Best Husband Ever

So for anyone who didn't know my husband is currently attending Basic Combat Training at Fort Leonard Wood in Missouri. My only form of communication with him are the letters we send each other. He gets rare calls home as well. I've also been very sick recently. It would seem my medication has simply not been keeping up with the season. This means that in the past few weeks I've epipened and been in the ER twice. Add in the general sadness of missing my spouse and you can see how it would be a rough time.

Well yesterday after a particularly rough day something wonderful arrived on my doorstep. I got an order of purple, red, and yellow tulips in a bright pink vase from pro flowers. I was completely stumped to see them. I had definitely not ordered flowers for myself. I couldn't think of anyone else who could have sent them to me. I naturally discounted my husband since he's at training.

Turns out I shouldn't dismiss my hubby so easily. He had somehow ordered the flowers. When I opened the card it was from him. It was a very sweet message that I don't mind sharing:

      I hope these flowers brighten your day and that you will think of me each time you see them. Visions of         you in my mind are what get me through all of the testing I'm going through. I love you more than you  
      know!!
     All my love
     Alex

So I basically have the most thoughtful husband on the planet! This guy is going through combat training and somehow manages to order flowers for me. They were especially thoughtful with how sick I've been. Some day I'll make him tell me how he pulled it off but for now I'll just enjoy the mystery.

p.s. I am NOT allergic to tulips in case anyone was concerned.

Medical Lost Cause

 Hey everyone I'm very sorry I haven't written much lately. I had a bad flare up with the tendinitis in my left wrist. It's similar to carpel tunnel syndrome but it's the tendon that controls the twisting motion. Anyway I"m been having to rest it as much as possible to avoid needing a cast. It seems to be improving. Another important thing all of you should know is that I will be starting a blog for Alex. This way we can keep all of you updated on how he is doing during his training.

Now on to the topic I planned for this post. So two weeks ago I started coughing. The coughing continued to get worse. I've been to the ER twice for it. I get coughing and can't catch my breath. I end up gasping, wheezing heavily and coughing blood. Well after the first ER visit I finally went to see my primary care doctor. He prescribed two long term medicines that do next to nothing for the immediate problem. Also one of the medicines has a steroid in it that I've had a bad reaction to in the past. This is the second time my primary care doctor who has had me admitted to the hospital because of a steroid reaction prescribed a steroid.

Then on Monday for the second time my cough got completely out of control. I called my doctor's office and their only suggestion was to go to the ER. I did everything I could to avoid the ER but I was having such a hard time breathing. The ER did their best to stabilize me. My oxygen saturation dropped to 90 % at its lowest and stayed at about 95%. When it dipped to 90% was when I got really scared because that's the line for respiratory failure. It took a long time to figure out how they could help me. Thanks to my medicine allergies it's very hard to treat me. There is really only so much an ER can even do for me to help me breathe. The ER doctor had absolutely no idea what was causing the cough. Her diagnosis was this: persistent cough. The ER doctor had no recommendations for once I was stabilized and headed home. They had done all they could and there was nothing more that I could do on my end either.

So yesterday I called my doctor's office back because the ER said to check back in with them. My primary care doctor's office let me know there was nothing my primary care doctor felt comfortable giving me or doing for me himself. He had no treatment plan for me at all. The only thing they could do was to send me to a pulmonologist. The lung doctor's job was to find out the source of the cough.

I saw the pulmonologist this morning. He was a very nice doctor. After reading my chart, speaking with me for a few minutes, and examining me he gave me his conclusion. He concluded there was nothing he could do for me. He was very apologetic about the whole thing. He felt bad having to tell me that. He said I needed the Mayo Clinic or the Cleveland Clinic to help me.

While he was the nicest anyone has been when delivering that same news it still sucked. I've had 5 doctors in the last year label me a lost cause. I'm allergic to almost all of the medications used to treat the symptoms I have. No doctor has ever figured out the root cause of everything. I've already tried the Mayo Clinic before and it was a complete failure. I'm down to three options now. The first is to try the Cleveland Clinic hoping and praying they can help me. The second option is to try every homeopathic remedy I can. The last option is hardly an option at all. It is simply the only thing left if the other two don't pan out. The third option is to suffer through the cough and hope it goes away on its own.

I can't express how hard all of this has been. This morning was one of the few times I have started crying in a doctor's office. When the doctor tells you not only can he not treat you but that he is unsure anyone can treat you it's such a blow. You never know how much hope you had resting on a doctor until they squash it. It would appear that I am a medical lost cause.

A Breaking Update

This post is a combination of everything that has happened recently. Please allow me to interrupt your regularly scheduled lives for this breaking update.

First and foremost my husband enlisted into the Army active duty. He will be leaving for Basic Training on April 14th and after Basic he will go to Advanced Individual Training. I'm planning a post specifically about this topic so that's the overview for now.

On the medical front there have been a few updates. First I'm no longer seeing the same rheumatogist. To put it politely he gave up on treating me. Secondly my medicine has been changed yet again recently. That's been a moving target for a while. Third we're dealing with a new problem. I recently started having nosebleeds. Naturally they haven't acted like regular nosebleeds. I had two just yesterday. One was 41 minutes long and the second one was 25 minutes long. I stupidly decided I should probably see my primary doctor for it since the second nosebleed was the 5th in just a few weeks.

 In a stunning move of sheer stupidity my doctor wrote it off and prescribed a nasal spray. The catch to that is he prescribed something with steroids. I happen to be allergic to steroids. No not mildly allergic or moderately allergic, I'm deathly allergic. He's even admitted me into the hospital for an allergic reaction to a steroid. What's worse is it wasn't just that it was any old steroid it's one I know I'm allergic to. It gets better, it's the exact nasal spray that I've already had an allergic reaction to that required an epipen. Thankfully my pharmacist caught the glaring error in the prescription. I want to take this moment to express my gratitude to my pharmacists and nurses they really do stop doctors from killing you.

In other news I'm almost done with the BYU Independent Study class I've been taking. Both of my married sister in laws are pregnant. My adorable niece is my weekly morale boost. She cheers me up so much. She is absolutely a little bundle of joy. Also my sister in law Heather was accepted to BYU Provo for the fall term. She's nearing graduation and I will sorely miss her.

 So that's my update for now. Please return to your regularly scheduled life.

Strange Victories

As I have mentined many times in this blog my normal is not normal. Often I get the special privledge of celebrating odd victories. While some of the victories on this list may seem insignificant to you remember my mountain may just be your molehill. So here's a list of ten victories from today. Let's celebrate them together.

 1. I got dressed today without help.
 2. My husband caught an allergic reaction on video.
 3. I finished schoolwork.
 4. I only took a short 1 hour nap mostly because of medicine.
 5. I did household chores without help.
 6. I didn't trip on any stairs today.
 7. I made it up the stairs several times today despite the pain.
 8. I only needed 1 epipen today.
 9. I got to skip the ER.
 10. I had an outting with my parents that didn't end in the hospital.

Gallows' Humor

So this has been a fairly rough week for me and my family. To catch you up: Alex and I are in the process of moving, his grandmother is moving, my Mom is retiring (YAY!), we hit a new road block with MEPS (medical processing required for enlistment into the military), he was sick this week, I had dental work that went very very wrong, a second ER trip, and Christmas is next week. It's been busy on the home front to put it mildly.

In the midst of it all though we've been able to have a few pretty good laughs. Some of those laughs have been in the process of getting to, being in, or leaving the ER but they still made me laugh. My family's motto is you will either laugh or cry and we choose to laugh maniacally.  I'd like to share a few of the things that have tickled my funny bone this week. Most are paraphrased to some extent. Also you may not find all or even any of them funny but I did. So here's to a little gallows' humor.

1. Faith (to me): Heather keeps mutilating our Pepparkakor men!
    Heather: Well you try picking them up it's harder than it looks!
    Me: Why don' t you use a spatula to pick them up?
    Heather: Because.

    Five minutes later

  Faith: Heather you mutilated my stocking!
  Heather: Sorry they're hard to pick up ok.
  Mom: Why don't you use a spatula then?...
 

2. (while listening to Geeks get the girl by American Hi-Fi)
     Me: This song is strangely catchy.
     Alex: Yeah I liked it a lot as teenager.
     Me: Well it could be your theme song...

3. Me: But we did an allergy test! It should have been safe.
    Someone ( I forgot who): That should have been our first clue it wasn't...

4. Dentist: Ok we're going to have you on a blood pressure machine. ( looks at me very nervously) We might put me on one too.

5. From my allergy bracelet in the ER: See list but definitely NOT prednisone.

6. Me: So how bad was my cough?
    Alex: You sounded like a donkey trying to shout and bray at the same time.
    Me: I'm so glad I can't hear myself.

7. Alex: She just said thank you, I'm sure if she was feeling better it'd be something much more snarky.
    Nurse: That's fine, I love snarky.

8. Doctor: You know it's impossible to be allergic to steroids, especially IV form. Right?
    Alex: So we've been told. My wife believes in the impossible I guess.

9. Friend: Well you married him you must have wanted to, right? He didn't cast a spell on you.
     Me: No he didn't but I have been asked what I was drinking when I said yes... by his friends...repeatedly.

10. Heather: I'm sick of myself. Can I be someone else for a day?
      Me: Sure, as long as your last name is Fitzherbert.
      Heather: I can be Eugenia Fitzherbert!!
      Me: That is officially your new nickname.

One extra as a bonus

11. Me: Hey Eugenia come here.
      Faith: Eugenia?
      Heather: (laughing) Yep, Eugenia.
      Faith: You two are soo weird.
      Me: We know. 

Hope you enjoyed the laughs!

I'm not an idiot or a dartboard

So I went back to the allergist's office yesterday. To put it mildly it didn't go well. We went round and round. I got fed up and walked out of the appointment. I have no plans to go back to that clinic. I heard for the millionth time that perfume can't cause anaphylaxis it can only "irritate the lungs". Riiiiiiight. Everytime I hear that I want to scream. I asked what in the world the difference is because I can guarantee you that to the person in the ER or ICU there's not one. I don't care what you call it but I promise perfume can drop me like a stone.

I also got the typical lecture about how often I use my epipen. Its like doctors think that somehow this all escaped me. No I was clearly unaware that using an epipen could seriously impact my heart. It's only my heart that is racing and going berserk. Yep I completely missed that the last time I was hooked to a crash cart after epinephrine was administered. The doctor also did the epinephrine is a serious medicine and should only be used in emergencies lecture. So apparently I also completely missed the signs of when I should use an epipen. I was under the impression I should use it when I'm doing badly enough we need to call 911 or to you know maybe take the medicine early enough so I don't have to call 911. Maybe I was wrong. Maybe next time I should just wait till I stop breathing completely and someone else has to administer it. Yeah that sounds like a fantastic idea. Or I guess I'm just unaware of what anaphylaxis is. I don't know what else to call it when your throat swells closed, you have an audible stridor, severe respiratory distress to the point of turning blue, itchiness in the mouth, blood pressure that drops like a stone, heart rate that goes bananas, turn bright red and burning hot before turning whiter than a sheet from not breathing, tingling in the mouth, tingling in the hands, dizziness, and that wonderful sense of impending doom i.e. utter panic. Last time I checked that was called anaphylaxis. But hey according to the guy with the degree I'm wrong so clearly he's right. Riiiiiiiiiiiight.

I've come to the conclusion that doctors use people like dartboards. (I said doctors not nurses for a reason. If health care was run by EMTs and nurses things would probably go much better.) They throw medicines and treatments at you until something sort of kind of sticks. Well if nothing sticks then clearly you're beyond their help or better yet you're to blame. The greatest irony of the whole situation is that I typically wait till the last minute to use an epipen. I have been flat out fussed at by the EMTs that have shown up at the house because I waited so long. When I have to deal with idiot doctors I want to make them go work a few days in the ER to remember that medicine doesn't always fit into your nice perfect little box. Instead of giving up on the patient or punting them to someone else maybe you, the doctor, are the problem.

I've met a lot of people that wonder why I have such a bad attitude about doctors. Days like yesterday are exactly why I'm such a sour puss. It doesn't make anyone happy to be dumped by one doctor and punted by another. It's frustrating beyond all reason to be lectured again and again. It's infuriating to be poked and prodded endlessly with no answers or end in sight. The worst part is there is no amount of explaining or hospital reports that will convince some doctors. Moments like this are when my desire to take my hands off the wheel comes flaring up. By that I mean I want to say well fine if everything you said is true then I can stop all of this medicine and we'll just see what happens. I can just not bother going to the doctor because clearly you have no idea what to do with me. Based off my hospital records you don't seem to be doing me much good either. It's also moments like this which reinforce my standing opinions of not dealing with doctors until I'm seriously, seriously ill and that modern medicine treats people like one of two things idiots or dartboards. Which I am neither.

I like those odds

Some days I really think that if I wasn't Mormon I would play the lottery. One in a million odds seem to be my specialty. I can give a great example. Yesterday I had a methacholine challenge test. If you're scratching your head wondering what that is don't feel bad. I'd never heard of it either until my allergist mentioned it. It's to confirm or rule out a diagnosis of asthma. It's important to know if you're dealing with asthma and allergies or asthma-like symptoms and allergies.

The premise of the test is that a pulmonary function test (pft) is performed to get a baseline. Then you breathe in a saline solution. Another pft is performed. Finally in stages you breathe in methacholine and take another pft after each stage. In theory what should happen in someone with asthma is the following: the lungs should react and there may be mild upper airway constriction. It causes a very distinct and noticeable drop in pulmonary function. If they see this drop in pulmonary functions then it's considered a positive test result which is an absolute indicator of asthma. Now it should be noted that a negative test result doesn't necessarily completely rule out asthma it just argues against asthma.

In theory no one should have an allergic reaction to methacholine. That should have been our first clue. The test has been around since the '40s so it's considered very safe.  Well you're looking at one of the very few people to manage to buck that trend. The test was going fine which should have been the first sign something was bound to go wrong. I'd had the first dose of methacholine administered to me and the pft done. While I waited for the next dose I started coughing. Now that isn't at all surprising I'd been coughing already for two days from being off most of my medications. Also methacholine is known to cause cough in some people. The problem is that methacholine should respond almost immediately to albuterol.

When I started to flush the respiratory tech, Micheal, started to get a little panicky. I can't blame him, if you've ever seen my list of allergies you might panic too. Then I asked the question that really made him panic, it is normal to feel itchy? That was the big red flag that something was going wrong during this test. So he started a nebulizer treatment but my coughing got worse. This was the point he switched to oxygen and paged the doctor. I managed to get two doctors and another tech in the room. Benadryl, oxygen, and a little bit of time later I was back to stable again. I did manage to give them quite the scare though with my heart rate. It was bouncing all over the place from 105bpm up to 140 bpm and everywhere in between.On a positive note the pulse oximeter didn't register a drop in O2 saturation so that was good.

So the moral of the story is that it is unlikely that I have asthma. The evidence just doesn't support it. Do I have something that looks and acts remarably like asthma, yep. Is it actually asthma? Probably not. Also they were able to draw blood to check a particular level in my blood. It's called a serum tryptase level. For several of the diseases they are considering an elevated level is a clear indicator. The other moral of the story is that I run the odds and well. If there is a one in a million chance of it happening you might want to plan on it with me.