Rough month Five days in..

So, I mentioned this was going to be a rough month right? I don’t think I comprehended how rough. I was focusing on the how much I had to do, and not exactly it entailed.

Yesterday was the preliminary visit with the Hematologist after the discovery of four blood clots. I mean, I know the blood clots are bad.. I was freaked out that I had one much less four… and let me clarify… IN ONE ARM. So now after meeting with the Hematologist, I am wicked freaked!! I am already on blood thinners due to a genetic clotting trait. I had thought that this was the cause. Apparently not. Now I am on TWO blood thinners which there will be no stopping a bleed.. and yay.. surgery Monday.. But let’s get through the next couple days first.

The Hematologist has his suspicions about what is causing it, but tests first. But you know how they work, they drop the worst case scenario so you can FREAK OUT for days and then be HAPPY your diagnosis is only.. this. Well, this compared to that is of course better when I have been FREAKING OUT for days about something much worse..

Here’s the problem. WebMD, MEdicineNet, all the sites you can get the info on the tests they are running AND the results.. because you can diagnosis yourself now with these tools. Your doctor has even sent you down the path.. he probably told you how close to death you really are. Even tho you are a perfectly healthy person. I mean, my neurologist loves to remind me that “the BIG ONE” is imminent.

Problem is today.. my better than this, isn’t much better. And now I have to wait for two more weeks. And try to not freak.

In the mean time.

My CVSr, for those not familiar, Cyclic Vomiting Syndrome, went back to the specialist today. We have been pushing to have the inpatient treatment done BEFORE his starts becoming episodic. They evaluated him today. Finally checking his CoQ10 levels. But we have scheduled our preliminary time out for his inpatient based on him being inpatient.. So hoping they scheduled him for that time. Admissions person is out today. So we will review that tomorrow. But did reevaluate all his meds again and upped some do to his having grown. His EKG is scheduled for Tuesday. Let me just tell you how much that sucks as a parent. That the only thing that can help your kid requires an EKG every time he gets it. But as with all the medication you are given.. We have determined that the alternative is MUCH MUCH worse. We have been there, done that.

Tomorrow, I have an early morning appointment with an endocrinologist. It may seem like we are sickly.. we usually aren’t like this. It is just hitting all at the same time. :/. Anyway, we have been watching my Vitamin D levels for 3 years. I have been deficient for all three. Started on a supplement year one. Year tow there wasn’t a change, so upped the amount. Still no change. They had requested upping it again by the same amount for year three. I started doing my own research. Mainly because my diet is SOOOOO different. I came across research and forums that I discussed this with people with similar issues and what was working and not working for them. At that point I quadrupled the amount I was supposed to be taking. Fast forward to a month ago when I had a recheck done. Smuggly thinking that I had figured out the secret. That my doctor would be impressed. Imagine my very deflated ego when I yet again tested deficient without a single digit change to my numbers. When they called to give me my lab results, they asked me if I was even taking my supplements. HA! So, off to another specialist to see why my body isn’t working within the “normal” functioning parameters.

This has been a week of medical adventuring. I’d like to stop. Can I go back to last weekend when all I had to do was the Everything Fun Run?


This entry was posted in Uncategorized and tagged , , , , , , , , . Bookmark the permalink.

2 Responses to Rough month Five days in..

  1. sending healing thoughts 😘😘😘

  2. Pingback: Prepping for an appointment | Adventure or Rant

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s