am also having weekly bloods to monitor things like my sodium levels initially, just to make sure I don't have a nasty reaction).

It's a wee little wafer you put under your tongue to dissolve. Which of course always makes me think of this Monty Python skit from The Meaning of Life, " Oh sir... it's only wafer thin". (You can also get a nasal spray and a tablet form).

I will admit to some trepidation in taking that first dose. Last thing I need is to complicate things by stopping peeing altogether or ending up with fluid around my heart. And like every other med, you just don't know how you'll react. Plus there are pesky issues like having to stop drinking 2hrs before taking it and drinking no more than a few sips of water for 8hrs post dose. Which of course all sounds counter-intuitive for Bob, especially when hypovolemia is an issue.

But after taking a big can of harden up I took my first dose before bed, and......

......I'm in love.

I know, crazy lady in the house. But damn it. If Desmopressin was a guy I would totally snog him silly right now.

A whole night and no peeing. None. Not a drop. I'm pretty sure I heard a choir of angels singing when it dawned on me that I hadn't gone to the loo once during the night. And even more excitedly, there was a therapeutic lag. By lunchtime I'd only been twice!. TWICE!!!!! Do you have any idea what that is like? Okay for the regular non-Bob effected readers, you'll be all, "calm down strange lady with a pee fixation. You only went twice, whoopdidoo". But for Bobette's around the world there will be a collective "WHOA". For those of us in the pee like a race horse camp this is akin to solving the Riemann hypothesis. It's damn exciting.

Even stranger, my hr has been stable. None of this tachycardia business. I've been sitting around 55bpm, with maybe a 70 when I stand. After having increasing tachycardia over the last 6-12mths this is quite amazing. Since I've been ill I've also had a headache 24/7. From the moment I wake up to the moment I go to bed there has been head pain, it's unrelenting. But from the morning after that first dose it is dulled. DULLED.

On a practical level, I even managed to get up yesterday morning and make a batch of hotcross buns. I baked. In a hot kitchen. In the morning. This just doesn't happen. mornings have been my worst time of day from the start. Usually, my mornings involve a rigorous program of moaning, lying on the couch and trying not to vomit or pass out. Only punctuated by struggling to lift a pathetic arm to bring the coffee or my tablets to my mouth.

Oh how I love you, little foul tasting wafer of druggy goodness.

Now many aspects of Bob remain unchanged, eg my oscillating blood pressure. And my internal thermostat has been reset to permanent Sahara, with a side of surface of the sun, once more. But I'll take what I can get. And for once in this shit fight of a life, I have had a win.

The question then arises, how much was I peeing out? I mean I knew it was a lot, but I had no idea just how much or that it was making such a huge contribution to my hypovolemia. Given that I am already on a blood volume expander, I must have been filling at least an Olympic sized swimming pool each day with my watery offerings.

So far so good. No noticeable side effects. And if my bloods come back okay I'll continue taking it.

So put that one in the Win Column. Suck it Bob. Suck it!

Michelle :)

Why yes, Desmopressin I think I love you.

* Henry V, Act III, Shakespeare, 1598.

A Word From Our Sponsor XII

Well my short lived affair with Midodrine is over.  I should have know that he was going to be trouble with all the effort it took to arrange our first date.  High maintenance, and a bastard to boot.  It was all about him from day one. 

Our days together went pretty much like this:

"Take me now Michelle" (lifting my eyelids and sticking his face 2cm from mine).
"Well I really don't want to.  I'm tired and I want to sleep in".
"Take me now (pout). Take me now, take me now, take me NOW"
"Okay. Okay.  I'm getting up.  Geez Louise take a chill pill".
"Take me now". (stamping feet and pouting like a two-year-old).
"All right I've taken you.  Will you shut up and leave me alone, I'm tired".
"You can't lie down.  You have to stay up and spend time with me".
"Listen buddy I don't really want to do that".
"Well I'm going to scream in your ear, poke you in the eye and jump up and down on your chest if you lie back down.  In fact I'm going to do that anyway cause I find it fun".
"Okay okay.  Can I lie down in a little while"?
"Nope.  Have you seen that episode of Buffy with the creepy floating Gentlemen? Remember, I'll scream.  Oh, and in four hours you have to take me again.  And then again four hours after that.  It's all about me lady".
"I don't think this relationship is going last".
"I don't care.
"You're a bastard Midodrine.  Have you heard of Lorena Bobbitt?"

So after a delightful pain-filled trial I have kicked him to the kerb.  He and Mestinon can go hang out together.  No doubt they'll have their own reality show soon, The Bastard Bachelors, complete with smarmy host, and a group of desperate, fame-hungry, vapid, peroxided, 20-somethings vying for their attentions.  Good luck ladies. 

Since I gave him the "It is you. Not me" speech, I've been walking round the house singing Paul Simon's, 50 Ways to Leave Your Lover.



Now as happy as I am to be out of such a bad relationship, it has left me in the middle of no-man's land. My cardio can no longer suggest any new meds to try.  I knew it wasn't going to be a good appointment when I was lying on the bed in her office and she looked at my legs and went "Hmmmmm" and did her "Oh Shit" face.  Apparently if Midodrine was going to work my legs would no nolonger resembles those of the rotund, purple McDonald's character Grimace.  After much hmmmming and scratching her head, she actually leaned back in her chair and said "I really don't know where to go from here".

Woo Hoo just what you want to hear from your specialist.  She did give me some huge insights for my money though.

• I'm really ill (no shit Sherlock).

• My venous system in shot (ahhh yeah)

• There's no doubt I have dysatonomia (didn't we figure this out a couple of years ago).

• I don't fit into any of the standard sub-types (again, didn't we establish that a couple of years ago?).

• I have "Michelle's disease' (see above parentheses).

• I don't respond well to the available meds (Duh!).

• I'm not a nutter (parentheses people).

$120 well spent I say.  She did say if I (who knew I'm an autonomic/cardiac specialist?) can come up with any ideas she's happy to write a referral.   There are a couple of long shots that potentially may be of use, which I'll get into if they come about.  But I'm pretty sure from the look on her face that my chances of success are about as good as my chances of actually becoming Heidi Klum.  I know she cares, is frustrated, and is trying her best, but I'm pretty sure a "Dear John" letter is on it's way to my door.

After many hours of internet procrastination/research I did run across one med that might just be worth a try.  I wonder if my cardio will write a script?

What do you think?

Cheers
Michelle :)

Okay this is a late addition but I only just saw it on a friends FB page and I feel it may be the solution I've been looking for.

Bob and the White Rabbit

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don't do anything at all
Go ask Alice
When she's ten feet tall
(White Rabbit, Jefferson Airplane, 1967)

I've always loved this song. It's the quintessential 60's psychedelic anthem. Since Bob came into my life that first verse has taken on a whole new meaning. Pills and Bob go hand in hand. Unfortunately I have a sneaking suspicion that the members of Jefferson Airplane were having a much more entertaining time with their pills than I am with mine.

I take Pill A to increase my blood volume, Pill B to constrict my blood vessels, Pill C to manage my heart rate, Pill D to alter the neurochemical messages in my body, Pill E to compensate for the total lack of Vit D in my body, Pill E for the chronic gastro symptoms and Pill F to counteract the side effects of Pill A.........

Then there is Pill Q for the excrutiating headaches which result from low blood pressure, Pill R to stop the chronic hayfever which also lowers my BP, and Pill S a multi-vitamin which I take in a vain hope it might help something!

It's trial and error with the medications. You get to change pills because some just don't work, some have too many side effects, you need to keep increasing the dose to try and manage your escalating symptoms, or you need to add a new drug for the new and exciting symptom that has just developed.

I have become the human maraca, if only I could keep a beat.

Prior to Bob I would have been lucky to have a panadol once a month for a headache or the occasional Telfast for my hayfever. Now I'm on a first name basis with the pharmacist at my local chemist.

The side effects of many of the drugs can often seem worse than the symptoms they are supposed to treat. I've had a delightful collection of side effects some of which have passed, some of which are very very persistent, some of which are just plain weird. The list includes:

nausea (even water can make you want to puke)
vomiting (threw up for almost 6 wks when I started one of them. Better than Jenny Craig but oh so unpleasant!)
stomach cramps
the trotts (sprinting skills much improved, watch out Asafa Powell)
headaches
weird skin changes (bruise easily, dry skin, no tone, strange dots)
hair loss (it fills the shower drain every day)
dry mouth
painful hands (up that Florinef and I can't touch my hands for about a week)
insomnia, or conversely
drowsiness.

Fun, fun, fun.

My colourful pill collection is just part of the furniture now. I keep them in a cute red Arnotts biscuit tin on the bench (the Florinef in the fridge next to my chocolate stash, it's all about developing positive associations!!). My kids know what are my morning pills and my evening pills. They are so cognisant of my brain fog that they always ask "have you had your tablets Mum?". Three years ago we used to joke when the grandparents came to visit with their plastic shopping bag filled with their medications!

What can you do? You need the pills to function so you just have to suck it up. They're not a cure but they help you keep Bob in line, at least part of the time. It's all part of the joy of living with Bob. In the sage words of Jefferson Airplane:

"When logic and proportion
Have fallen sloppy dead
And the White Knight is talking backwards
And the Red Queen's "off with her head!"
Remember what the dormouse said;
"Keep YOUR HEAD"

Luv it!

Cheers
Michelle :)

Chiko Roll: the new Super Food.

Forget blueberries and salmon. Apparently Chiko Rolls are the new super food.


For those of you who are unfamiliar with the culinary pinnacle that is the Chiko Roll (I don't think they are sold outside of Australia), it is an Australian classic like a lamington or vegimite. They are sold primarily in fish and chip shops and every road side petrol station in Australia. They are a bit like a giant spring roll, deep fried and filled with a cabbage and miscellaneous "goop". The advertising posters in the shop are a fantastic tribute to Australian Ockerism. Its always a scantily or leather clad, big-breasted woman on a motor bike with a Chiko Roll in her hand. Its all very phalic. But I digress. (Wow who ever thought I would spend so much time describing a Chiko Roll, that's 10 minutes of my life I can never get back. I think the word "Sad" comes to mind).



When I went for my first tilt-table test I was given a list of foods by the cardiologist running the test. There was a speal about the benefits of salt in the diet, "Salt good blah blah blah. Eat more salt blah blah blah". Then there was a list of salty foods with data about the amount of salt they contained. Ok sounds good. Scanning down the list:

cornflakes 1 1/3 cups 240mg,
crushed tin tomatoes 100 gm 800mg salt.......and then

Chiko Roll 180gm 620mg salt.

This was then followed by:

donar kebab 400gm 1200mg, and
chinese sweet and sour 200gm 900mg salt. What the...?

In what freaky bizarro world is a cardiologist giving me a list of food recommendations that contains Chiko Rolls and donar kebabs? (For those who are interested in the salt content of spam or Burger Rings, I'll put up a copy of the whole list, if I ever work out how to scan items that is). This simply confirms the freakiness of Bob as a disorder.

When I went into hospital for intensive rehab they put me in with the cardio/respitory group. The lovely OT came in to give the introductory speal and tell me about the information groups they had especially relating to diet and exercise. I couldn't help but laugh at the look on her face when she realised that I had to increase my salt intake and I showed her the list from the cardiologist. She handed me the sheets of info, mumbled something about me probably not needing to attend the class and walked out. Yep that's right, freak girl in the hospital!!

Those of us with Bob are the antithesis of normal patients. What is bad for most, is good for us. I think I am single handedly saving the salt industry and doing my bit for the GFC. Plus its a damn good excuse for scoffing down a huge pile of fish and chips with extra salt, fully prescribed by a cardiologist!

An apple a day keeps the doctor away. I don't think so. Take one greasy, salty Chiko Roll and call me in the morning!

Cheers
Michelle