Category: Travel

“Trains, Oooo I love trains” – Sheldon Cooper

“Trains, Oooo I love trains” – Sheldon Cooper

If you have never had the chance to ride the train then you should definitely add it to your list of things to do.  Getting from place to place is always a question when it comes to painful diseases because one way or another your bound to be stuck on a plane, train, or in a car for hours.  So out of all the options for how to get from one place to another I would have to say that train is one of the best options I have tried.  To start off there is more leg room! Way easier to stretch out and keep you body from cramping and locking up to bad.  Second of all you can get up and move around in an aisle actually big enough for two people, no awkward butt in face moments when trying to get past someone.  Plus the whole experience in general is more comfortable being that there is more space for everything and bonus there is even a place to plug in your charger for your phone, computer, or even camera battery. 

I recently had the chance to take the Amtrak from Milwaukee to Chicago, and honestly I would do it again in a heart beat and plan to investigate into planning all flights from Chicago by way of train from Milwaukee.  There was no pressure with traffic and it didn’t matter what time we left because it takes the same amount of time no matter what the time of day is.  So forget having to add an hour for rush hour traffic, just get on and go.  There was easy access to bathrooms, and special seats with extra extra room for disabled persons, or those traveling with crutches or walkers. 

All in all the atmosphere of the train was much more relaxed than a plane or trying to drive in a car.  It really allowed me to just sit back and relax, type or sketch, and enjoy looking at the countryside going by.  The trip was only about an hour and a half which honestly was not that much more than if you were to drive, especially going into downtown Chicago.  What a blast, I can’t wait to see more and share it with all of you!

 

Always look for new ways to do things, that way nothing is out of reach!

Playing on the Water

Playing on the Water

For any person with a chronic disease, or rare disease, or anything causing ongoing pain, normal summer activities can seem like the most challenging types of fun.  You have to plan and plan and plan for something as simple as a boat ride.  Do I have the meds I need, did I bring the right equipment “just in case”, do I have to do anything the next day if I over do it, is there medical attention near by if something goes wrong, if there is will they be able to properly handle my condition?  This is just the tip of the question iceberg.  But the nice thing is, the fun summer activities can be done, especially with a little advice from someone who has already done it.  

I had a chance to go visit family on a lake up north for a few days.  This also afforded the opportunity to try out some new water sports.  I was always a fish, so being in the water is nothing new to me, and I had loved going tubing as a kid.  But in the last few years those things have happened less and less to the point of non existence.  So I was naturally apprehensive at the thought of getting back on the water to try the traditional summer sports, i.e water sking, jet sking, knee boarding, tubing and so on.  

There was all the normal preparation involved, make sure to pre-medicate with a good anti-inflammatory, have pain medication on had, assess current body statues for pain and points of tenderness to make sure everything is good to go.  I had been doing pretty good, nothing flaring at the moment so I just made sure I had meds ready for later and ice packs just in case.  

My first experience was with water skies, of which I have tried before and was successful at getting up and skiing. But to say the least it was really hard on my body back then and I suffered afterward.  This time I was prepared to be careful and not push myself if there was even a hint of over doing it.  Luckily I had calm water, so no worries about dealing with wakes from other boats, plus it was less hard on my knees to keep balance.  I got up right away, which of course I was super proud of, and was able to make it once around the small lake, another victory.  By the time I was done my back was a little sore from trying to hold every muscle tight so I wouldn’t fall, but otherwise okay.  After a break, some stretching and some water I had my first chance to try knee boarding.  This made me really nervous since I have osgood-schlaters in my knees, so kinda like tiny bone hooks where the doctor always hits your knee to check reflexes.  So naturally kneeling is painful for everyday activities but bouncing up and down on a board on the water seemed like an even worse idea.  But I wanted to give it a chance because you never know what you can do until you try.  I talked it over with the person driving the boat so they knew I might bail right away if it felt like it was going to be problematic.  Luckily and surprisingly it wasn’t!  Because of the high density foam on the board and more anatomical position I was sitting in, I didn’t put any pressure on the portion of my knee that I normally do and worry about.  Plus it was less stressful on my body overall and more comfortable being that I was closer to the water so If I had to bail it would be easy and less painful when hitting the water.  Plus I actually took a minute to try kneeling on the knee board on land before giving it a shot in the water which was smart since it gave me more confidence to start. 

In the end after two days and five rides I was doing pretty good.  I took a hot bath to sooth sore muscles, and dosed with my anti-inflammatory for a few days.  Not to much pain beyond what you would expect from a physical activity.   And I had a lidocaine infusion coming up so that was just good planning in case I did cause a flare the lidocaine would help prevent it from getting bad.  

In conclusion don’t limit your summer fun to the beach and sidelines.  Take a bit and figure out a way to do those summer activities that make summer worth having.  All you have to do is take a little bit of time and plan out how your going to try those activities.  There is nothing you can’t do with a little bit of planning and creative thinking. 

Minneapolis Pride and HPP: Invisible Acceptance

Minneapolis Pride and HPP: Invisible Acceptance

I recently had the chance to visit an event known to many as the main celebration for the LGBTQ+ community, Pride.  The vacation was all planned, two whole days of concerts, clubs, shows, festivals and more.  For those with HPP this can be exhausting and painful just to think about.  And for the most part they would be right.  Take a second and think about the difficulties a 28 year old with an invisible illness goes through when trying to keep up with other youngsters their own age during a massive summer event.  Starting with the parking.  If you have ever gone to a festival or major concert of any kind you know that parking can be a real bitch.  You can expect to pay a ton and walk two plus miles to get from your car to the actual outskirts of the event.  Many places, though having handicap parking, are still wholly inadequate for those with more severe and obvious disabilities.  Given that I was going through a particular rough spell with pain in my SI joint I really was hoping for something semi close and easy to walk through so I could use all my energy to enjoy the festivities.  Having been to other events I was worried after we had circled several times only to find nothing available and people flocking from miles around.  So taking the chance I wouldn’t be looked at as the typical “faker” of a disabled tag I am used to I pulled over and asked a police officer if there was any designated handicap parking.  He very polity and with a smile replied that there was a whole street blocked off for that purpose and then explained how to get there. This was my first bit of excitement, designated parking nearby, so there was a shot!  After finding the street I pleased to find a spot open immediately, near a sidewalk, and near the festival restrooms, which also btw’s had a handicap port a potty.  Normally when I put up my placard I get a sense of worry, like people are judging me and that this might be the time I come back to a nasty sign on my windshield.  But something was different this time, no looked twice and I felt immediately at home and comfortable.  

After parking we began the adventure of Pride festival.  Being that anything can happen I tend to look around first thing and try to identify staff, emergency personnel, and first aid tents.  Again I was pleased to pick out staff easily as well as officers on bikes, on foot, and golf cart, riding and walking around ensuring everyone could thoroughly enjoy their time.  This always makes me feel better for the “just in case” scenario where I fall wrong or get run into and something terrible happens requiring immediate medical attention. 

To my great joy and surprise, I was able to keep up with my friends for the whole day as we walked around.  Normally I have a limited amount of time determined by how much and when I take pain and pre meds to prepare for an eventful day.  However being that I was post Lidocaine infusion I was doing particularly well and thought I would try going without. For the most part I did great.  I never had to be the one to stop and take a break, or sit down and rest, and we didn’t have to leave early for me because of my pain.  Last summer this never would have happened, and because of my disease I never would have noticed what a great event to go to if you have a disability or need a little more security when going to festivals.  I had a blast and people were friendly and accepting wherever we went.  There were hundreds of booths and rows dedicated entirely to single subjects.  

There was everything from pet adoption, to different religions, adoption and fostering, medical care, dental care, insurance, education, the list goes on and on.  The culture was extremely diverse and truly a pleasure to have the chance to experience.  Those working the booths were always more then happy to share their product/service or simply point someone in the right direction.  Not to mention the free swag they were giving away was a major plus in some cases.  

As we wandered around what quickly began to resemble a wonderland fit for Alice I noticed the number of service dogs and ESA’s around, as well as extra seating and places to rest.  I always love to take my service dog with me when I go places as he can carry things for me if I am having a bad day, or I just need the support and a friend to help tell me when I pushing myself to hard.  But sometimes it makes me very uncomfortable in public as my dog doesn’t look much like a service dog, and to be honest I don’t look disabled. But here I felt things would have been different.  The air itself was tangible with acceptance, regardless of whatever, or whomever may be accompanying you.  

The next thing I found surprising but also awesome was the food selection.  As many people with rare diseases know there are almost always some sort of dietary guidelines or restrictions that go along with the disease.  This can mean finding food when you go out can be difficult unless you wanna have a “cheat day” and pay for it later.  But at the Pride festival there were several choices that allowed for many different diets from vegan, vegetarian, paleo and more.  I was happy to not have to think to hard about what I was ordering.  There were also plenty of places to get a drink and dispose of the garbage afterwords, but there were also no restrictions on bringing stuff in.  Given that alcohol was the one exception since the festival did provide the traditional beer tent, you were allowed to bring bottles of water or Gatorade to stay hydrated on the semi warm day. 

Later that night I was able to attend a small show put on at LUSH , a traditionally gay bar playing host to some very entertaining acts.  While enjoying the atmosphere and people watching I was able to meet some to the Drag Queens whom were there to perform.  For me this is always fun and exciting as I consider Drag Queens to be literally walking pieces of art, and have followed RuPaul’s Drag Race since the beginning.  They were amazing and wonderful people.  Never have I felt so normal and comfortable with people as I did when talking to the queens of LUSH.  In particular I had the pleasure to meet the lovely and talented Shangela Laquifa Wadley.  She approached me with warmth and smile despite how tired she must have been.  She spoke softly and made me wish I had more of a chance to sit and talk than just a quick fan to fame moment.  But despite this I was able to get a few good photos together and give her my business card directing her to my website here!  As silly as this sounds that small gesture made me feel so good.  I had just had the opportunity to pass on some knowledge, and possibly educate someone with power about one of the zebra diseases.  Giving her my card was a huge leap of faith and to be honest at 2:30am I wouldn’t blame her if she lost it or never bothered to look.  The point was she was kind and took the card, and I had the chance to spread the word about HPP to someone who matters. 

The last step in my journey through Pride was to attend the cant miss event, the parade.  For miles the street was lined with all manner of people in all manner of dress.  We had been running a little late so naturally I was concerned I might have missed the best parts but whether it was fortunate or not a “Black Lives Matter” protest in the middle of the parade street had delayed the start of the the parade by nearly an hour.  I was somewhat baffled as to why the protesters choose that place and that time to express themselves since it was interfering in an event meant to promote acceptance and equality for all.  Despite this my friends and I were able to locate a decent position where I could comfortably stand or sit and watch or take photos of the parade.  It was such a great time to see so many people openly expressing their true inner selves.  I loved being able to capture the souls of some of the parade walkers who truly shown.  It is not often that people allow us to see that intimate part of themselves that at our core defines us.  To capture in on camera was a challenge and pleasure.  

I definitely plan to attend this event in the future and I hope you all enjoy the article and the photos.  Some have been edited some are just as they were taken.

A Day with the Dogs: Outagamie Dog Park

A Day with the Dogs: Outagamie Dog Park

Sometimes taking the time to do nothing but sit and enjoy the day and surround yourself with furry friends is the best place you can be.   There are many places I have been but none that can hold my attention and fill me with joy the way a good dog park does.  I love being able to walk around and meet all the furry friends running around enjoying themselves.  Recently I visited the Outagamie County Dog Park, and it was such a treat.  This is a really nice park and great for someone needing low key exercise, but who has trouble staying focused due to boredom.  There are trails that wind through the park with mild inclines and declines.  Due to the dense patches of foliage there is always a path with shade and plenty of places along the trails to sit and rest if you need to.  There are a few common areas which are mostly open but with lots of seating in both the sun and shade.  I truly loved my time here and spent nearly four hours just interacting with the people and their dogs which ranged in all sizes, breeds, and ages.  This is a no fee park but one that does take donations to help maintain it.  I even had the chance to see some service dogs come in to blow off some steam.  I highly recommend taking the time if you have a dog to find a nice well maintained dog park in your area and spend a few hours here and there disconnecting from the regular dramas of life and learning to enjoy it the innocent way our four legged furry friends do. 

If you live in the area take some time to come and visit!

http://www.outagamie.org/government/n-through-z/parks/dog-park

 

Skydiving Cause the Skies the LIMIT!! Skydive Midwest

Skydiving Cause the Skies the LIMIT!! Skydive Midwest

So if you have been to this page you know that my motto is #nolimits, do anything, be anything, go forth and accomplish whatever your heart desires.  Well for some of us that includes the adrenaline of free falling from an airplane at over 120mph nearly 14,000ft off the ground.  I recently had the chance to spend some time at one of the best sky diving locations in the Midwest, Skydive Midwest.  I spent the day observing, asking questions, trying desperately to talk myself into going up in the plane, and generally getting to know the people who deal in pure adrenaline. 

When I first thought of the tandem jumping, where you are strapped to an experienced jumper, I was most concerned with the landing part being, shall we say a bit jarring.  Given they do slow you down before you come crashing back to solid ground, it still seemed like it could be dangerous for someone with “soft bones”.  So I watched, and watched, and watched some more.  I got up close and personal and was pleasantly surprised to see how carefully the instructors put their jumpers down, many not evening landing on their butts but actually just lightly standing once the instructor touched the ground.  Some did come in shall we say sliding, legs out in front, but even then the instructor took the brunt of the landing leaving the companion jumper to essentially sit in their lap.  I watched dozens upon dozens of these jumps and not a single person had pain or injury following their landing. 

Next you may be concerned about what happens when you pull the chute radically slowing your decent.  Well part of what you are going to feel has to deal with the harness you are strapped into.  There are two straps that circle your thighs and essentially cinch up into your crotch (sorry guys no avoiding it).  The only real issue with this comes if you have really bad hip problems because when the chute is deployed you will feel some pressure on your hips, but it is kind of like sitting in a really awkward chair with no middle to the seat.  The rest of the straps go under your arms and around your middle then one over each shoulder to keep you securely attached to the instructor.  Once the chute is pulled there is a very slight jarring but nothing major.

So now you may think what the heck happens if the chute doesn’t open!  Well that is why they have a reserve.  I even had the chance to see someone have to do what is known as a cut-away where the first chute fails, is cut away, and a second chute is deployed.  When I asked staff about this they said that it happens on occasion for unknown reasons, and that it is no big deal.  Plus I watched as highly experienced staff took great care in re-packing each chute that is used to make sure every experience is not only fun but safe.

Never in a million years would I have been tempted to try this ultimate adrenaline rush.  But after spending the day and talking with the people I am now prepared to go for it.  I am committed to my motto #nolimits, so I better follow through.  Wish me luck guys, I’ll update this when I have had a chance to soar through the skies myself.

For more information visit the following website:

http://www.skydivemidwest.com/

 

Lidocaine Infusions: New Hope for Pain Management

Lidocaine Infusions: New Hope for Pain Management

As a person suffering from a chronic and rare disease I am always looking for the next thing that will help me deal with the daily pain and fatigue my illness causes me.  Recently I had the opportunity to try a relatively new therapy known as a Lidocaine Infusion as a way of treating my pain.  

To start let me tell you a little about what a Lidocaine Infusion is.  An infusion is the administration of medication through an I.V line directly into your bloodstream.  This route allows for medication to be administered quickly and systemically.  In other words the medicine quickly goes to all areas of your body, versus something local like an injection which tends to keep the medication in the specific area it was administered.   Lidocaine is a numbing agent that most people have heard of in the dental world or if you have ever had to have stitches or mole removal.  It is the drug commonly injected at the site of a procedure to numb the area.   Lidocaine comes in a lot of different forms in a lot of different strengths.  So what may be used by a dentist or an ER doc is not necessarily going to be the same thing you find in over the counter lidocaine patches.  

So when you put it all together you are essentially receiving a numbing medication systemically to control pain.  Now there is a slight catch with this type of procedure.  Lidocaine has a very short half life and what that means is that the average person will process all the medication in a very short period of time and no longer feel the effects.  Why can this work then you may ask?  Well when a person has been in pain for a long enough period of time it is possible for those nerves to essentially “learn” to be in pain.  Just like how a computer sometimes freezes up so do your nerves, and like a computer they need to be reset.  Lidocaine works on the nerve pathways to the brain and calms them down so they no longer transmit the painful feeling to your brain, or they transmit less of the feeling.  Chronic pain sufferers can also continue to have pain after the reason for their pain has been removed.  This is why Lidocaine Infusions can be a useful tool in pain management.  

So on to what I personally have experienced with the infusion.  Given that this works on your nervous system you are required while receiving the infusion to essentially meditate, clear your mind, and ignore all outside stimuli.  This is how it is supposed to work best, put yourself in the calmest place possible so the medication can do as much work as possible. Once you begin receiving the infusion whichever hand or arm you receive it in will begin to feel cold and kind of numb.  This is due in part to the lidocaine causing the numbing and saline solution it is administered in being colder than your internal body temperature.  So bring a comfy pillow and blanket.  I was told I may feel sick to my stomach during the infusion but to be honest I didn’t have an issue with this as I am used to the feeling and have worked on breathing exercises to suppress the icky pucky feeling.  Basically after that I just rested till the medication was done being administered.  At this time when I was starting to move around and get unhooked I did start to feel a bit lightheaded and heart started racing a bit.  Again I just took my time and a few deep breaths to calm myself and after a few minutes was good to go.  I could tell right away that my pain was better.  The achy feeling that usually resides in my joints was gone and I was really excited.  However I was told by the doctor that everyone feels that way right after and the real test would be seeing how I felt after a few days, by then which the medication would be completely out of my system.  I went home and had the expected feelings of being tired, but not so severe as to ruin my whole day, and not the drugged tired I was anticipating.  Needless to say I slept great that night. So generally if you are going to get any benefit from the medication you will know within a few days, then it’s just a matter of how long you will get that pain relief.  

For me it lasted about two and half weeks and made the almost 36 hours of traveling I did to get to Bali easily bearable.  Keep in mind that the last time I had traveled a month prior I was on a plane for only about three hours and suffered a major flare afterwords.  I found that not only did I have less pain in general but when I did need to take extra medication I could take half or less of what I would normally have taken and get the same results.  This was very exciting since I am all for anything that means I can take less pain medicine to function at the same level as others.  

The time spent getting the approval, the overall cost, and the time spent getting and recovering from the infusion were well worth it for me.  But remember that this type of infusion does not work everyone.  Some people receive no benefit at all, but in my opinion it is something worth trying if it can lead to a better life.  Try anything once they say.

For more information on Lidociane Infusions please visit the Therapies section of Articles on this website. 

The Villages: Florida (A different kind of vacation)

The Villages: Florida (A different kind of vacation)

Just because we suffer and have this crappy disease doesn’t mean we have to be home-bound.  Yes traveling can be a bit of task with having to carry extra medication and allow for extra time, not to mention access to medical care where we’re going if something happens.  But I have stumbled upon a rather unique type of vacation that I would not have even considered interesting if I didn’t have this disease. 

I’m young, 28 years old, so the typical Cancun, drink, dance, stay out and party all night vacation is just not realistic.  Spending hours in a car going from place to place taking chances wherever you go.  Sometimes being young on the outside and being young on the inside are two totally different things.  I frequently say “I’m 28 on the outside but I’m really 80 on the inside”. 

Sooooooo……why not vacation in a retirement community?  Sounds dull right? Wrong! I recently had an opportunity to visit The Villages in Florida.  What a great place for someone who wants all the fun of being young and all the convenience of being older.  The entire community is laced with golf cart paths allowing for a very pleasant and comfortable ride wherever I went.  Even better, there is always a place to easily pull over, get out and stretch, or readjust.  The entire community is packed with beautiful golf courses not only teaming with interesting characters, but the wildlife is unreal, and tame enough to get some good pictures because they are used to the hustle and bustle of the regular residents. 

I spoke with residents of the community and learned about the great healthcare system in place.  There are AED’s located all around every neighborhood in case of emergency, and EMS is never more then a few minutes away.  Not to mention you the patient are never more than a few minutes away from a more then capable hospital.  Should something more catastrophic happen and you need to be flown out, there are always places for the helicopter to land due to the large number of cul de sacs, flat golf courses, open spans of road and so on.  For someone who can potentially step off the curb and cause major damage to themselves I found this to be of great comfort, because lets be honest you never know what’s going to happen and when.   And something that must not be left out is how handicap accessable everything is.  They have designed this place for an older generation but it also works great for those who try to avoid things like stairs.

There are several area hotels to stay at not to mention the great number of seasonal rentals should you wish to have your own home for a few weeks!  Another major comfort since it allows one to store their medication in more reliable refrigerator and freeze cold packs for the ride home. Plus there are some top quality grocery stores so you can easily stick to whatever type of diet you may be on.  Each person is able to obtain a visitor pass that lets them into the various sub-communities and their wonderful amenities.  There is everything from nightly dancing in several of the town squares, to Polo match’s, bike races, shuffle board, bocci ball, horseshoes, dog parks, golf lessons, concerts, lavish movie theaters, weekly events, farmers markets, the list goes on and on.  You can even download The Villages app and get all the calendar event times and locations, GPS for your golf cart, and more.  This place is busy, and not, all at the same time.  I loved eating at the unique country clubs and restaurants  and all were priced SUPER WELL!  Not to mention that majority of the places had menus with meals spelled out so you’re not guessing what might be in something.  It was great because no one seemed in a hurry but everyone seemed active, it was like my insides fit right in even if my outside didn’t.  The people here despite being mostly on the older side, were as full of life as any younger community and more then happy to socialize. 

So why not try a change of pace and enter the “bubble” that is The Villages.  Even if you are traveling with little ones there are activities for them since it is not uncommon for kids to visit their grandparents.  Not to mention you’re only an hour from Disney Land.  The days are warm the nights are cool and there is always something fun and new to experience.  Get lost on your golf cart and go find an alligator chilling on the golf green.  Remember you don’t have to be limited to what you think you can do.  Every person with or without this disease has #nolimits, and it’s nice to get away someplace where people understand pain, but also the pleasure of living. 

For more information on The Villages visit:

https://www.thevillages.com/

If you’re young take a chance and live like the older ones do, and if you’re older, see how you could be living!

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.