Hit the road Jack...err....Wegener's

Dear Mr. Wegener,

You have overstayed your welcome. I think it is time for you to hit the road.

Sincerely,
BubbleGirl


Wouldn’t it be nice? Yes, it would be just lovely if I could simply send a note to Mr. W to let him know it’s time to vacate the premises. Kind of like an eviction notice, except, I’d be nice about it. I’d simply let him know that perhaps he should move on elsewhere. Find a new home. Invade a new space. It’s not like I’d be mean, though I certainly should be. For “lovely” Mr. Wegener has done nothing but reek havoc recently and quite frankly, I’m sick of it!


What? A Clot?.........

So, I’m going about my business on a beautiful day in lovely Halifax. I finished work for the day and was headed out to the “Harbor Hopper”…..an AWESOME tour, if you ever go to Halifax, you MUST try it out…….anyways, the ride was great. After the ride I started to feel a little pain in my calf. I didn’t pay much attention to it. So, I went back to my hotel, had a sleep in the most luxurious bed ever and got up for work the next morning. This is when I noticed my calf and ankle were both quite swollen. Again, I didn’t pay much attention to it. I chaulked it up to eating saltier foods while I was away. However, by the time I reached the Halifax Airport at 8:00 that night, my ankle and calf were swollen grotesquely. By the time I got home that night, after my flight, my foot and leg had a sprinkling of little red splotches. Again, me being the way I am, I figured it had something to do with the travel. However, the next morning when I woke up and my foot had turned bluish and my calf was huge and it looked like a bingo dabber went mad on legs, I figured there could “possibly” be something wrong. I made a dr.’s appointment for the following morning and tried to forget about it. After all, I was planning a big company function at my house for later that evening. Speaking of the function, I spent the entire evening next to the fire pit, wrapped up in a blanket in fear of someone seeing my yeti foot and swollen leg. So, the next morning it was off to the doctor again. Little did I know that’s where it would alllll begin. My doc took one look at my leg, whipped out her measuring tape and said, “oh my, your calf is swollen 4 cms!”. So, she rushed me off to the hospital to have an ultrasound. Sure enough, after some serious poking and prodding and a visit from the most handsome doctor I have ever seen (even though I was down to my skivvies), they diagnosed me with a blood clot. GREAT!! Sure why not add something else to the list, it’s fine, go ahead. So, off to the emergency I go. After waiting hours upon hours, I finally get a shot in the side of a drug called lovenox and am prescribed a regiment of pills called warfarin. The best part? Oh, I get to go to the hospital ER EVERY DAY until my INR (the thickness of my blood) is showing the warfarin is at a therapeutic level. With a wink and a giggle the doc said, “don’t worry, most people usually only need 3 days of the shots”. Well, as we know, I’m not like most people. I DID, after all, manage to acquire a disease which only affects one in a kajillion people (ok, maybe not THAT much) and I got to be that LUCKY one! So, with considering my “luck” it took me TWO weeks of lovenox shots before I was at the therapeutic level. I swear, my sides were nothing but big black bruises. During the two weeks, I got to do fun things like, spend 6 hours in the major trauma unit of the ER because my BP was 220/108 and I had a super bad headache, so, they thought I was either getting ready to have a stroke, or, an aneurysm. Turns out, everything was fine, but, there was quite a lot of drama in that particular unit. That’s where all the major cases went, so, I heard and saw it all. Oh, I also got to spend one of my vacation days in a hospital in the spot I was vacationing! That was great too, it was like, “tour of the hospitals”. Now, however, my warfarin is at the therapeutic level and I’m currently taking 12mg of it. So, I need to continue getting blood work weekly to make sure my INR stays right where it’s supposed to. Oh, and guess WHY I got the blood clot?? Just guess. Yup, you guessed it, begins with W and ends with R…... What a Jerk.


Even more new meds???...........


So, I go back to my own specialist, my rheumy, and fill him in on all the wonderful events of the past couple of weeks. Guess what he does? He tells my disease is really not in the scope of anyone down here anymore. With the entire goings on and such, I need to see someone who specializes in the disease. Guess where the nearest weggie specialist is? Oh, only about a couple of thousand miles away! So, Rheumy consults with said wegener’s guru and comes back with a load of advice for me. First off, being on the cyclophosphamide for 15 months is a BIG NO-NO. I should have only been on it for 6-9 months. So, there’s a new plan. Methotrexate. However, this chemo doesn’t have as many harmful side effects (such as secondary cancers, early menopause etc. etc.) as the cyclo does. So, it’s a good thing. I get one treatment per week. On Saturdays. Then, On Sunday, I’m sick. Nausea, vomiting, the whole nine yards. But, by Monday morning, I’m bright eyed and bushy tailed…or so I’m supposed to be….however, it’s not really working out that way, thus far. It’s Monday evening and I’m still up because I feel like a big bag of yuckiness….so, we’ll see how this methotrexate works out for me. Clearly the cyclo wasn’t doing as good of a job as anticipated because my ANCA was back up to those crazy levels again. So, I’m continuing on with the Metho until I see the Wegener’s Guru at the end of August. I’m looking forward to it, actually. Finally someone who REALLY knows the disease and can REALLY give me some answers. This really has been an uphill battle, however, I’m still armed, dangerous and READY for whatever Wegener throws at me!