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

I've been thinking again. Oh NO!

Well this is a random thoughts and updates blog now isn't it? I have been thinking about this whole activism thing.  I am pretty sure that I am clueless on how to be an activist but I am pretty sure all you need is passion.  I have passion but what I think lack is energy.  Isn't that what it really takes to be an activist?  Now there are many things that I would like to actively go out and get the word out about but in my world right now that would be of course FMD and how this disease is affecting more people the previously thought.  A friend told me a couple of weeks ago about a man who I believe was 43 (may have been 47) died instantly FMD of the coronary arteries, and it caused a heart attack.  It was only found after his wife who pushed for a autopsy because he was so young. It was a rare form of FMD but no the less it was FMD and it killed this man it is sad and tragic!  This is scary people, this disease is killing people and its being missed because doctors don't know what the hell they are looking for, nor do they know what the hell they are looking at!  We need to get the word out, we need to be talking to the our doctors, we need to question them if we have high blood pressure (as this could be a warning sign of FMD in the renal arteries). We need to get the word out to our friends and family as too many MEN, WOMEN, AND CHILDREN are not getting the proper diagnosis and treatments and they could then suffer the same fate as this young 43 year old man did. 
As some of you already know, but many of you may not my paternal grandmother died at the age of 34, she passed from a brain aneurysm.  With my doctors and piecing together what family history I have, we have concluded that she too probably had FMD.  So there is the strong possibility of a genetic link as well, but then again I wonder a lot about this, considering how many people we are finding with this damn disease.
Anyway, maybe this is my way of being an activist by writing to all of you on my blog, because maybe just maybe some of you will tell someone that you love about this friend you have that has this shitty disease called Fibromuscular Dysplasia. And in turn they will talk to their doctor and another friend. 
But that's all for tonight,
Peace**Chane

The Value of Crying?

Went to occupational and speech therapy this week, and found out I need to go to occupational therapy for an hour for the next eight weeks.  'My tone in my head is nothing like how it reads on here, it is rather sarcastic and blah really.'  I am not even quite sure why (okay I do, but I really don't care to admit why), the strength in my left wrist and hand is nowhere near the "normal" range, according to the therapists scale book.  For example my right arm squeezeablity is at a 76 my left arm is at a 35, that is a -2 deficiency, which according to her and her book is not good. Also as I have been saying, my thought processes and memory functions are kind of messed up. Oh joy! We haven't gotten into how were going to work on that yet.
The question I most had lingering that the therapist was able to answer for me, that nobody else thus far had was, if TIA's left no lasting "damage"  how is it that I am having these problems with my left arm?  And her response was "if you have repeated TIA's in the same area (like the same spot is affected) then you can have lasting or permanent damage".  Well finally I know something, considering each TIA I have had has been in the exact same area.

My mood however has not improved much over the last few days-weeks, this could be due a number of factors. 1. its getting cold out, and being on what I like to call a medium level blood thinner (Plavix I think) I get cold easier. 2. I am not sleeping again, and I have yet to figure out the cause. 3. the holiday season tends to give me a case of the "blues" anyway 4. I think all the medicines I am on are making me kinda crazy 5. I need a break, but I am not even quite sure what that means.     Maybe I am just going a bit crazy in general with all the stress of everything going on and I can't seem to just take it one day at a time lately?  Even though I try so hard to do just that.   I am not one to cry, and lately I have been crying over the littlest things.  The truth is I hate crying, I hate people seeing me cry.  And I keep crying, I have almost cried in front of instructors at school, friends, my kids.  I did cry in front of one of my instructors, how embarrassing.  Who knows how many people have figured out I was crying while I have talked with them on the phone.  I want this crying shit to stop! I feel like I need to be stronger than this!    So my question for all my readers is what is the value of crying?  What does it do for you?  Do you ever feel weak when you cry?  Have you ever been told its not okay to cry?  Have you been given that "look" like what the hell are you crying about? If crying is okay then why don't we do it more often? Or why do we look the other way when we see people crying?   You don't have to answer in the comment section, but I really would like some feed back on this one cause I am struggling and I have argued with my partner over this one a lot, she believes crying is okay and very therapeutic. But as you may have guessed I disagree.  So please feel free to email me and  we can discuss it  connersmom32@yahoo.com
Thanks,
Chane

The headaches:

Having had headaches most if not all of my teen years and all of my adult life it doesn't come as a shock to me any longer.  What does come as a shock is that I can't get the right combination of medicines, or rescue medicine to finally go a day without one.  Can I get a collective GRRRRRR  Its been what just over 2 weeks since my TIA? And I have had a headache or a migraine everyday since. <<insert another grrrrr here>>> I know that my neurologist said I have to give the blood pressure medicine time to work, but I am getting impatient.  I guess impatience goes with the territory when having FMD, since there are more questions than answers with this disease.  What else does not come as a shock is having a headache everyday for so long (meaning having repeated heads for weeks on end), I have gone on like this before, not knowing any better.  But I now know better and that it is my FMD that causes my headaches.  And just a reminder in case your new to my blog or need a refresher FMD stands for Fibromuscular Dysplasia- a rare or rarely diagnosed non-inflamitory vascular disease for more information please visit this web site http://www.fmdsa.org/. 
So anyway the point, well the point is, I keep having these headaches, and in the past as annoying and miserable as they would make me, I could fight through them.  I am not having the same luck now.  Its ticking me off.  My focus isn't there, my fatigue is higher, my crabbyness level is off the charts and I feel like i need and IV drip line of caffeine.  Speaking of caffeine THEY wanna take away my RED BULL!  So now not only do I have to quit smoking, yes I know I should have already done this and its an evil horrible addiction, but on top of that they want  me to give up Red Bull too.  So I guess this blog goes with the one entitiled anger and frustration.  HOW IN THE HECK AM I SUPPOSED TO CHANGE ALL OF THIS STUFF AT ONCE?  Here is the list of things I need to do to hopefully survive FMD longer:
Quit smoking (I agree fully)
Lose 50lbs (okay but could I get credit for the 34 I've already lost to the other rare disease I have MALS)
Exercise more (fine cause chasing after 3 kids is never enough)
Eat right (okay doing that and I hardly eat due to the MALS again)
Lower stress (really some explain how this is possible after you come over and we have a nice long chat)
Okay now after you have read this list I must tell you I have been told NOT to do any strenous exercise that can raise my heart rate to high, no weight lifting, no softball, no skiing, no contact sports, nothing at all that could potentially cause me to strain my neck in anyway.  Guess I can walk and swim and golf in the middle of January in Minnesota sounds like a blast... NO NO I'm not negative at all really I'm not... Just bitter party of one.
  Finally I have no clue where I was going anymore on all of this so I think I will close by saying please feel free to book mark my blog in your favorites as I will not be posting it to my facebook wall every time I write any longer.  I think enough people now know I have a blog and I don't feel its necessary do it every time so considers this a heads up.  Secondly and MOST importantly MWVA got into the Pepsi Refresh Project so PLEASE please please please go vote everyday, we need this money for research and our support group! It only takes a minute and I would be ever so grateful! Oh and pass it on to your friends and your friends friends! Thank you  http://www.refresheverything.com/search/?q=Mwva
Love to all Peace! Chano