The post where things aren’t so rosy

Things are a bit of a mess right. Medically, at least. As busy as I am, my body keeps reminding me of just how sick I am. And I hate it.

Since mid-October my body has been fighting with some strange malady. At first, I thought I was tired… overwork… stressed. A wonderful and relaxing romantic weekend away with the hubby was just what I needed. No school work, no work, no kids… Yet, this thing persisted.

This awful, strange beast in my body kept shouting at me, “listen! I’m here! LISTEN TO ME!!” And, as I usually do, I cranked the radio and drowned it out. But just like an eager parent, it remained… banging at my door…. stopping the party… kicking my friends out. And now… it’s grounding me. Or, maybe worse? To be honest, I’m not sure yet.

See? Now there are tears. Of course you can’t see them. I’m writing on a blog… no pictures or videos. But you may sense them in my writing.

Before I left for my gloriously oblivious weekend away, I contacted my endocrinologist for some routine blood tests. This was surely the result of my normal blood chemistry fluctuations, I thought. My sodium or potassium were surely just off. My endocrinologist, on the other hand, performed a mega list of blood tests. Every hormone and hormone secreting organ in my body was tested.

Then things got interesting…

The blood test came in – all normal. I sighed after the nurse told me this. But I asked her, “why do I feel this way?” Her answer, “We’re not sure, but one more test is pending and it will take about a week to get back – the IGF-1.” I had never heard of this and figured it would eventually come back normal. I went on with my busy life.

Then things got… worse…

The transient tachycardia, breathlessness, headache, near syncope, and exhaustion I had been feeling off and on for a couple of weeks blew up in my face.

This was yesterday morning. I first noticed it as I walked up the stairs to my second floor classroom. I brushed it off. After all, I was getting used to this feeling. I sat down. I had some water. I carried on with my day. I started to feel normal again. Then 30 minutes later, I went to stand from my desk and could barely make it back to my chair. It felt as if a weight sat on my chest, pressing the air from my lungs. My head swirled. My heart threatened to jump out of my body and dance the rumba on my desk. I gave it some time and tried to stand back up. Again, it pulled me down. The suction of the thing was far greater than any Dyson or Hoover vacuum. I was beginning to worry.

Thankfully my co-worker dropped in for a little chat… but I couldn’t chat let alone stand… let alone breathe.

A few minutes swirled by and I found myself on my way, co-worker in tow, to the emergency department. Seeing as I work at the hospital, my walk was not far. And thank goodness for that. My husband came shortly after and I was seen by an eager emergency medicine doctor who tried to thrust two IVs of fluid in me.

This is when this scenario could have gone… terminal. If I had not been a vigilant patient, learning everything I needed to know about my chronic conditions, I could have died from a simple overdose of potassium chloride. The simple, benign fluid would have caused water intoxication. It would have been quick, too.

But I stopped him. I told him, “I have diabetes insipidus and am on DDAVP. You are not giving me any IVs until you speak with my endocrinologist.” And he did. And she told him NO IV!!!

2.5 hours later, I was released a few pounds light (from the water loss – 7 trips to bathroom in 2 hours will do that), dehydrated, and with an increase in my desmopressin. The hope being, by increasing the dose, I will hydrate on me own. Safely.

This brings us to today…

I felt like crap this morning but insisted on going to work. Sitting in bed is not for me. I felt iffy at the beginning of the day. The few episodes I had were not nearly as intense as the day before, and I thought I could handle this. As the day wore on, I even got feeling better. I had more energy than I could remember having the entire month of October. Then my endocrinologist’s nurse called.

I was told to call Thursday but I assumed she was merely following up. She went over the situation of me being in the hospital, the doctor increasing my med. She asked me how I was doing now, and despite a report of a persistent headache, I told her much better. Then she dropped the bombshell… “Doctor wanted me inform you that the IGF-1 test came back…”

Oh, you don’t need to tell me, it’s fine, I thought. All the tests came back normal, so would this one. Or not. My IGF-1 is elevated. I have to go through another glucose tolerance test. I am not looking forward to that. But I know, because we discussed this at my previous appointment – the one in which she scheduled a bunch of blood work and I was still blissfully oblivious, that there will probably be an MRI of my pituitary gland in my near future.

And we all know why MRI’s are performed.

I am now exhausted but cannot sleep. I am worried. I am nervous. I am scared.

My life – this hectic life, filled to the last second with so much to do – is at a stand still. I can’t breathe. I can’t relax. I am anxious, awaiting the next test… and it’s results.

Things were rosier a few weeks ago. Why can’t I go back?

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7 responses to “The post where things aren’t so rosy

  1. I am so, so sorry to hear this. First of all I am glad you are an observant patient and knew when to speak up and tell the doctor to contact your endocrinologist. But more than that, I am keeping you in my thoughts and hoping that whatever happens, you know what you are dealing with soon and can start dealing with it. Waiting can be the hardest thing in the world, and I know nothing I say will make that any better, but I want you to know all the same that I am thinking of you xx

    • Thanks Amanda. The place I’m in right now is a scary one and I hate this feeling of helplessness and waiting. It drives me nuts. My husband says put it out of your mind and focus on school work. How can I do that?

  2. I cannot remember if you posted your med cocktail(if any) but all of the symptoms you’ve described revolve around a couple of different types of meds.

    • Lili,

      My docs considered this. Believe me, I considered this too. It doesn’t appear to be my meds (of which I have reduced considerably in the past year thanks to my awesome PT). For now, I must wait until I take the glucose tolerance test on monday and then give it a couple days to come back.

  3. Endochick,

    I am really sorry that everything is so stressful for you now and that you have to wait for information. Waiting for information in situations like this is never fun and I know it will be difficult for you but you will get through it. You are incredibly disciplined and your will is very strong (in the best possible way)! That is going to be very useful in the next few days at handling the waiting game and finding a balance in how active to be or not be.

    Please continue to listen to your body and rest when you need to so that you can get over being sick and do the test when scheduled rather than it being pushed back further… prolonging the wait. Focus on getting well enough to do the glucose tolerance test on Monday. I know you are trying to keep active with work and things to distract yourself from the phone call but please remember that your body needs sufficient rest to get over being sick in time for Monday’s test. Having the stress of going to the emergency department thrown into the mix surely just revved you up even more. Please make sure you are getting enough rest between now and Monday.

    When what you were told over the phone pushes back into your head between now and the test, try to distract yourself because ruminating over it will make you feel worse and they truly *don’t* know for sure what’s happening.

    What they told you on the phone (about WHY the IGF-1 might be elevated) was pure conjecture. They simply don’t know anything for sure. From what you told me, all they know for sure is that your IGF-1 is elevated. Period. They can guess all they want but they don’t *know* why at this point. So, please try not to allow that phone call to make you a nervous wreck because they really don’t know why. (Easier said than done… I know).

    In regard to the emergency department wanting to give you IV fluids when you knew that it could hurt you… As always, you advocated for yourself. This is so important for all patients to do but especially patients with complex situations such as yours. Thank goodness you are so good at advocating for yourself! I’m so sorry for all of the stress you have been experiencing and that you’re going through now.

    Hang in there! I know it’s very frustrating to wait (especially after a phone call like that) but you are very strong and you will get through it. I’m sending positive energy your way!!

    Jeanne

  4. I was suggested this blog by my cousin. I am not sure whether this post is written by him as nobody else know such detailed about my trouble.

    You’re wonderful! Thanks!

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