Author: Annalise Delzer

Post Diagnosis First Job Interview

Post Diagnosis First Job Interview

It’s been a tough road post diagnosis with HPP.  I had to re-think all the plans I had made for my life starting with what in the hell I was going to do for work.  At 28yrs old and for the most part an active person most of my life, having to consider that I might not be able to handle a full time job, let alone get one in my field of education, was a hard pill to swallow.  I had to take the time and evaluate how much I could safely handle.  My field of choice and passion is EMS(emergency medical services), and there is nothing better to me then providing comfort and care to people in their darkest times.  I have worked as an AEMT for years.  Mostly on an on-call bases but hey it was something.  So never in a million years did I think I would get another chance to work in the field after diagnosis. 

RCecently I was offered a chance to work for my local EMS service.  I was over the moon excited and immediately started planning how I was going to do better, get in better shape, eat better, be better so I could foe fill my passion and help people.  Thankfully they offered the chance at part time, perfect for me, so I jumped at the chance, sent in my application, and within days was at the clinic for my pre-work screening.   

The pre-work screening is standard in any EMS position since you do have to be physically fit enough to carry the equipment and lift and work with patients.  I knew I would have no trouble there since I had been doing this stuff prior to diagnosis and treatment with Strensiq.  And of course there was the drug screen, which again I was prepared for knowing the medication I take would show up positive.  I had a doctors note saying they did not affect my mental faculties and I was able to function at a higher level when taking them given my chronic condition.  I had done this before with another EMT position and was met with no opposition.  The next part was a consultation with the doctor who would assess me to make sure my reflexes and medical history would not affect my ability to perform.  

So you can imagine my surprise when the doctor took one look at my medications, a standard question on the form, and started asking questions about what they were for and what I had.  Being that I had not shared with my potential employer my disease I was hesitant to discuss it, but I also know that lying could open me up to legal issues.  So I proceeded to give him the basics.  Shortly after my explanation of a disease this doctor knew nothing about he asked me, in a not so positive fashion, if I really thought this position was a good fit for me given my chronic condition.  I must admit that the moment following that question seemed to last longer than it did because never has anyone questioned my physical capabilities.  I was after all a life long athlete and strong despite my disease.  I’m not even sure how I stumble through my reply of something along the lines of “I was doing this prior to diagnosis and treatment so yes it’s the best fit for me plus it’s part time”.  I think the doctor was a little taken aback by my reply as well because he continued to press the issue with comments about my ability to recover compared to others.  Just to top it off he asked what I would do if my partner failed while we were trying to lift a 250lb patient into the ambulance.  Again my mental faculties stuttered since I’m pretty sure anyone on the job would struggle with that much dead weight on their own.  But I replied that since I had this condition I probably was better equipped to deal with this type of situation since I have already trained myself how to lift, move, fall, and catch myself in emergency situations.  He simply replied he was not here to judge that only to make sure I was making the correct decision and determine if my reflexes and muscle tone were good, which of course they were perfect. 

The rest of the screening was a breeze, not to say I completed it without pain, but no more than anyone else and I felt good, like I had proved I could still do this job I love.  But something started to eat at the back of mind, what the doctor had asked and how he talked to me.  Given that this had never happened before, and that it had taken a year for this job to come along, I wanted to be prepared for any outcome.  So I turned to my support group for of course support and advice. 

You can again imagine my shock when the comments starting coming in and they were not positive.  I was told to grow a thick skin because I might have to go through denial a dozen times before a company was willing to take the risk of hiring me.   I was told I was selfish for being upset about not getting the job (even though I hadn’t even heard from them yet), because other families had suffered more then me, lost children to the disease, and been told they had limitations their whole life.  I was told I complain to much and that I hide behind my #nolimits.  It took a dozen posts before someone stood up for me and anyone offered solid advise.  

Not only was I now worried about getting a job that I had previously thought would be no problem getting, but I was upset at the outpouring of negative and judgmental commentary coming from the one group of people I could turn to who would understand where I was coming from.  This is ridiculous I thought, what ever happened to good advice, sympathy, empathy, support and positivity.  Had I not suffered enough to deserve that from this group of people?  I started questioning myself, and I felt like I didn’t deserve this dream job, and my suffering was no longer valid, that my pain didn’t count, that my voice was only annoying rather than helpful.  Of course I cried, and round and round I went in my own head, trying to think my way out of the pit of despair I just been thrown into.  

I decided in the end that if I had to suffer more and go off my medications in order to do the thing I loved most, I would.  The physical pain I would potentially endure would be nothing to the prison I would otherwise live in inside my mind.  The depression of being told you can’t, you won’t, or you shouldn’t, to me is more debilitating then any physical pain I have been through.  So I would find a way, take the chances, make the changes.  I would endure.  But I also decided that for the first time social media, i.e facebook, was not a healthy place to get what I needed support wise.  It was because of social media that I had my meltdown and questioned myself so deeply, something I had not done since deciding I would not let this illness rule my life or limit what I was capable of doing.  This incident had gone on to blow out of proportion and not only affect me, but my relationship with my husband and my ties to the only community that could share in my struggles.

Long story short, after tears, depression, sleeplessness, questioning, doubting, and more, I decided to leave facebook.  I gathered my thoughts, renewed my inner strength with the help of some supporters, vowed to make changes in the way I deal with my personal relationships, and set my mind back in the right place which was that they had no reason not to hire me and to remain optimistic. 

People with HPP are doing amazing things they have been told they can not do every day.  Each person that accomplishes something brings hope to others for a life where limits do not apply.

Dad’s Point of View – Ch. 1, Fear and Pride – May 10, 2017

Dad’s Point of View – Ch. 1, Fear and Pride – May 10, 2017

This is the first in a short series of article written by my dad, the parent of child with HPP diagnosed after living what we all thought would turn out to be a perfectly normal life.

We always knew something was wrong.  We thought it was depression, or ADD, or maybe she just wasn’t naturally academic.  Annalise was just too fatigued to complete her studying, and the level of fatigue varied with stress.  She had occasional injuries, but what do you expect from a no-holds-barred soccer and volleyball player?

I can imagine nothing harder than for a father to raise an active daughter who wants to reach for the stars on everything, but sometimes cannot make her body do it.

Nor can I imagine anything more rewarding than to watch one’s daughter cross the stage to get her college diploma, or win the Badger State Games in shot put, or build an accurate six-foot-tall human heart, or become known as the best I-V needle stick in the business, or hold your arm as you give her away to the next man in her life.

Annalise works occasionally for a very wonderful rheumatologist (remember that “best I-V needle stick”?) whose brother is a pain management doctor.  That doctor just happened to have been talking to an endocrinologist who happened to have heard about hypophosphatasia.

A referral was arranged, and Annalise had her blood test to compare to two previous tests.  They found an ongoing pattern of low levels of alkaline phosphatase.  A diagnosis of hypophosphatasia (HPP) was recorded.  Annalise was – very briefly – overjoyed, and I was nearly as happy for her.  Finally, there was a name for the enemy robbing her strength and energy.  Finally, there was proof that she was not a hypochondriac or a malingerer. 

Her mother, a superb RN who had fought the medical profession (and anyone else who didn’t believe Annalise) brought us back down to earth as she studied all she could learn about HPP, and we began to realize the enormity of the task facing Annalise in fighting this enemy.  Nonetheless, fight it she has.  Read her blog entries to learn more about that fight.  And I will add more articles to tell you about the effect her HPP has had on me.          

                                    

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!

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.