hi again

So I thought it was about time to start blogging again. Its only been like over a year.
Big things haven't really come up so I suppose really I just got lazy.
Now for my medical recap lately... oh the joy.
1st im going through a potential breast cancer scare as of just this week. They have done a mammogram and ultra sound but now want to do a skin biopsy just to rule out IBC. So lets all cross our fingers that my weird boobie thing is just no big deal.
My vascular health is the same no worse no better, so thats good.
I have developed heart palpitations which actually sucks butt. But the occasional nitro helps that.
My tummy is well there. Who knows maybe my celiac is screwed idk cause I still randomly puke which let me tell ya is a bunch of fun.
Anyway thats all for now cause typing a posy on your phone is a pain.

Its been awhile now hasn't it.

WOW, its been forever since I have posted, but I am happy to say that due to a class I should be posting more.
So here is the update, I am going back to Mayo to see a neurologist on 4/4/12, he is suppose to be the best in the business, so lets cross our fingers on this one. I hoping to get answers since I lost my job due to this stupid illness a couple weeks ago.  I am back on Coumadin which sucks as we all know I was a freeze baby before I am now more a freeze baby.  The blood thinner is suppose to help the "events" though so were hoping it works so far no luck in that department I keep having them.  We shall see.  The headaches are still pretty much the same too so that just bites too.
Now for some good news:
I graduate from NHCC this spring, in May as a matter of fact.  I am finishing up the last 4 of my classes as I type and then freedom for the summer... Can I get WHOOP WHOOP...  after commencement on May 11th get together at my house... :)     I am planning on going back to Metro state in the fall but I need the summer for a break I think after almost 3 years of college I have earned it.
Anyway that's all there is about for now. Till next time kids.

I'm headed to NYC

So I haven't updated IN forever, so here it is, to the best of my ability, limited as it maybe.
I have been having tons of problems lately, and quite frankly they do not know whats causing them.  It could be TIA's, it could be seizures, it could be complex migraines, who really knows at this point, the doctors here sure don't.  My "good" doctor Dr. Foley thinks it's my FMD and hence my trip to NYC. 
I will be going out to see Dr. Jeff Olin who is the top FMD doctor in the country, and at that time (we hope) he will be deciding if I will be needing stents or maybe angioplasty in my carotids to hopefully stop these "events".  Which is what I have now started to call these almost daily things that have been happening.  What else has been going on is my right side has been going almost like paralyzed where my face droops and I cant move my arm or leg for anywhere between 10 minutes to an hour.  I then get a God awful headache and extremely tired afterwords, and it usually means my day is shot.  For those who have seen me have them they say I get totally pale in the face too and I can't smile normally either.  Its very scary stuff to say the least but really its all I can explain about it now.
I have just been re-scanned with MRI/MRA and there are no new findings at all so there's nothing to report with that, and it does show that I have not had a stroke, so this is a good thing. 
So wish me luck in New York because the whole reason we are going is to hopefully get answers and surgery.

It's been awhile...

Well it's been awhile since I've posted so I thought I'd give a quick update on what's been going on in the health department.  I can thankfully say, not much.  I have been pretty much recovered from surgery now for a while and been feeling pretty good.  I still don't have much of an appetite and still have nausea and to be honest I am not sure if this is normal or not.  The weight loss has slowed but due to the loss of appetite I am still losing some weight.  I think its a good thing but were a little concerned.  I will address this with Dr. Foley the next time I go in and see if this is "normal" or what.  But for now I'll just deal.  I also need to go in for some blood work to see if my levels are normal for my cholesterol and what not (should have done that in January) talk about procrastination!
Other than that nothing much is new, still struggling through school, its getting tougher for some reason, I took some (what I think are hard classes) this semester (Math, English and Biology) and they are proving to be a challenge now.  But spring break is just around the corner and we are looking forward to a much needed vacation to Florida to visit Leanne's parents which see hasn't seen in like 4 years.  And on a side note I get to see the ocean for the first time ever!  So that's about all for now, I will try and post a bit more often once school settles down a bit.
Love to all,
Chane

MALS Surgery & Update

A post from Leanne, to give Chane a break…

Time for an update and some more background info for the curious :-)

Last Tuesday, Chane had surgery to fix one of the two rare(ish) artery diseases she has. At this time, there has still not been surgical intervention for the dissection in her carotid artery caused by FMD. This surgery was to correct MALS, or median arcuate ligament syndrome. For those who love Google, it is also known as CACS, celiac artery compression syndrome. So what does all that medical jargon mean?

There is a ligament that runs close to the diaphragm (I haven’t quite been able to pinpoint how best to explain where it is, but this is a generalization, see picture below - it's the first item from the list on the right).

Retrieved 3 Feb 2011 from: http://www.imaios.com/en/Media/Images/e-anatomy/thoracic-wall-breast-illustrations/diaphragm-intercostal-muscle-e-anatomy-imaios

In MALS, this ligament is a bit off in one’s anatomy and it comes down to compress the celiac artery, which is one of the arteries that feeds the stomach & digestive tract. One of the best analogies of arteries is the “straw.” So think of a straw, now imagine this ligament coming down and squishing it. Might cause some blood flow problems right? Yep sure does. When your digestive system doesn’t get the blood flow it needs to function, well, stuff doesn’t function right.

So how exactly did this affect Chane? She lost her appetite. She had pain after eating, pain that continually got worse and was quite unbearable towards the end. She had near constant nausea. She lost weight, a lot of weight, especially for someone not actively trying to lose. In general she felt like crap. We didn’t test, but we believe that she was beginning to suffer from malnutrition because her digestive system was unable to effectively absorb nutrients from what little food she was able to keep down. By the time we suspected it was that bad, we knew the surgery was coming so there was no point.

The surgery itself was to snip the ligament so that it wouldn’t compress the artery. There was always a chance that they would need to do more work, such as an arterial bypass, if they got in there and found that things were worse than believed. But the surgery went well! Chane had a tag-team of surgeons working on her. The majority of people have an “open” surgery for something like this. Well, it’s been popping up more and more in medical literature that it is possible to perform the procedure laparoscopically. So there was a laparoscopic surgeon to attempt this method, but also a vascular surgeon who had performed this surgery many times before as a kind of “back-up” in case they were unable to proceed laparoscopically. It took 3 ½ hours, but laparoscopy was the way to go! Much shorter recovery period, and Chane has the distinction of being a pioneer. It was the first laparoscopic release of the median arcuate ligament done at Fairview. Pretty cool eh?

So. Now for the update, but I’ll be quick. Chane is recovering pretty well, had a bit of a set-back recently when a hematoma (build up of blood) formed near one of her incisions, compounded by a bruised muscle in the same vicinity, but doctor’s orders of heat, ice, and meds is getting her back on track. She has already had an increase in appetite, which is such a good thing! Time will tell how truly successful the surgery has been to ease her tummy woes, but so far so good. Once she gets past this “dumb bruised muscle” she’ll be feeling much better :-)

As a side note, I just want to say that this does not fix all of Chane’s medical conditions. Unfortunately this does nothing for the FMD and she will still be affected by that. But at least she will have one less thing to worry about (as her mother put, which is so true!).

Thank you all for the well wishes, prayers, cheerleading and support these past few weeks!

Surgery for MALS

Well last week (I think it was) I had the consult with the surgeon and I now just today I got the call that I will be having surgery for MALS on January 25th.  They will be tag teaming me and attempting to do it laproscopicly first to save on recovery time. This will be my doctors first attempt ever at doing this surgery and doing it laproscopicly, hence the tag team. So the other doctor on board is an experience MALS doctor who only has done this surgery by opening up the belly, he will be there to assist and if need be open me up and take over if they should find the need.  So I guess the choice is really out of my hands at this point I don't get a say in what happens at this point really but continue to read. My choices are simple stay in pain live with these diseases that are debilitating, risk surgery that may or may not work (my doctor gives it 70% chance of giving me some relief) the surgeon wouldn't give me any odds at all. If you research MALS you will find that sometimes surgery works sometimes it doesn't, I am going to be optimistic though that this will work for me cause this crappola sucks and I want out of this daily pain. 
The hardest part in all of this is I just cant suck it up.  No body knows what its like going though all of this, my world changes daily, I have 2 diseases that will never ever go away.  They constantly throw curve balls at me and I really do my best at taking one day at a time, but I don't look sick, but I am.  Its hard I'm angry, but really who wouldn't be.  Can anyone reading this say that they would have or would like to think about dying at 37? Because whether or not anyone one of you likes it I have to, and I do think about it for my children sake. 
People tell me I look great when they haven't seen me for awhile, its nice to hear, but in a way I feel bad, how do you let them know that yes I have lost 47 lbs in a short time, because I am sick.  Does it make them feel bad? Would it make you feel bad if you didn't know? I would feel bad if someone I knew was losing weight so fast because they were sick and not trying to lose it.  My point don't feel bad if you see me. I like the weight loss.  Just don't give me shit if I gain it back. Deal?
Anyway enough for today, just wanted to give an update and get that off my chest.  Hope everyone has a great New Year. Gosh I hope my 2011 goes WAY better than my 2010 did cause lets face it since Feb. 10 my world has be flipped upside down and now I am still trying to figure out my new normal. 
My pieces are still changing!
Chane

The Pieces Keep Changing

So I was asked to give an update and as I thought about it for a while, I wondered what should I write about?  At first I thought I should probably do a happy upbeat life is going great, I am thankful for everything blog. But then I realized that would be pretty much sorta a lie.  I say sorta a lie because I am thankful, I am thankful for family and friends that have been there for me this past week especially. I am thankful for the medicine my doctors give me in order to keep me going. And I am thankful for many many other things in my life which are far too many to mention.  I was also told by a wonderful friend of mine that I do not give myself enough credit so I will do that too.  I am doing pretty good in school right now.  Finals are next week and provided I do well on all of them I should get two A's and a B and if I am lucky I will pass my Math class. (its a pass/fail class) (Math is not my strong suit)  So some how through all my stresses I have managed to keep my grades up... GO ME!  Now that being said please stop reading now if you don't want to read my depressing, complaining and otherwise whining about my medical problems yet again b.s. Thanks.

However, life isn't so great right now, I haven't been feeling so hot.  The MALS has been acting up something awful, so much so that now I am on a steady diet of Compazine (an anti nausea med). Which by the way happens to be my new favorite drug of choice. FYI take my Compazine away from me and pretty sure there will be a hell of a fight on your hands! The reason for this new love of mine is the chronic pain has gotten much worse in my guts and I have started to puke now too. Oh the joy of being chronically ill. 
The FMD seems to be okay, I have had a couple of dizzy spells and headaches that are a bit weird but I chalk those up to mini mini TIA's and nothing to get into a fuss over.  There is not a damn thing the ER would do about them as they are over practically before they start anyway.  Oh I had pneumonia last week and still feel the lovely side affects from that, its been a joy too let me tell ya.
There are some mental health areas that need addressed too as you might have guessed due to all these things, as I am still not over the anger issues I have.  I suppose because not even a year into the diagnosis its just too dang hard to accept everything.  Is this normal is that normal.  It feels like I'm puzzle, but the pieces keep changing!  Not even the edges are edges anymore. Maybe that's the best way to describe how I feel. I told an instructor at school today that I think I am going crazy.  Ha maybe I am.

Anyway, I really hope everyone has a very Merry Christmas and Happy New Year, just in case I don't update before then.  Be safe, enjoy each other, and be kind!
Love,
Chane