It’s Not So Bad, If You Enjoy Walking into a Cactus.

 

This part’s a little gross.  If you’re eating, you may want to skip to the next section…

Over the weekend, I had a sore on my foot.  It turned out to be a blister.  My original fear was it was one of those lovely calcinosis sores and luckily, it wasn’t.  It did become infected, but it was an external infection, so  I was able to soak the infection puss out.  Then I removed the dead tissue with sterile small scissors found in suture removal kits, called debreeding. Debreeding must only be done by a trained healthcare professional.  (Remember, I am a Wound Care Jedi.  I was shown how to do this in 1996 and I  have nearly 20 years of experience. DO NOT TRY THIS AT HOME)  If you visit your doctor, you can ask for a referral to a wound care clinic (or something like it).

 

Beneath the floppy dead tissue of the blister, was beautiful  healthy skin, instead of empty space and more fluid I have found  in hundreds of sores on my hands.  This tells me my feet are getting the nutrition they need from blood.  Now that a hospital stay is not in my future, I can focus on preventing further infections.  It started as just a blister, but it became infected because I have been wearing flip flops around the house and outside.  The bacteria that infected my blister may have come from needing new flip flops, or dirt and crud on city streets.  (ewww)  Most peoaple can wear flip flops, but I am on immunosuppresant drugs and sometimes washing my feet is not enough.

 

Time to Heal 

It would be ideal if I could sit here with my feet up and not move, but that is unrealistic.  Not only because I have responsibilities, but getting up and moving around helps my attitude, even when painful.  My experience has been that healing is more painful that the infection, but if I let pain keep me down all the time, I wouldn’t have moved for the last twenty years.

 

When something is painful, I classify pain as a type, and base my execution of activity on precautions and adaptation needed.    I don’t have a set classification scale, because it has changed over the years because every now and then I get a type of pain I have never experienced that requires my getting use to it before classifying it, but here’s an exapmle of the types of pain classification I use:

 

1.  None.  Haven’t experienced this one more than a minute or two at a time.  I equate “none” to unstable synthetic elements that have half lives that range from a few milliseconds up to a year.  Short lived, but does exists.

 

2.  Background Pain.  Present, but hums in the background with little interference in daily activities that are not limited to occasional a three second “pain face”.  Yes, it hurts but I can tune it out.

 

3.  Manageable.  Pain that requires pain medication to function.  Funtion-ability returns once the meds kick in and returns pain to status of background pain.  Rarely does pain at this level return to “None”, because the medication is strong enough to take the edge off, not dope me up.

 

4.  Ouch.  Needs pain medication and rest.  Pain medication levels required to knock the pain down to none and rest is required until activity can resume at a back ground pain level.  This usually takes a day and a half.

 

4.5  Holy Ouch.  Infection or injury needs to be checked by a doctor and treated with antibiotics.  Possible request for stronger pain meds.  I made it half a point higher because there is a fine line between ouch and Holy Ouch.

 

5. Level 5.

 

Pain is so high at this level, it requires a name in bold font, a picture and no less than a morphine drip.  Whatever is going on requires a trip the the doctor or  emergency room, that usually results in hospitalization.  With a Level 5, I would be in less pain had I run naked into a cactus.

 

Level 5 has become rare for me because of my ability to prevent injury, or early detection of infection.

 

 

Current Condition: Ouch.

The degree of this pain is mostly tolerable, but because of the location, I must rest more than I normally would.  It’s much easier to guard a hand than the bottom of my foot.  So today, I will spend it resting with my foot elevated.  This means when I do walk today,  I will walk a little slow.  Every now and then I will make a face, but other than my foot, I feel great, so it makes this workable.  And since resting all morning, I feel better.  I know that more rest today will result in faster healing because the skin the bottom of my foot will not be disturbed that much.

 

Tomorrow, I have a doctor’s appointment with the rheumatologist who was concerned about my ability to be able to shave.  Her mind is in the right place.  Had I read my chart from a doctor’s perspective and never met me,  I would not have expected someone so active to bounce into my exam room.

 

Helpful Healing Practices. 

Times like these when just one variable can turn tip a situation into a full blown hospital stay, I pay attention to things I can change, like diet.  I stay away from junk food.  My diet will consist of healing foods high in protein.  I will stay away from processed foods and drink lots of water.  I know what foods increase my chance of swelling and slow healing through experience.  Everyone’s body is different.

 

There is no secret to managing a chronic illness and living longer with one.   I am not a doctor, and I can only share with you what has worked for me.  Being a vegetarian is not one of them.  Without animal protein, my skin breaks down.  Soy protein in things like tofu or shakes increases my inflammation.  Sometimes it’s luck.   Most of it is as healthy a diet as possible, exercise and outstanding access to the healthcare I need with no financial barriers provided by The Veteran’s Administration.  I have to fight for things at times and even kick down a few doors, but because the VA system is a socialized one, it is not limited when I advocate for myself.

 

Pep Talk.

To fellow patients: don’t give up.  We have to fight for treatment.  Yes, it sucks but complaining will not solve this.  We need to get the information to the person who is blocking us from getting the treatment they need.  It’s hard not to make it personal.  I have a lot of practice loosing my cool.  It took me years to work from a position of, “This person does not have the information he/she needs.  It’s up to me to get it to them.  And I have to be patient and persistent.”  I spare no use of foul language at times talking to myself about this, and yes I consider that a coping mechanism.

 

 

Chronic illnesses are not always the cause of death.  Sometimes it’s financial resources.  

One reason I shout about healthcare reform and politics, is because I know that I would be dead had I not had the access to healthcare I do.  I know that many other patients with scleroderma have died because their insurance would not approve the best possible treatment, only the least expensive.  And it’s not just scleroderma patients.  I’ve read about Lupus, sarcoidosis, MCTD and too many diseases to name here who have died because of financial barriers.

 

So, if anyone needs me today, I’m relaxing and watching some TV with my feet up.  Have a great day!

 

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