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:)