Month: April 2017

The Power of Paws

The Power of Paws

Whether you have HPP or not, any person suffering from a chronic illness, or chronic pain should, in my opinion, have at least one dog.  When you feel like crap and like no one understands you can always count on your furry friend to be a comfort.  My dogs know when I am in pain and when I have reached my limit almost better than I do.  If I have been working hard during the day and am starting to feel tired by dogs know better than me that it’s time to quit.  My big Labrador, despite being young, will go into a very calm state and spend much more time snuggled up right next to me quiet and warm.  He leans on me providing that warm comforting pressure that makes me feel like it’s okay that I can not keep going even if the people around me are.  I love my family, and when they tell me it’s okay if I have to stop, a part of me still feels guilty because they keep working while I lay down.  It’s nothing they do and there is nothing that can be done to correct this as it’s all mental.  But no matter the circumstances my dogs relieve me of my guilt and make me feel like its okay, they also assure me that resting is what I should be doing because of how they act.  Studies have also shown how beneficial having an animal around can be for people who suffer from chronic pain and or anxiety along with a whole host of other issues.  They provide a reason to get up in the morning and a reason to move around on my very worst days.  They give me nonjudgmental companionship and love that is unmatched by that of any human.  I’m not saying their love is better, only different.  They love in a different way that fills a different void, and to me that is a huge comfort.  

No one, including myself, tells me better when to stop than my dogs.  A young dog does not lay down and relax for hours at a time out of nature.  I am convinced mine does it because he knows I need him to be doing that.  

If you suffer from a chronic illness please look into obtaining and training a service dog so you can take the comfort and support you need anywhere with you.  A good place to start is taking your pup to local areas and familiarizing them with sounds, smells, people and such.  Then take them for their Canine Good Citizen certificate.

                Edgar my fur baby
My Friend Pain

My Friend Pain

Two am and still awake. Yeah you all know that feeling, the feeling of frustration because you need sleep but every fiber of your being is vibrating. It’s like every cell is doing its best to escape your body and run away from the pain inside.
Pain, my old friend who never really leaves me, no matter how many times I think I have gotten far enough away from it that maybe just maybe I can take a chance at a more normal life. Sadly no this is not that time, tonight I lay here frustrated and anxious. I had done so well almost 48hrs no pain meds, good for me. But my will was just not strong enough this time and after more then four hours of tossing and turning and attempts at a more benign solution, I caved and took some pain medicine. But why is it whenever I do that I feel guilty? Its almost like giving in or giving up. I know that society has made it “acceptable” to take medication for well known, non-painful diseases, but why is there such a stigma around people who need pain meds to live normal productive lives. My pain and anxiety are made worse by my mental loop of trying so hard not to take anything, suffering, then finally giving in and taking something, then feeling guilty because I did. Sometimes the worst and most painful part of a disease that causes chronic pain is the struggle to control it mentally. I guess it’s not as bad when you know early in life and don’t know any other way of being, but when you’re a full blown adult with life experience and then find your world turned up side down it’s so hard to adjust to thinking of yourself as “different”. I keep telling myself I have no limits, I can do anything I just have to do them differently, but even that can be exhausting to the point where every once in a while I just have to have a meltdown.

Exercise

Exercise

Something I have struggled with is exercising and staying in shape for as long as I can remember.  It wasn’t that I couldn’t get in shape, but rather it was much more difficult, and I always had to fight the pain and fatigue because I just did what I was told which turns out was not the right type of training for someone with HPP.  Over the years prior to diagnosis I started to learn what things I could do more of and what would cause the most problems.  Another key thing I learned is to have access to a hot tub or sauna to jump into after a workout to loosen and relax the muscles preventing excessive stiffness and soreness.  Also knowing to ice problematic joints after each workout is critical for a successful exercise routine.  One of the ways to do this I had found to be not only time efficient, but quickly beneficial is to go for a cryotherapy session after a workout.  With this I am able to essentially super cool my skin temperature and let the cold seek into my deeper tissues more gradually.  It also releases a blast of serotonin, the hormone that makes you happy, so you feel extra good for several hours.  Also knowing when the appropriate time to take NSAIDS is important to maintaining good physical health.  You may have to get creative with your exercises if you can not travel to a gym but efficiency and accessibility are the name of the game.

The list below is of some key activities one can do along with notes and definitions

Weight Bearing: Feet and legs support your weight

Weight Lifting: each muscle group twice a week, low impact, machines not free weights less chance uncontrolled fall or join failure, therabands in varying elasticities.

Dancing: can be a fun controlled way to obtain cardio but also utilizing weight bearing

Swimming: the ultimate low weight bearing activity that conditions heart and lungs and also allows for a cardio and semi cross fit workout building good muscle mass

Balance Improvement: Tia Chi is a way to improve your balance in a controlled setting, fragile bones mean you have to be more careful, and means you need to have better balance to prevent falls

Simple calisthenics: repetition of a troubling activity such as sitting and standing, repeat motion until tired as many times a day as tolerable

  • Need to maintain a good balance between strong muscles to keep the body strong and weight bearing exercises to keep bones strong

Below is a website that provides a list of workouts for person with fragile and soft bones, or for anyone needing a low impact workout.

http://www.nmbreakthroughs.org/fitness/safe-workouts-for-fragile-bones

Marathon vs. Sprint (Activity level with HPP)

Marathon vs. Sprint (Activity level with HPP)

Many people with HPP know the concept of completing work over time slowly due to pain and fatigue, a common side effect of the disease.  The other end of the spectrum is when we finally get energy and no pain we are able to accomplish more in a few hours then others are able to complete in a day.  You learn ways to do things more efficiently, safely, and with minimal consequence on the body.  The concept of work smarter not harder is a hard won but well worth it lesson if one can do it.

For example, I had a bad spell the night before last and was basically unable to sleep from 930pm till 0400am. I finally managed a few hours and after waking up feeling drugged I got up and tried to have some breakfast and good cup of coffee.  But that would just not be enough so back to bed I went for a few hours and finally managing to get out around 1245 in the afternoon.  But magically upon waking up I had no pain and my energy, though low, was no longer drugged feeling and manageable.  So I got up an started on house work, because I don’t know how long I’ll  be up or how many good hours I’ll have before another crash so I pack all the work I can into the few precious hours I have.  People who do not suffer from a chronic painful illness will never understand what it is like to easily accomplish the work though small, needs to be done on a fairly regular bases.  They take for granted the amount of energy both physical and mental that it takes to complete simple tasks such as laundry and dishes.

I do not live a normal schedule, I sleep when I can, work when I can, run errands when I can, travel when I can.  Though my life is run by my disease I do not let it limit what I can or want to do.  I just don’t always accomplish things in the same fashion or at the same time as others.  I live my day in thirds usually.  Kind of like living three mini days in one, which allows me to sprint with my energy and accomplish what I need.

Food

Food

Diet can be a controversial subject with any disease.  For me a low Calcium, vitamin D and Bisphosphonate diet allows my body to feel better and work better.  With HPP your body does not properly utilize the materials it has to build bones and as such you can acquire things such as calcium deposits in places they just don’t belong.  This can be a hard diet to follow because you don’t want to go without these things, every person needs some, but when you start reading food labels, you start noticing how many none organic products are fortified with all those extra vitamins and minerals.  Something that would be otherwise benign becomes problematic when one small eight ounce glass of juice or milk is 1/3 my daily value.  When you don’t need to follow an odd diet you become more concerned about the calories, fat, protein, and carbs in foods, which is easily judged and commonly known.  When you have to study every label and even look up the content in certain unprocessed foods, it can double to triple the time it takes to shop for food, and double the cost.  Having an easily accessible nutritional app on your phone can help make this process quicker and less painful if not all the nutritional content is listed.

Travel in the Air

Travel in the Air

Traveling with HPP can be a bit of a trick.  The average person makes sure they have the basics, medication, clothes, snacks, tickets if needed.  For me it takes extra planning.  For example when I fly I always show my Softbones Identification cards when getting my seats.  Usually this allows me to get a seat in a better location such as the very front or back of economy or will allow me to be seated in a row by myself if possible as well as having the aisle seat.  These things are important because I know I cannot sit on an uncomfortable plane for more then an hour or two, so it important for me to be able to get up stand, stretch and move around as much as possible without disturbing the others in my row.  Another useful tip I learned recently when traveling is that I can make the plane seat more comfortable by utilizing three of the small on board pillows, two to sit on for extra cushion, and one behind my low back for extra support.  By utilizing these few tricks I was able to make the near 16 hour flight to Bali Indonesia.

Traveling with the life changing drug Strensiq is a whole other ball game.  Depending on the airport it can take an extra 30-45 minutes just to make it through security.  Because there are no studies on whether or not the airport x-ray machines affect the medication it is advised that all patients have their drug hand inspected.  Although there is some discussion over this I do not personally wish to take any chances with a medication costing around $1.7 million a year.  Because I have asked for my medication cooler to be hand inspected I have had varying degrees of difficulty.  Flying through Minneapolis International Airport I was sent through the metal detector twice and then the body scanner, then a brief pat down, then a detailed pat down, and all my belongings from both my bags were removed, ion swabbed and placed in bins for all to see.  So at this point I basically felt like a criminal and did not understand why all my belongings needed to be hand inspected since they all went through the x-ray machine except for the medication cooler.  After discussing this with some fellow HPP’rs I learned this was not an isolated instance and that others in the young adult age range had experienced similar and worse events.  One young woman had all her belongings and all her husbands belongings gone through.  I ask why? I must look like a drug smuggler being that I am a young, not unattractive white female so obviously I am hiding something.  Now on the other hand I have also had the complete opposite experience, and in particular when going through international airports.  I have gone through the same process with the security team only hand inspecting the cooler and waving me on through.  I was shocked in these cases as I was traveling with my husband, and as such had planned ahead for him to take my extra bag and go in a separate line from me so we both didn’t get harassed.

The last little bit of information I have is to make sure you bring good quality plastic bags.  No matter how good a cooler you use to transport your medication anything can go wrong, but you can always get your hands on some ice which will keep the medication at about the right temperature in a pinch.

So the long story short when flying with medication be prepared for delays, don’t be afraid to ask for accommodations it can only help you, and make sure your prepared for airport delays, cancellations, and other obstacles.