A letter to my mother

A letter I would love to give to my mother, but know I never will.....

Mom,

I love you. You mean so much to me, because you gave me life. Please remember this as you read through this letter.

I know I'm not your first born, and I'm not the baby, but why? Why do I feel like I'm nothing in your life? I wait for you to call, and sometimes, it's months and months before you even realize it and call me. I talk to Michelle and Rachel and they tell me that they talk to you all of the time, but you never call me. And when I call you, the first thing out of your mouth is,"what do you want?" Do you realize how much this hurts me? It's like I am a burden to you. You don't realize how much your words hurt me.

You once told my husband that I'm a hypochondriac.

Really?

Why?

Because I actually am sick?

Because as a child every time I would beg you to take me to the doctor, there was actually something so wrong with me that I usually ended up in the hospital or having surgery?

That's not a hypochondriac, mom - that's someone who is sick. But let me just say thanks for putting that stigma on me. Now everytime I feel bad, he throws in my face that even you think I'm faking it. I know I'm not beautiful like Michelle and perfect like your precious Rachel, but I am human. I can't help it that I look like my father. I truly believe that there are times when you hate me because I am a visual reminder of him. At least you finally admitted that to me - not that I was shocked, because I've felt it my whole life. And just so you know - your sister told me a long time ago that I looked just like him and that you hated it.

I've tried my whole life to make you proud, and for the first time in my life, you said it when I graduated college earlier this year. Why must I overcome huge obstacles for years before you even say you are proud of me? Am I that much of a disappointment to you?

About twelve years ago, I went to your work to drop something off for you. When I got there, I asked the woman at the front desk for you and she advised you weren't back from your bus run. She asked me if I was Michelle and I said, "no, I'm her other daughter." "Rachel?" "No.....her OTHER daughter, Donna." "Oh! I never knew she had three daughters! She only talks about Rachel and Michelle".

Wow........

That is how I have always felt.....the daughter that you don't want to acknowledge. Your shame.

Even though you make me feel this way, I still love you. I still want you to love me.

Maybe I'm just a glutten for punishment..........

And before you say it, I know....you think I'm being overly dramatic. I know. I've heard it all my life. Thanks for that too.....

Maybe I am being dramatic. But since I wonder sometimes if you even love me, does that make me dramatic? Maybe I feel that way because I'm not feeling love from you.

I'm not writing this to be mean or to make you feel bad. I just want you to realize that even though you made me feel this way, I still love you. I am still your daughter, and I will be there for you and fight for you with my last dying breath. You are my mom, and you are the world to me, even though I'm not to you.

I love you.

Life is crazy

The last few weeks have been mind-blowing crazy. If it's not me, it's my son.

My son has cyclical vomiting which requires daily meds. If he doesn't take them, he gets violently ill and starts throwing up and can't stop until the cycle ends (this usually being when he has thrown up every ounce of fluid in his digestive system - including bile) and then he has to be hospitalized for the dehydration. We've had his disease under control for over two years, but this past September, he got sick with a bad virus. He was out of school for two weeks because of it and ever since then, his medication he's been on for five years for the cyclical vomiting is no longer working.

This school year, he's missed 40+ days of school and it's not even halfway over. I want so desperately to fix him, but I know I can't. He asked me the other day, "Mom, why can't we just be normal like everyone else?" How do you answer that?

So now begins the journey of trying to find new medication that works and enrolling him in home bound studies through his school. If he wasn't a senior, I would just pull him out of school and start home schooling him again.

We can do this - and we will overcome this hurdle.......

Please??!!

Good times

So since the doctor told me that he wants to meet with me again once he has my test results, I spent the weekend with my husband at the park he works at. I forgot about my worries, slept in a tent in the fresh air, dressed up as a woman from the early 1800's and had an amazing time.

Putting your worries out of your mind - even if only for a few hours - can sometimes make a world of difference.

By the end of the day Saturday, my entire body ached and I was ready to crawl into bed and stay there until Monday morning. I just knew I would regret pushing myself. Sunday morning comes and I got out of bed and had one of the most productive days I've had in a while. Just letting my worries go for one day (but still be cautious of my health) and just enjoying life, I feel a little sense of hope and can almost see the light.....it may still just be a slight glow, but I can see it nonetheless.

"Today is a new day, so don't worry about yesterdays problems, because today you just might find your solution, live for today and pray for a better tomorrow."

author unknown

Life in Limbo

Diagnosed, but not confirmed....do I or don't I???

Sitting and waiting for the call of my results from this round of tests. I may have IA, I may have something else. Which is it? Because wouldn't that affect what medication I take? Wouldn't that affect my future? Why is this so hard to diagnose with absolute certainty? Why is it that the only for sure diagnosis is, "well, all your tests are positive, so yeah, you have IA"?? I can't wait for there to be a better way to help people that suffer from mast cell disorders.

My current doctor (number 4) says he wants to test me for pulmonary disorders........uh........ok?

And why are labs so freaking slow???? 3 to 5 days???? Really??? How come someone isn't in the back running the tests as the blood is drawn? SMH!!!!

The title of my blog.....

I'm sure people are wondering why I chose this title. I do not claim to be a beacon to others, but I hope to find mine. Searching for answers is tiring, and it seems like an uphill battle. Will this help or hurt me? What happens if....? Why do I feel this way? How come??

If I am able to be the beacon for someone else, then great! This blog is not only to help others going through what I've been through (and still going through) but also a place that I can go back too and see the progress or set-backs I've made and faced....

Testing, testing 1...2...3 (part 2)

Yes, I can ramble. And I find myself chasing rabbits....so here's the rest of the story.

The allergist I chose was one that happened to be on my insurance and close to my work. After discussing my history with anaphylaxis, he told me some interesting things...

I have had a history of medical issues that have caused me to undergo surgery 15 times, starting at 6 weeks old. According to him, the episodes could simply be that my body is burnt out on medication of all sorts. Surgery is very traumatic to you body, and since I had an extensive history of being cut open, that could be the issue...only the tests would be able to tell.

He also informed me that he believed that I had IA (Idiopathic Anaphylaxis) and that if he was right, allergy test would show that I am not allergic to anything, which is why it's called idiopathic.....no known cause.

So I scheduled the test. 150 allergy tests, all at once. Just get it over with was my thought.....uh....bad decision! It took just under four hours for them to prick/scratch me with the allergens. Wait half an hour and no reactions except to cats. Which I already knew. Not wanting to accept his initial diagnosis, I thought he just wasn't testing for the right things. Round 2 - another 150 tests. Again, no reactions. Round 3 - blood tests to check my baseline triptase level. I call a few days later for the results, and the lab messed up the sample. Needed to go back for round 4. Waited another couple of days, and call to find out that they (yet again) had messed up the test.

So I schedule an appointment with the allergist to see how he wants to handle it. He instructs me to start taking Zyrtec every day and that when I have my next episode, they can obtain the triptase level then and possibly get a baseline a few days after the reaction. He hands me some pamphlets on Idiopathic Anaphylaxis and tells me that he is positive that this is what I have. He was very sweet because he gave me a few minutes to read what he had given me, came in and did everything he could to calm me down. I know I looked like a deer in the headlights. I told him flat out that I didn't like his diagnosis and that I wouldn't accept it. He was very understanding and told me to go and get a second opinion, and that I would discover that I am not allergic to anything and that his diagnosis is correct.

So I did just that.

Now keep in mind, during all of this, I am continuing to have episodes of anaphylactic shock that happen to coincide with taking medication. Antibiotics, over the counter meds (one of which being Claritin) and unable to figure out what is causing it.

So allergist #2 - There's no such thing as Idiopathic Anaphylaxis. We just haven't found what's triggering the episodes. Let's do more tests.

The more tests included an additional 400 allergy tests, a blind test with the Claritin to see if I reacted and scoping my throat to watch the swelling during the blond test. Of course, I didn't have a reaction. His prognosis: I'm having seizures in my throat. Don't take the epi because I just need to let my throat close, when I pass out from lack of oxygen, my throat will relax, and problem solved.

EXCUSE ME??????!!!!!!!!!!! I DON'T THINK SO!!!!!!

So I gave up. Just live with it and hope for the best. Well, truthfully, I thought all doctors were idiots and what happened was a freak thing that would never happen again.

Then three weeks ago, the signs started again. Throat turning red, tightness in my chest, and feeling my throat swell, but not quite closing.

So my journey picks back up here....I found an Immunologist who has dealt with this disease before and I see him for the first time on Friday. Kind of curious what will happen next.......

Testing, testing, 1...2...3

Oh the tests that are done to someone who suffers from a mast cell disorder....there's blood tests, allergy tests, more blood tests, urine tests, neurological tests, scans, biopsies....and the list can go on. Since I am just starting my journey with Idiopathic Anaphylaxis, I'll take you to where I've been.

My first round of tests were simple...or so I thought. I went to an allergist to try and narrow the things I was allergic too, since I had four episodes of anaphylaxis, which all happened to coincide with taking a medication. I went to my very first allergist, and explained what I had been going through the previous month....yes, four episodes of anaphylaxis in a month. The first reaction was understandable. I had been stung by a bee. You see, I have dealt with these little devils in my childhood and almost lost!

I was driving down the road, window down, enjoying the beautiful weather. As I was stopped at a red light, I felt (what I thought) my hair tickling my chin from the slight breeze coming into the window. I went to brush my hair away, only to feel a stinging pain. I let out a scream, looked down to see the dead bee I had just killed that was on my chin. I went ahead and went to work. My thought was, "Sure, I've had reactions as a child....surely I've outgrown it!" Just an FYI....you don't outgrow severe allergic reactions!! By the time I get to work (2 miles away), my chin has doubled in size and feels like it's on fire. So, I tell my boss what's going on, and drive myself to the doctor. When I arrive, I can feel my throat closing, and inform them that I am allergic to bees and had just been stung. Epi time!! WOO HOO!!!.......NOT!!!

A few days later the bee sting I got became infected, and being in fear that I was going into anaphylactic shock again (my face was swelling and turning red, and so was my throat) so my best friend rushed me to the emergency room. Infection had set in. Easy fix....get on antibiotics! WRONG!!! The next day, I went into anaphylactic shock....again. I know this, because when my face and throat started swelling, I drove myself to my doctor's office - 45 minutes away! As I walked through the door of his office, I collapsed.

So, I just happened to be allergic to the medicine...it can happen.

So my wonderful doctor nursed me back from my collapse, yelled at me for driving myself to his office when I was going into anaphylactic shock and then told me to start some new antibiotics in a few days (my body needed time to recover from the anaphylaxis). So a few days later, I began my new medicine. Day one....no problems. Day two.....is this medicine supposed to make me turn red? Why is my voice sounding funny?? Uh-oh!

After dosing myself with my Epipen, my boss took me to my doctor. Yep.....anaphylactic shock....AGAIN!!

This was the very first time I saw that my boss actually was human! He stayed with me while the doctor stabilized me, and then stopped at the pharmacy to make sure I had something to eat and drink when I woke up, and then took me home.

When my husband came back from being out of town, I had to tell him my tale of excitement....he wasn't that excited about my adventures. I didn't call him to come to my aid, because I didn't realize just how serious my condition really was. Lesson learned.....always call that special someone....it's better for them to miss out on whatever they are doing, then having to explain why you didn't need them in your time of need....

A few weeks later, I began feeling like I was getting a cold or the flu, so off to the doctor again. After examining me, he informs me that I have tonsillitis, bronchitis and sinusitis....all the itises! He looks through my chart and decides on the medicine to prescribe me. An oldie, but a goodie. Something I've taken in the past, and never had an issue with. Zithromax. Day one, I feel fine. Day two, starting to feel a lot better. Day three, my throat begins to swell....*sigh* Not again!!!

That is when he tells me that I need to see an allergist to determine what I'm allergic too since I'm having all of these reactions to medications.

So begins my journey....tag along for the ride! It should prove to be interesting!

All alone and no where to turn

Ever have those days where you just feel all alone with no where to turn?

Well, I'm having that now. I feel like no one takes me or this stupid illness seriously. I'm so angry but I can't put it into words that anyone can understand. The people I love have no idea how scared I am out how to help me. My best friend avoids me...our at least that's what it feels like. My husband refuses to talk about this stupid disease, because if we don't talk about it, it doesn't exist.

No one understands how alone and afraid I am. Yes, I belong to a forum of people that share this disease, but they aren't here so I can cry on their shoulder. They offer advice and try to lift me up, but they don't know me. They just know of my struggles with this retarded illness that no one understands how it works.

Sometimes I think people think I'm making the whole thing up. Sometimes I think people don't care if it takes my life. Sometimes I think they wouldn't even notice if I was suddenly gone.

I don't want to feel this way. I want to live my life without any cares. But that's not what God has in store for me. I know He is working through me and that one day, I will help someone else who struggles with the same problem I have. I know this because He's done it before. That's how I met and became friends with Lisa. She became my best friend and we've shared so much. I know she wants to be there for me, but she has her own family, her own problems, and her own struggles that I can't understand.

I may not ever be cured. I may die from this disease. But I'll be damned if I'm going to let it break my spirit.

This too shall pass. Just keep saying, this too shall pass.

Here I Am....

I want to introduce myself and eventually, I will share my story. My name is Donna and I suffer from Idiopathic Anaphylaxis. At least that's my unofficial diagnosis. I'm hoping to change that soon.

The purpose of this blog, is so I can vent, document and maybe help someone else with my struggles. Living with a Mast Cell Disorder is hard. Especially since there are some doctors who won't acknowledge it at all! Yes, I've seen some of them...and the damage it does when they make you doubt....horrifying.

So since this is my very first post, I found something that I will be presenting to all of my doctors, prior to treatment. It is exactly how I feel and what they need to understand:

Dear Doctors,

A young patient presents at your ER/clinic/rooms, with unexplained symptoms of chest pain and fainting.

What is you first response?

I'd hope that you'd investigate.

I'd hope that you would take it seriously.

I'd hope that you'd reassure your patient that you believe them, and will do your best to help them.

But sadly, this response seems to be the exception, and not the rule.

"You're just anxious."

"You're just depressed."

"You're too young for [insert illness of choice]."

"You just need to get out more."

"You're wasting our time."

This is what far too many patients encounter.

Do you know that your response in that moment can influence that patient's relationship with the medical system for years to come?

Do you know that your response can make or break that person's sense of self?

Do you know we come to you because we are scared?

Do you know we come to you because we trust that you can help us?

Do you know that you can crush that trust with an uncaring word or flippant attitude?

Do you know that rare, doesn't mean non-existent?

Do you know the tears we cry and anger we feel when we are casually and sometimes callously dismissed because you could not find the problem after some basic bloods and a quick check of our vitals?

Do you know how we second guess ourselves and avoid seeking medical care in the years to come because maybe you are right, and it is in our heads?

Do you know we now no longer trust the medical system because you, the expert, you who we imbue with hope and power, told us we were crazy or wasting their time?

Do you know many will fail to get the treatment they need because you made them feel like a hypochondriac?

Do you know many will lose jobs, relationships, lives, because they will no longer seek care for their symptoms for fear of dismissal or ridicule?

Do you know that even when we find a doctor who can put the pieces together, we are hampered by that one exchange we had with you?

Do you know that we mistrust the compassion and understanding we receive from that doctor because our trust was dashed by your indifference and disregard?

Do you know that we will spend years trying to overcome the damage you created in that one exchange?

Do you realise the power you have?

We come to you scared.

We come to you with trust.

We come to you with hope.

We want to believe.

We want to feel better.

You may not understand our condition.

You may be frustrated by a lack of clear results.

You may be overworked and tired.

But do not forget your power.

Do not forget that you promised to first do no harm.

Do not forget you are dealing with a person, not a bed number.

Do not forget that in that moment we are vulnerable.

A kind word.

Genuine concern.

A simple admission that you don't know.

Will build trust.

Will build hope.

See us as people.

See that there are real world, long-term consequences to how you interact with those who seek your care.

You have the power to make or break a person's entire experience with the medical system.

Remember that before you speak with your next patient and use your power well.

 

Donna

 

Taken from: http://bobisdysautonomia.blogspot.be/2013/04/dear-doctors.html