If I'm Glowing, Just Turn me Off.

In the last two weeks I have had a head CT, a sinus CT, a chest x-ray and a KUB (Kidneys Ureter and Bladder.)  After being exposed to all that radiation I wouldn't be surprised if I glow in the dark!  But I'm hoping it will not be in vain.  After all, we don't do these things because they are easy, we do them because they are worth it.

I guess I do have a point to make.  All things being equal, even when you are pretty good having a chronic disease is still pretty time consuming, let alone two.  I have had a pretty busy couple of weeks and it's not letting up just yet.  To let you know as well as the x-rays above I have also had 4 appointments with specialists, 3 GP appointments, 2 physio appointments, an ECG and an echocardiogram.  And left for this week is a 1 physio appointment, my IVIG treatment, 1 specialist appointment, a pulmonary function analysis, all the blood work and urine analysis I talked about last week and a 24 hour urine test for my nephrologist.

Now it might sound like I am having a bit of a whinge, but I'm trying to illustrate my point.  At the moment I am pretty well.  I recently had a flare up of my CIDP, but aside from that my depression symptoms have never been better, my tremor is under control and I am asymptomatic with my kidney stones and according to my x-ray I am stone free.

I understand that a few of these items are to do with me trying to get on the trial in Chicago, but if it's not that it's something else.  So spare a thought for the chronically ill.  Try doing a full time job with all that going on.  On top of that, there is living with your disease that is also tiring.  And all the other inconveniences.  Remember your pills, what you can eat, what you can't eat, what you can and can't drink, exercises etc.....  Oh yeah, then there is also all the research into your symptoms, disease(s), treatments, side effects etc.....

Living like this is a full time job.  It's exhausting and tiring.  And I think I talk for all patients when I say this.  We didn't ask for are disease, yet we have no choice but to deal with it.  And I have to say that most patients I have had the pleasure of talking to are very brave and resilient.  But patients are  people too, and just like all people they have bad days and bad moods.  So if we seem irritable, lethargic, grumpy or just generally pissed off, cut us some slack.  We don't mean it and we are dealing with a lot.  Until next time, stay well:)

Hero!

This guy is a dead set legend!  I preach about taking control of your health care and being responsible for it, and I like to think I practice what I preach.  But this bloke puts me to shame.

His name is Kenneth S. Spriggs, and his life has been tainted with Eczema, Asthma, Crohn's disease and depression.  But it is what he has done that is quite impressive.  He has taken his entire history, and mapped out all the drugs he has taken over the years.  The chart he created is illustrated below:

The data he collected came from nearly 20 sources and was over 600 pages.  What is most important is the trends he managed to learn from this and take to his doctors which would enable a more effective treatment plan moving forward.

I have to say that I don't think I would have the patients to scour through my medical history to display a graph quite like this one, but it has got me thinking that I should collate some of my data and display it in a graphical form so that I might learn something from it.  I would encourage you to look at his blog too.  http://diyehr.com/

Until next time, stay well:)

MedTees

There are plenty of funny t-shirts to buy at this site, which was created by cardiologist Westby G. Fisher.  The site was created to increase patient empowerment, and the proceeds go to support research in medicine.  This is one t-shirt that caught my eye.

You can see more of their merchandise at www.medtees.com.  Stay well:)

Inspirational

This isn't just inspirational, it tells a story of strength overcoming adversity.  Francisco, you are a champion!

Lawyers, back off!

I was on a patient chat room the other day and a fellow patient mentioned a friend who had had a operation called the "liberation procedure".  The patient in question had multiple sclerosis (MS), and as CIDP and MS are quite similar (both demylenating and auto immune) my interest had been peaked so I did some more research.

Unfortunately, I have to admit that I don't think that the liberation procedure would be suitable for CIDP patients as it is supposed to relieve pressure on the brain stem by widening the veins in the neck.  The demylenation in CIDP patients is in the peripheral nerves.

But I was astounded by some of the things I read.  But before I tell you what let me give you a little background.  The liberation procedure is basically angioplasty in the veins in the neck.  It is a common procedure to treat other vascular problems.  It is considered relatively safe.

Yet, in many western hospitals the procedure is being disallowed.  Why? you may ask.  Because the evidence points to the procedure not working?  Or maybe there are not enough doctors trained in the procedure?  How about the hospitals are ill-equipped to perform such an operation?

All reasonable answers, but all wrong.  The real reason is because of the lawyers protecting hospitals and doctors from litigation.  And what do lawyers know about medicine?  Nothing.  What do they know about treating sick people? Nothing.  And what do they know about being sick?  Nothing.  And no.  That common cold you thought was the mother of all cases of swine flu doesn't count.

MS is a debilitating, degenerative and eventually fatal disease.  Let me try and paint a picture for you.  You live in a wheel chair, you cannot feed or bathe yourself.  You can't even wipe your own bum, and you are only going to get worse until you die.

But there is hope.  You hear of a procedure that has the potential to halt the progress of your disease, maybe even reverse it.  You even find a qualified doctor prepared to do the procedure for you.  But wait. There is a problem.  Because a lawyer is scared of the hospital being sued he puts a stop to the operation.  You, as the patient are now condemned to a life of disability, and your one hope of wrestling back some form of independence and quality of life has been squashed by a lawyer.

If lawyers are scared of being sued for malfeasance, maybe as patients we should sue them for nonfeasance.  If failure to act when you have the means and capability to do so leads to someone having a substantial decrease in their quality of life, surely they should have a right to seek reparations?

As a patient I think I should have the right to decide my own destiny and choose my own treatment options.  I take the risks and if something goes wrong, I pay the price.  I am of sound mind, and I can make my own decisions.  I don't need someone to do it for me.  Especially someone with no idea.  Lawyers, back off!  Until next time, stay well:)

Depression - A personal note

Looking back through my blog I noticed I had left a couple of topics incomplete.  One of which is depression.  You may have thought I finished the topic, but I wanted to do one more thing and give you a personal reflection.

I have found this topic hugely confronting.  From the outside, I may look like a fairly open person, but emotionally I have up until recently been a closed book.  But I made myself a promise that when I wrote this I would be brutally honest with the way I felt.

I took me over a year to suck up the courage to write on the topic of depression, because I knew that if I was going to keep my promise to myself it would be akin to me opening Pandoras' Box.  And although it might not look like much to others I have done something that I never thought I'd do, or be able to do.

But I have, and although it has been difficult (really difficult), it has been an absolutely worth it.  Shakesandstones has given me an outlet to release some of my emotions and potentially help others in the process.  It has allowed my to have purpose and fulfilment, and I have really enjoyed writing it.

Well, I hope you have enjoyed reading.  I will continue to write so until then, stay well:)

Update

I have a bit of a skip in my step today.  I feel that things are starting to get moving, but I have to admit, it isn't going to be easy.  One of the things I am trying to do is to 'pre-qualify' for the stem cell transplant whilst I am still in Australia.  I don't want to go all the way to Chicago, only to find out that I am not a suitable candidate and I get sent packing back to Australia with my tail between my legs.

So right now I have been asked to do a lot of tests.  And I mean a lot of tests.  I have listed them here:-

Blood Work and Urinalysis

Immunoglobulins quantitative IgG/M/A

Lymphocyte phenotypes (CD3,4,8, CD 56, CD 20)

Varicella zoster virus (VZV)

Herpes simplex virus HSV

Cytomegalovirus by polymerase chain reaction (CMV by PCR)

Urinalysis (UA)

Uric acid

Fibrinogen Antigen Assays/Prothrombin Time (PT)/Partial Thromboplastin Time (PTT)

Anti bodies; MAG, GM1, GM2, GD1b, sulfatide, GALOP

Serum protein electrophoresis (SPEP)

Immunofixation Electrophorisis (IFE)

Anti-Hu anti bodies

Cytoplasmic antineutrophil cytoplasmic antibodies (C-ANCA)

Antinuclear antibody (ANA) panel to include Anti DS DNA, SSA, SSB

Anti-gliadin

Anti-transglutaminase

Rheumatoid Factor

C-reactive protein (CRP)

Sedimentation rate

Angiotensin-converting enzyme (ACE)

Cryoglobulin

Triiodothyronine, Thyroxine, Thyroid-stimulating Hormone (T3, T4, TSH)

Thiamine (vitamin B1)

Vitamin B12

HIV

Hepatitis B 

Human T-lymphotropic virus Type I (HTLV-1)

Glycated hemoglobin (HbA1c)

Prostate-specific antigen (PSA)

Other Tests

Pulmonary function Test

Echocardiogram

CT sinus’

EKG

Chest X-ray

MRI

Lumbar puncture

I have been very busy getting my head around what they are all for, which has been really hard seeing as though my GP didn't know what about a third of them were.  Luckily, Dr Google seemed to have information on most of them.

Although the task is daunting, it is nice to finally feel like I am doing something.  The worst feeling is just standing still waiting for something.  An appointment, a test, an answer, anything.  Anyway, forgive me if my blogging is a little light in the short term, I've got some work to do!  

Tomorrow and Monday I will get the other tests done, and hopefully by then I will have figured out the blood tests so I can get them done, and have the results to Chicago by the end of next week.  But I know how it works, I will settle for by Christmas.  The other benefit I have is that I have already done the MRI and lumbar puncture ages ago, so these results will do.

I will keep you all updated as things progress.  Stay well:)