Author: wsdelzer

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.