Author: Annalise Delzer

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

 

Fight for a Job I Love

Fight for a Job I Love

Never in my life have I been told I didn’t get the job after I had been basically guaranteed it.  Never has my medical history or medications been an issue.  I work in EMS, and I’m good at it.  I love to help people and work with patients.  I know how to make someone feel better when they are experiencing one of the scariest times of their lives.  Never did I think that I would not be able to work in the field I was put on this earth to be a part of. 

But sometimes life has a way of kicking you when you’re down, and turning you in a different direction.  God knows it’s happened to me more then once. Every time I get kicked I somehow manage to pick myself up and start over.  I don’t know how that this point because if I was humpty dumpty there would just be to many tiny pieces to try and put back together again.  But there is also an ancient Chinese practice that says when something is broken you do not throw it away as though it no longer has value, you mend it with gold, and make it better.  So I guess I can also be seen to be made of mostly gold from the number of times I have been mended.  

Today after feeling like there was no way I could pick myself up again I had a few things happen that renewed my strength in the fight I have to live my life fully and help others to do the same.  

The first thing was having a Lidocaine infusion this morning and even if the effects last only a few hours, I got the chance to remember what it feels like to live without pain.  I was so happy I could have cried because I didn’t realize how much pain I had been carrying around with me for so long, and how heavy it had gotten.  I smiled and it felt good, I stretched and nothing hurt, I napped and didn’t wake up with something in pain.  So I am grateful for this day because it reminded me I still have some fight left in me.  

The second thing that happened was I came across a young woman, deaf since the age of 18 from a connective tissue disorder, competing in a singing competition of all things.  As I watched her video I could feel the hairs all over my body stand up.  She sang beautifully on stage barefoot to feel the vibrations from the bass to keep time, and took ques from her interpreter down by the judges.   This is someone who gave up on something she loved for many years and then somehow found the strength and determination to make it work and reclaim the love she had lost so long ago.  I decided right then that this would be the video I would watch the next time I got kicked, the next time someone told me I couldn’t or wasn’t able to.  Because this girl is living proof of living life without limits!

Watch this girl and know you can do anything!

Being a Victim of the “Opiate Crisis”

Being a Victim of the “Opiate Crisis”

I am a victim of the opiate crisis.  No I have not lost any friends or family to drugs, and no I am not, nor have I ever been an addict.  But the war on opiates has more than one type of causality.  I have spent the last year trying to get a job in my area (so within an hour drive) in the field that I have dedicated my life to, emergency medicine.  I have gotten a bachelors in health sciences, taken many classes pertaining to medicine, obtained my AEMT certification, and worked for multiple fire departments as an EMS provider.  But all of a sudden I find myself unable to become employed in the field I was put on this earth to be a part of because of the medications I have PRESCRIPTIONS for to help control the chronic pain I have from a rare disease.  I do not want to go on disability yet, I am just not ready to admit that is what my life has come to.  I am able to work, I want to work, but no one will hire me because I have prescriptions for and take on occasion opiate medications.  I have worked for several years in this field prior to this year with no issues, an exemplary record for care provided and letters of recommendation from employers due to my ethics, ability to function under stress, and provide excellent care to any patient in all situations.  However, now because of the war on opiates, pain medication and chronic pain have become an extremely taboo issue in the workplace.  

The FDA uses a lot of different adjectives to describe everything from A to Z when it comes to opiates.  What I find interesting are all the things that seem to be ignored such as:

This medicine may make you dizzy or drowsy. Do not drive or do anything that could be dangerous until you know how this medicine affects you. Sit or lie down if you feel dizzy. Stand up carefully.

So what employers and their legal teams seem to ignore is the part where it states these meds MAY have certain affects, as in they MAY also not affect you at all.  Or how you should not perform certain activities UNTIL YOU KNOW how it will affect you, as in you are good to go if you already know how it will affect you.  This is what applies to my case.  I do not process most medications the way the average person does and as a result it means the combination of medications I take for various things is a bit odd.  However I also know after years of being on these medications exactly how they will affect me, for how long, in what manner, and even how long they will affect me based on what I have eaten or drank recently.  The websites basically give all the worst case scenario information which is what companies and legal teams grab onto.  

I find it very hard to be told that I should find another field to work in, or to let it go and apply somewhere else and just don’t put down my medication list.  I want to get a job in the field I love and I want to do it honestly.  Why should I have to hide my medication list, or give up the thing I love the most after already doing it for years?  I understand that rules and regulations are put in place for a reason to protect the patients.  Personally I would never endanger a patient by taking something that affected me so severely it could cause them harm.  But when advising physicians are making recommendations based on one aspect of the medication it can be very hard to for those few who have no issues to make it through.  There is a “black box” warning on almost all medications state that they can impair you in some way, and for good reason.  But again that is there because a few people reacted that way and now it must be put on all prescriptions regardless of the person taking them.  I have met people who respond so poorly to caffeine they are unable to function on even the smallest doses present in things like chocolate.  Just an example of how something benign can have a profound affect on someone the same way it can have none. 

I will not give up, I work every day to find a way to do what I love.  I am always looking into new research and new methods of pain control that do not involve medication or at the very least opiate medication.  There are people out there every day showing that you can do what you love despite all the odds, you just have to believe and work hard enough.

Fight Song

Fight Song

Sometimes, in the late hours of the night, we feel alone.  When the pain of the day becomes to much and we can no longer distract ourselves from the depression of the situation we are in.  Our minds spin, swirl, leap, bound, wander and never stop.  We fall deeper into the abyss of depression because each of us is just one person and what can we do?  Some think they’re a burden to the ones they love, a failure because they can not achieve the basic goals they set before themselves.  The biggest fight we deal with every day has nothing to do with the chronic illness we suffer with.  It’s the fight to find the will and strength to make it through another night, another day, another hour, another minute.  It’s the fight to beat the battle we fight inside our own heads.  We who live with chronic illness are the best chameleons you will ever meet.  We can fit into any situation and my any person think we are just fine, even when we have lost a battle we make you think it’s fine and that we can win the next one.  But inside is a whole different story.  Much of the time the only person who see’s the real us is the person looking back in the mirror at us.  I hate showing the sad and upset side of myself to anyone, even the ones I love because they only look back at me with more pain because they suffer for me.  

Some days, it’s all I can do to get up and have a cup of coffee and watch the dogs run around the yard.  On those days I am disgusted with myself.  I know I shouldn’t be, but just because I shouldn’t feel something doesn’t mean I don’t.  I have to work each time to tell myself it’s okay.  It’s okay you didn’t get the job because of your illness, it’s okay your behind on the laundry because of the emotional hangover from the night before, it’s okay to just sit and watch the world go by because tomorrow is another chance to do more and be better.  I work every day not to let the day before win.  I fight every day to make it one step closer to being the person I really want to be inside and out.  And I will be the first to admit that I get really tired of fighting.  Tired of fighting for better health, for a job I love, for the life I want, just tired of fighting for everything.

On those days, in those hours when I feel like I just don’t have any fight left in me, I turn to music.  I put a few songs on repeat and just lose myself in them trying to embody every word and find some kind of strength.  If every battle I have fought was illustrated on my skin, there wouldn’t be an inch of me uncovered.  But that’s the truth of it isn’t it, no one can see the battles you have fought, the ones you won, or the ones you lost.  They see the “healthy” looking “happy” you standing in front of them.

This battle, this fight, this war, that each of us suffers through every day, may never end.  But as long as we keep getting up, and finding a reason why each day is worth living, we can win the fight, one year, one month, one day, one hour, even one minute at a time.  I read once you can stand anything for ten seconds, so when you sit in the darkest of places, pain coursing through every fiber of your being, remember you can do it for ten more seconds.  Then scream, or cry, or throw something, find a way to release the poison building in yourself because only you know how quickly it will build up again. 

So I sit outside, listening to the anthems I tell myself I have to follow, believe in, and follow.  I feel the sun on my back and hear the birds sing nearby.  It is a beautiful day outside, but its a ragging storm inside me.  I try hard to find a way to bring the peace and calm and beauty that surrounds me inside me.  I try to find a way not to let the enemy I am fight today win.  Because if I can win today, maybe I can win tomorrow too.

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/

 

The Good and Bad of Steroid Therapy

The Good and Bad of Steroid Therapy

The use of steroids such as predinisone is a slippery slope in the world of chronic illness.  Many who have been on predinsone for any period of time typically report a significant reduction in symptoms, an increase in energy, and an overall improvement in daily life.  However, when they are used continuously they can have some pretty negative long term effects on the body.   

For someone in the HPP community some of these side effects can only add to the problems caused by the disease.  Most pronounced and serious is the thinning of bones caused by long term corticosteroid use.   This side effect, though not typically common in occasional and or part time use, can be very problematic in a disease already causing bone thinning or softening.  But being able to utilize coritocsteroids in the right way and only when needed can bring about a very positive effect.  

Though I can not speak for others in the community I know personally that I tend to experience occasional flares of tendonitis in random joints, with no provocation, and with no warning.  When this happens I do my very best to get the issue under control with all the regular therapies.  I utilize resting, icing, muscle rubs, NSAIDS, water and cryotherapy.  If I am unable to resolve the issue myself within a few weeks, or make no progress in recovery there is one thing I usually turn to that I have found to work well, is easy to use, and non-harmful.  

Methylprednisolone in a one week dose pack is my go to for issues like this.  It is a derivative of the very popular prednisone but without the hassle of a bottle and tapering which usually has to happen.  It comes prepackaged with a set number of pills to take each day starting with the first day being the highest dose, then tapering down to almost nothing.  I can usually tell after the first two days of dosing that there is a significant decrease in pain and restriction of movement in whatever joint is most problematic.   Even after the first day I notice a reduction in pain which typically comes as a huge relief since dealing with daily pain is only compounded when you have tendonitis to further restrict your movements.  

I really like this type of medication because for me it not only works well on the area that is specifically bothering me, but tends to also help other areas of swelling, such as nerve inflammation or bad muscle spasms.  This allows me to take a minimal amount of medication and fix the maximum amount of problems all in one setting.  Plus it’s one less time I have to go for an injection.  Beyond those other factors I am also able to communicate with doctor using the Aurora portal to request the dose packs avoiding the excess doctor visit and energy wasted on going in.  Not all medical professionals may be comfortable prescribing this medication in this manner and may ask for you to come in for an appointment.  This is also fine and still well worth the visit.  I have also found that getting this prescription is much cheaper then going in and paying for an injection of cortisone in the afflicted joint, and honestly when you spend as much time, money, and energy on going to the doctor and taking care of yourself as I do, it’s worth the savings.  

So if you any further questions please contact your local doctor or pain management specialist and ask about Methylprednisolone the next time you have a flare. 

 

For more information on the side effect of Corticosteroid use please visit the following website:

http://www.mayoclinic.org/steroids/art-20045692

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.