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!

Be gone Weggie....and stress

Summer is here and my anniversary has gone by. That's right. My one year anniversary of getting diagnosed with Wegeners. However, it seems like this time last summer, I had a better wrangle on my disease than I do right now. It seems like no matter what I do, I can't seem to beat the bugger out of my system. It's a very long, uphill battle and I'm starting to get particularly frustrated with it all. Everything was going best kind until recently. My hand started to hurt, similar to the way it hurt when I first got diagnosed, my eye has been sore and swollen for weeks now and I've had sinus headaches EVERY DAY! Do you know the funny thing? There's one little 6 letter word that is hindering me from getting better. One little entity that exists in my life that I can't seem to get control of. One little terror that seems to get bigger and bigger every day......do you know what that is? Yup, STRESS!

I have a bunch of stuff going on my life that is stressing me out like you wouldn't believe. I've always had a problem with stress. I'm a very sensitive person who worries about other people, even when they don't give me the respect of giving "two hoots" about me. When someone is "mad" at me, or displeased with me for some reason, I can always tell. Then, I start to worry about it. Then, I drive myself insane coming up with various scenarios as to why this person is mad or what I could have possibly done to 'P' them off. Then, when it's someone who is, or should be, of some significance in my life, look out! I actually spend nights, lying awake, thinking about why this person is treating me the way they do! I don't understand, I'm not a bad person, or, at least I didn't think I was. So, why is this person making me feel like one? Why would someone turn around and treat me like I'm nothing when all I've done is welcome them in to my home and comfort them when they were down? I actually care about this person and just don't understand. So, see, this is what goes through my mind. This is what stresses me out.

Then, of course, there are the regular life stresses. You know, the day to day things. Money, work, this and that. So, they don't help either. Again, they're contributing to the whole lying awake at night thinking, thinking, thinking. Maybe that's my issue? Maybe that's why I stress so much? I think too much! The thing is, what people don't understand is, I can't handle stress like a normal person can. When someone does something to stress me out, it only makes me sicker! My disease is an auto-immune disease, and because of the chemo and pred, my immune system is compromised. Therefore, when a normal person gets stressed, the effects aren't as adverse as they are for me. I get sicker, or hinder my remission, which, unfortunately could lead to my death. All because of that stupid 6 letter word (oh yes, and the German one too, of course). So, please, I'm asking all of you. If you care about me at all or consider me a friend, please think about me before you act the way you do. Unfortunately, I need people around me who are going to walk on eggshells for awhile. Now, I'm not saying, "don't ever get mad at me because I'm sick", because, if I deserve, please, I'd rather know! I generally try to "Not" piss people off, but, some things are unavoidable at times. What I'm talking about, is, think twice about your actions before you do or say something. Think, "in the grand scheme of things, if I act this way toward L., is it really necessary? Unavoidable?". If the answer is yes, then, go ahead. If the answer is no, but, you have to search in the cockles of your heart to find that, then please, listen to it. I need everyone's help on this path to remission. I need love, support. I need to stop stressing out unecessarily!

While we're on the topic of stress, let's talk about prednisone. Now, THERE'S a stressor! I have gained so much weight in the past year, from the prednisone, that I don't even know what to do anymore. My doctors keep telling me the weight will come off when the pred goes down, but, it just seems like an eternity away. I'm sick of the pred now. I want to be finished with it! I no longer want to be its friend. I mentioned this to my rheumy the other day, well, maybe not so dramatically. He told me he wants to get me down to about 10mg per day as 7.5 is the amount of "pred" (or corticosteroid) which is naturally produced in your body by the adrenal gland. Once I'm down to this "magic number" as he put it, the adverse effects from the BIG P will be minimal. However, he did tell me that once I'm down to the number, they can then tweak my chemo dosage and move me to a less harmful drug called cellcept. This is more of a maintenance drug than anything else. However, I still can't get on with my life while on it. I'm at the age where all I can think about is my future, kiddies etc. While on these medications, I'm not allowed to get pregnant. When talked about the cellcept, I got a little excited, thinking, YAY, I can have babies in a couple of years! But, no, I can't have babies while on cellcept either!! What they'll need to do is find a time where I'm completely healthy, stop all the medications, let them flush out of my system for 3 months, then, start trying to get pregnant! The longer I'm off the meds, the more I risk getting sick! So, all in all, it sucks! The only good thing about the cellcept, is the fact I'll be getting rid of the chemo. The cellcept is much less harmful and doesn't cause crappy things like secondary cancers later on down the road.

Now, I don't mean to be a "Negative Nellie" today, but, I'm just having one of those days (weeks), ya know? I just want all my stressors to go away. Or, at least be able to handle them better than I do. I want people to really think about how what they're going to do or how they're going to act will affect (or is affecting) another person. Unless, of course they deserve it. But, most of all, I want this disease to go away. I'm ready for it go away. I let it in to my body for over a year now and it has certainly overstayed it's welcome. So, this is me kicking you out Wegener's. GET OUT!!

bring it on 2008

New Year, New Me?.......

It’s 2008, another year has gone. Time goes by so quickly, before you know it, you’re old and grey (though, I almost got that down pat now) and you’re looking back and saying, “What the heck?”. That’s kind of how I feel about 2007. It’s definitely a chapter which is going to stand out in the table of contents of my life. One big thing, I got married. Not just married, but, married to the most wonderful gentleman on the face of this earth (it’s a tie with him, my Daddy and my Poppy of course). The other big thing is my friend, Weggie who decided to rear its ugly head around the Spring of ’07. So, with these big events I also learned a lot about myself, my family and my friends.

I learned that I’m a lot stronger than I think I am. I used to think of myself as a weakling. I couldn’t imagine what I’d do if I ever got diagnosed with a life threatening illness. I figured I’d completely crumble, have a nervous breakdown, send myself in for the free fruit basket. But, no, I trudged along and faced everything with a positive attitude. I’ve come to notice that if you don’t have a positive attitude you’re pretty much out of luck. I could have sat in my bed and wallowed in self pity, but, I decided to face each day with the best attitude I could possibly muster. So, my advice to anyone newly diagnosed? Have faith, you will get through this, I promise!

What did I learn about my family and friends? I learned that most of the time family really will be there for you through thick and thin. I learned that my Mama is like a mother shark when her baby is threatened, lashing out to attack anyone in her path. I learned that my Dad is definitely my rock in a nasty situation. I learned that my husband has nothing but love for me and will not leave me if I turn in to an ogre like state (that was proven with the high dosages of prednisone). Friends? I learned that the ones who you think may be your friend, really aren’t and the ones who make you the maddest, are probably the ones that are going to be there for you no matter what. Take Miss V, for instance, she makes me SO MAD sometimes (and I can say that because I know the feeling is mutual) but, I think back to when I was in hospital and she stayed on the hospital floor or how she’s always at me “did you take your pills”, “are you feeling sick”, “are you coughing up blood”…blah blah blah ….and it’s gets me thinking, I wouldn’t trade her for the world (morning nasties and all).

So, what am I getting on with? Well, it’s 2008. Here’s to remission. That’s my goal for this year!


How is so far??...................

Well, with the goal of remission still fresh in my mind, I have to say, it’s not going so well thus far. It started off about the beginning of December when I started to feel a little like crap. I was coughing stuff up, my joints were a little stiff, I had fevers, chills, exhaustion. But, do you know what I did? I ignored it….BAD IDEA. The doctors asked me how I was feeling and I said, “oh fine”, just because I didn’t want the dreaded prednisone to be upped. But, do you know what? The patient can certainly lie, but, the numbers don’t. My ANCA was continuing to rise. So, we went to see my rheumatologist. He says “ANCA may not necessarily be cause for concern. It could mean a flare up, or it could mean nothing”. So, we left that appointment with a renewed faith that this would be all over soon. The next day, I felt awful. Just plain icky. A week later, my eye started to get red. I couldn’t even touch it for it felt like it may burst. There was pain and pressure and throwing up and everything. Finally, I went to my family doctor, who then sent me to the emergency room to see the ophthalmologist on call. Yippee. Another doctor. Turns out, I developed a disease of the eye which is secondary to Wegeners, it’s called “scleritis”. It’s the thinning of the eye lining. Something which you don’t want to happen. If I happen to get poked, my eye could burst (I know, thanks for the imagery, hey?). So, the dr. put me on some prednisone eye drops and told me that if it doesn’t get better they’re going to have to raise my prednisone (THE DREADED DRUG). I took my drops, saw him a couple of times and carried on. Then, I started getting REALLY sick. I spent the entire Christmas holiday in bed. Every day I was throwing up and feeling absolutely awful. I figured it was because my nephrologist had raised my chemo to try and beat the crap out of the ANCA. However, I was set straight during my rhemumatologist and nephrologist double whammy appointment.

It started out as a lovely day. Mom, Dad and I went to see the rheumy. He was as lovely as ever. Nice and soft spoken and gave me a tip that my crazy nephrologists likes boston cream doughnuts, if I ever wanted to bribe him or something. Then, we went to see said nephrologist and he dropped the bomb(s). BOOM….you’re having a relapse…..BOOOM…there are a lot of doctors really worried about you…..oh and for the nuclear BOOOOOOOOOM…..we’re raising your prednisone. Yucky, yucky and YUCKY. So, now I’m up to 50mg again. My ANCA is back to where it started when I first got sick AND I’m completely frustrated with my little German “friend”. Oh, and where’s all that positive energy? Perhaps I should go check the toilet as I probably threw it all up. There’s still a little bit left in me, and I’m holding on to that. I’m positive that this will be the year for remission, but, I have to get over this hump. That’s what I keep saying…it’s just to get over this hump. Soon, I’ll be feeling much better and back to my old self again. Let’s just hope it’s soon, rather than later.

Where do I go from here?.........

So, I’m continuing to take the high dosage of pred and high dosage of chemo and we’re just waiting to sock that Mr. Weggie in the face. I just need to muster up enough energy to do it. I know if I look deep within, continue holding the hands of my family and friends, I will beat the crap out of him. It’s just taking time. I guess if time is what it needs, then time is what I’ll give it. However, I do know one thing….Mr. Weggie better watch out because when we do come face to face, he’s going to wish he never met me!!