Rare Disease Day

There are months for diabetes, cancer, days for puppies, coffee and heck today is National Pancake day! (Yes this is a thing and YES my parents will be at I-Hop for free pancakes).  Tomorrow is Rare Disease day.  Why is this more important than any of those other things – and yes dad even more important than pancake day??? Because 1 in 20 people will suffer from a rare disease.  These people will suffer while the medical community struggles to figure out what is wrong.

They will tell their patients it’s all in their heads, that they aren’t really sick, that if they worked out more, ate better, slept more, slept less they wouldn’t be sick.  HUH?  I mean don’t get me wrong eating better can help you feel better and sleeping (more or less) will make you feel better but it isn’t going to cure you.  Your illness isn’t going to magically go away – you may manage symptoms, you may even have remission from them, but the underlying disease will still be there!

What Nicole has, it isn’t rare, it’s rarely diagnosed!  Its often looked over because doctors don’t know what it is or they aren’t willing to find it.  They don’t want to look deeper than the surface, they maybe don’t have time or maybe they are insecure about not knowing.  You see doctors are taught that they know everything! They are the doctor!! Guess what they are human – Crazy I know!!  They make mistakes, they mess up, they don’t have all the answers even though we want them to!

Rare disease day means creating awareness of for things that doctors don’t know.  It means as parents and patients we must educate our doctors while understanding they are doctors and they do know more than we do (sometimes) that they went through ALOT of school and we should respect that.  I know many of us of had doctors blow us off, tell us we didn’t know what we were talking about.  Some people I know have had their kids medically kidnapped and for those medical professionals I have no words!

This isn’t about them, this is about the remaining 90% who truly are trying to understand but can’t.  Maybe because years of schooling have taught them that they have to know it all, or maybe it was their teachers.  However, it’s our job to help them learn different.  Help them know that our kids are different that they don’t know everything and maybe, just maybe we know more than they do.  In that moment that we are a team, we are on a journey together and that may mean fighting in the backseat, arguing about which turn to take and when we should stop for food, but we are on a journey together.

Rare disease day means teaching each other how to work together and how to raise awareness for everyone!

 

 

 

 

 

 

 

 

 

 

 

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That letter

We all dread that letter. The one that says we owe more than we thought or that we didn’t get into the college we wanted.  We recently got a letter, it seemed very innocent. So much so that I wasn’t going to open it. I figured it was junk, nothing to worry about.  Except it wasn’t junk and it was something to worry about.

You see our doctor, who is amazing, she’s beyond amazing, she’s on the same level as the best doctor God has ever made.  The one whose sister in law is my daughters social worker at school, the one who listened when everyone else didn’t. The one who started saying we are looking for a zebra in the horse barn and then went on to say we are not just looking for a zebra but ‘the’ zebra.  The one who agreed to let us go to Mayo even though she didn’t think we’d get answers, the one who signed the handicap placard and agrees that our child shouldn’t get vaccines or do gym.  Yea that one!

We got the letter that said she had left the practice she was part of. No why, no explanation, no where she went just that she had left.  The letter went on to say that we had been assigned to a new doctor.  Are you panicking Yet??? I am! I am in complete panic, I don’t have a doctor who understands whose been on this journey with us for 12 years, 12!

Now I have to find a new doctor who will understand, who gets what my kid has.  I have a name he’s supposed to be really good and will do weekly IV’s and is supposed to be really good (did I mention the really good part).  Except I can’t call him, I can’t, its on my list of things to do, but I just can’t.  I want to, I want to schedule an appointment and go see him, but what if?  What if he won’t fill our the handicap placard paperwork or sign the no gym paperwork.  What if he doesn’t understand that we have decided to not vaccinate and fill out the paperwork for school.  Then what?

I’ve talked about medical kidnapping before, and this is a very real fear for me.  This doctor has come very highly recommended from a friend. Her child is sicker than mine and she raves about him. However, he’s not our doctor.  He’s not the one we’ve gone to for strep throat and cut ears, and allergic reactions and FPIES and POTS and the mayo clinic.  He’s not the one, who started this journey with us so many years ago… and now I have to go to a new doctor who doesn’t know us, doesn’t know my kid and just doesn’t know…

Life sucks sometimes, and I realize that in the whole scheme of things this is kind of minor but in my scheme of things its not so minor and its not so little… it just kind of sucks!

 

Milestones

As parents we all look forward to those milestones.  From the first smile to sitting up and walking and first words.  We look forward to the first day of school and cry as we think about the last.  We lay awake at night worrying about driving while inside we are super thankful we have someone to run errands and pick up siblings!

When I think about milestones with my kids I worry as much as I celebrate them!  However, we hit a milestone yesterday that I am not sure I ever thought would be one.  My child ordering her own medications.  Yes, I set her up and taught her to do it, she needs to own this and its part of growing up.

This milestone is about teaching to her to manage on her own, its just not a milestone I thought we’d have to reach…..

Flying Lead Change

If you are scratching your head as to what that is, don’t worry I was as well!  When Nic got in the car last night she was as excited as I’ve ever seen her!  She had done a “Flying Lead Change” with Dixie (her horse).  She went on to explain that this ‘change’ gets the horse to hug the barrels tighter and she did the barrel pattern in 14.5 seconds.  For reference the girls at the rodeo do it in 13-14 and the girls we saw at the local rodeo do it in 30.  So this is REALLY good!  Of course she knocked a barrel over which adds a few seconds on as a penalty.

What I loved about last night, besides learning what a flying lead change was; was that I saw a light in my childs eyes that I have not seen in a VERY long time!  She was beyond excited that she literally bubbled!  We struggle every day with getting her up, and awake we avoid things like showers because they simply wear her out.  But this, this made her so so happy!

Horseback riding is something that I don’t think I could ever take away from her.  The connection she has with Dixie is beyond amazing and something that I cannot describe.  The barn owner has a disease similar to Nicoles.  So she understands that there are simply days where getting up is not possible.  Nic generally rides on Monday’s but we had to cancel because she wasn’t able to stay awake.  (For the record – she will ALWAYS push through and for her to agree to let me call her out – she must of been really really down)

So we got moved to Tuesday at 4. She usually rides with 2 other very experienced riders and she has to work to keep up.  Last night she was alone and her training was able to work with her directly to get this skill taught.  I told her that I would pay extra to allow her that 1×1 time anytime she wants!!  (The barn doesn’t charge extra for this btw)

Last night my child got to do something she loves more than life!  Something that puts a fire in her like I have never seen!

For those of you who don’t know who Dixie is (she’s not really ‘ours’ but she might as well be!)  Here’s a picture!  (And yes here she is riding bareback) .facebook_1518617469040

Big Brothers

I never had big brothers (or sisters) since I was the oldest child!  Nicole has 3 big brothers and she loves them all!  However her favorite is Steven (or Steve as his friends call him).  This big brother turns 22 today! (Yes I feel very very old) Steven as I will always call him came into the world with an opinion and work ethic that I don’t think I’ve seen in any of my kids!  He also does not like change!

This child who came into this world the size of most 3mth olds has continue to grow and capture my heart!  When he was little he would tell people we lived at the ‘Tel (Short for Hotel) as his dad was a Chef for Wyndham we moved ALOT!  Chicago, Atlanta, New Jersey and finally back to Chicago.  His life was not without struggles including 3 head injuries at an early age.  He also suffered from similar issues that his sister did, we just weren’t sure what it was at the time.

He also had an opinion and wasn’t afraid to do what he wanted even at an early age.  He walked before a year, but didn’t talk until he was almost 3 (he is still a pretty quiet person) but his work ethic always blew me away.  We’d punish him and tell him to clean the bathroom he do one and ask if he could do another.

Tell him no to something and he would get it himself (not always the best choice) He sees the good in everyone, loves to surprise his little sister and loves his girlfriend more than anything.  He was never a mama’s boy, he looked up to and idolized his dad (which I still believe is the most amazing thing ever)

He tortured his little brother but now double dates with him and they are taking their dad fishing in May for his Christmas present.  This child who is now over 6ft tall and so so big has grown to be an amazing person, man and friend. Always willing to go the extra mile, never afraid to tell you what he thinks, (even if he should maybe hold that back) and willing to love life!

I will never forget the days leading up to his arrival!  We had no idea what we were doing, as most young parents I suppose! I do remember going to the mall and buying cat food so we wouldn’t have to go out after he was born. I remember going to the hospital in the middle of the night because we were going to be induced in the morning and I remember sleeping through his first 6 hours on the planet!

The pride his dad and grandfather had for him was beyond words!  His grandfather passed away when he was 3 but wow that man loved that child!  I remember going to his baptism party at his Great Grandma’s house (yes she is still around in fact the kids have BOTH Great Grandmas around) And Roger carrying him around the entire time we were there.

I remember this little curly blonde haired blue eyed boy who cried when mom made him wear this very funny dinosaur costume on Halloween (yes I am mean) I remember a child who loves his Packers (still does) and wants to learn about how everything works!

We have not always had it easy!  Some of my choices have made our relationship rocky but the love I feel and have always felt will never change.

The fact that he even arrived is a miracle that I do not take for granted any day! I know God has amazing things planned for this not so little boy (man) and I know that he is making an impact on this world!!

Hidden Illness

I read today that one of our fellow POTSie moms lost her daughter to suicide.  She was a beautiful young lady who fought an invisible illness.  She had an illness that while not rare is rarely diagnosed.   We have to find a way to identify this illness and help kids who are dealing with it.

It is isolating, people don’t understand why you feel so tired that literally can’t get out of bed!  Friends abandon you, family thinks you are faking and doctors ignore symptoms as “all in your head”.  When I was pregnant with my oldest son Steven I was very very sick. I couldn’t eat and I vomited for 3 months straight (and no that is not an exaggeration) I had central lines (2) PICC lines and more IVs than I could count.  In fact I suffer the side effects of this some 22 years later.  I was put in the hospital and I was seen my psychiatry because of course this was ‘all in my head’.  The psychiatrist even said he couldn’t find anything wrong with me!!

This is what many POTS patients deal with.  The isolation for so many is very hard to handle. Kids are vulnerable to begin with, they struggle with being liked, wanted and accepted.  Add to that a chronic illness that doesn’t go away, that family and friends think you are ‘making up’ and some end up taking their own life.

I don’t write this because I worry about my own kids (Well I do worry but that’s another story) I write this because we as a society need to take notice.  We need to accept that there are things we can’t see, touch or understand.  This doesn’t make it wrong – we accept ghosts, God and aliens, but we when someone says they are too tired to get out of bed we think they are crazy.. (really??)

For today, reach out to the person who is alone, who doesn’t seem to have friends or might be dealing with something we just don’t understand and tell them we care.  We love them and while we don’t understand we know that they are dealing with something bigger than we are and know that it’s OK.  We don’t have to know what’s going on to care!

Mommy Guilt

I don’t think there are parents out there that don’t have some guilt.  Guilt that they spend too much time at work, guilt that they don’t feed their child the right kinds of food and guilt that they let them spend too much time on their screens.  Most of us have experienced some form of guilt in our life as parents.

When you have a child with a chronic illness the mommy guilt becomes multiplied by 1000000.  Imagine this, your child wants to hang out with a friend in the evening.  Sure!  Why not! I mean it gets them off the screen and you get a few hours free to do things like housework and cook dinner (I mean read and drink wine LOL) but seriously, whats the big deal? It’s a family you know and love and your child gets to hang with friends.

Now your child has a chronic illness, this means this time spent with a friend means they can’t go to school tomorrow.  Or maybe not for a few days? Do they still get to go?  How do you balance this?  As a mom, its ALOT of guilt – its alot of let them do A, then they can’t do B. Then you struggle with what do other people think – I know we’d all like to think we don’t care.. but we do.. we want people to see that we are doing the best that we can!

Mommy guilt with a child with a chronic illness is so much bigger!  The idea that a choice you make, means your child can’t do something else and if that something else is school it becomes so much more!  So here we are, struggling and letting our child get the exposure they need while still getting to school!!

 

OH the joys

This past week has been a s*** show to say the least!  It started on Sunday with Nic being totally and utterly down, like asleep for 24 hours!!!  Then Tuesday she woke up with a high fever 102.5 and to make it more fun a HR Of 180.  Apparently high heart rate and fevers go together… (who knew) so after being down for 4 days and NOT eating or drinking despite my best efforts we ended up in the ER on Friday night.  After convincing the doc she needed fluids (he actually knew what POTS was) and 4 needle sticks (And 3 blown veins later) we got a bag of fluids and drugs (we didn’t need)

Today she was back to school and is finally feeling somewhat normal. She’s even outside swinging.  What I learned in this entire thing is that I have an amazing online community of people who support, answer questions and simply are there when I need them.  They don’t judge or ask questions they simply provide answers and support.  When I asked about fevers and HRs they all jumped in and said YES these go together!  They talked about how high was too high and when should you go to the ER.  What I loved is that I never felt alone and I always felt supported!

If you have a child with a chronic illness find a support group, find a place where you can go and get the support you need because while it may not seem important now one day it will be! And you will be so thankful to have that group!

What is POTS?

Most of the time I write about our day to day struggles with having a chronic illness. I do this here because I try to avoid putting to much of my personal life on my facebook page.  However, after this weekend I felt that it might be important to share.  Nicole has POTS (I know big surprise right??!!) OK all sarcasm aside, POTS isn’t just an acronym for a disease that noone has ever heard of, it is our day to day reality.  Some days that reality is like everyone else’s however this weekend it became our nightmare.

This weekend we were scheduled to travel to Wisconsin Dells for our annual winter student conference.  Tony and I take Friday and Monday off and travel to the Kalahari resort where we work for 3 days straight to ensure 1350 students have the most amazing experience possible.  For a kid with a chronic illness this can either be really fun or really bad.

Before we go further let’s remind ourselves what POTS is: (From WebMD)

POTS is a fast heart rate (tachycardia) that starts after you stand up. This can suddenly happen as long as 10 minutes after you stand. With POTS, the body does not control blood pressure or heart rate as it should after you stand up. So for a brief time, you may not get enough blood to your brain. This can make you feel dizzy and lightheaded. You might faint. Sitting or lying down helps you feel better. For many people with POTS, fatigue and other symptoms may make it hard to keep up with daily living.

Read the last 2 lines again!  (OK now again) POTS doesn’t make Nic tired, it makes her unable to function. She’s not just tired, or lazy, she is incapable of getting out of bed. Sunday, when her friends were playing dodgeball, swimming and riding rides she was in bed. Not sleeping, but almost unconscious.  Her heart rate and blood pressure were very low, making even sitting up impossible.

I am not writing this to make you feel bad for her or for us, but to explain when we say this is bad, we mean BAD not she’s just a little tired.  Take your most tired moment and times it times 1000 and then add 1million and you might get close to what she feels.

Having POTS means that you can do 1 day but not 2, that you can do 1 thing but no more.  It means having to balance everything that you do, and even then it means missing out.  She didn’t get to attend any of the conference on day 2 because she went day 1.

I know what you are thinking, not fair! I agree!!  However, I don’t write this because I want you to feel bad for us, but simply to provide an understanding of what she deals with and to let you know that it’s OK to ask how she’s feeling.  We appreciate that, it’s also OK to admit that you don’t understand, that this disease doesn’t make sense (it doesn’t to us either) and that it’s hard to fathom a 13yo kid who will sleep for 23 hours in 1 day.

If you are curious, please ask questions, do research and get information!  If you know someone dealing with this crazy disease, let me know we love to expand our circles!!