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?

The day of the Doctors

Yesterday was a whirlwind day. It was crazy, but good.

To begin:

Endocrinology:

I arrive and park my car. I plug the ear phones into  my ears and put the jack thingy into my cell phone and hit random on my music player  and what comes up? The Imperial March from Star Wars, which I had no idea why it was in my phone, but sort of fit the occassion and gave me that extra boost I needed to barge into Dr.’s office and demand the attention I needed.

Turns out I have autoimmune thyroid disease and he doubled my dose of thryoid medicine. Hopefully this will help me to feel somewhat normal soon. I also mention the smoke odor I keep smelling on occasion that no one else is smelling. He, too, was concerned. He did say he’d heard it before. My other doctor said it could be tied to migraines and seizures. He was going to look it up. My tests all came back and pointed to further testing for Diabetes Insipidus so he is scheduling the water deprivation test. I am to call Thursday morning and find out when that will be – it will be soon.

Urology:

Yeah, so, this was pretty much a waste of time but needed to close my case with the pee docs. 🙂 It was nice, I might add, to cross a doctor off my list for a change instead of adding one to the list. But there really wasn’t anything the urologist could do for me. He couldn’t give me any bladder control meds because that would render the water dep test pointless. So, all in all, it was a quick visit.

So I have another autoimmune disease because scientist are already thinking endometriosis may be an autoimmune disease. Lovely. They also think all of this is tied to my migraines.

During my second trimester of pregnancy with my daughter I started passing out – sort of like I’ve been doing recently. I was refered – reluctantly – to Cardiology for a holter monitor because of my heart murmur. I was then diagnosed with dysautonomia and told to wear compression stocking, increase my salt intake and water intake. I was to take every measure possible to avoid extreme heat and dehydration. My delivery of my daughter was nothing short of traumatic. I had contractions, five minutes apart for a week before they would admit me. They finaly had to admit me because her heart rate was unstable. When they broke my water there was meconium in the fluid and was given 4 hours to deliver before a c-section. Literally 4 hours later she shot out of me like a canon ball. No one was prepared. The doctor was literally pulled from another delivery – he had to leave in the midst of sewing up a woman and they dressed him enroute. My daughter was practically out by the time he got there and he almost dropped her. She came out with one arm stretched out like under dog coming to save the day.

Holy freakin’ crap – When I looked up dysautonomia for that link above I was reading and I quote: “In other cases, the heart may race (tachycardia) for no apparent reason (known as Inappropriate sinus tachycardia),the patient may experience severe migraines regularly, or the kidneys may fail to properly retain water (diabetes insipidus).” WOW.

It’s like one huge Pandora’s box has been opened. Am I about to be cursed with another summer suffering with the compression stockings? Oy.

(I edited this post because I am finding myself jumbling things in the past days and not making sense. Doctors appointments are jumbling together. Forgive me and bear with me. I will get it all straight, eventually.)