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

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

A totally random and much lighter post!

Fish Killer: A Confessional

          Approximately nine or ten years ago on a warm Sunday afternoon, a tragedy occurred.  This is the story of the one I called "Mr. Fish."  He was a beautiful, vibrant, yellow guppy who unfortunately met an untimely death.  His death was the result of a murderous tank-cleaning rampage.  Here is my confession: 

          I had purchased Mr. Fish from a pet store in Apple Valley, Minnesota.  I had him for only two short months before I murdered him.  Along with purchasing Mr. Fish, I had unknowingly purchased the weapon used to end Mr. Fish's very existence.  Its sleek packaging disguised it as a "rock algae cleaner" that is supposedly safe to use while your fish are still in the tank.  I should sue for false advertisement (I wonder if the statute of limitations applies to murdered fish). 

          This is hard for me…but on that Sunday afternoon, the tank needed cleaning.  I took the torture device from its package and placed it in the tank with Mr. Fish.  Things were going along fine…for about a minute.  Then…In a homicidal fish rage, ok, not homicidal, Mr. Fish swam too close to the vacuumess fish killing device.  He was brutally sucked into the vacuum.  I immediately squeezed him back out of the vacuum, but it was too late!  He floated…in the wrong direction. 

          I immediately attempted to perform fishie mouth-to-mouth (ok not really, but I thought about it).  But it was too late for poor Mr. Fish.  A mere five seconds in the vacuum had robbed my treasured yellow guppy of his life.  I feel as though I have committed fish-slaughter in the second degree.  I should be in jail…or at least on probation.  No debt that I can pay to society can ever bring my Mr. Fish back.  I deserve to be punished for this injustice.  It should be a state law that no one who has ever sucked up Mr. Fish's in a vacuum shall ever be allowed to own a Mr. Fish again! 

          I also must confess that before Mr. Fish, I had Fred and Barney.  Mr. Fish was the replacement for these poor lost souls.  They probably died from a dirty tank. 

          As of today, I still do not own a guppy.  However, I have graduated to a 46 gallon tank, and I have lost fish, but I have not murdered any of them I promise. Any deaths have either been of natural causes, disease or humane euthanasia done by my significant other (I make her do it now). I clean the tank VERY carefully and use EXTREME caution (and unusually have adult supervision) to avoid any mishaps.  

   

           So my name is Chane and I am a fish murderess.  Ok well I was a fish murderess, now I'm not one so much anymore.

          You must know I told this story out of shear guilt of losing this particular fish, he was gorgeous, and I was thrilled at having my first tank.  I was distraught over killing this fish at the time and as you can tell, ten years later, I have never forgotten about that damn fish.  I hope you enjoyed my story.

Frustration and Anger

It must be not only be the onset of winter, but also the reality of my "new" normal that has sent me into a tail spin of frustration and anger this week.  I also suppose it could have to do with the fact that I have had migraines almost everyday, I have had lots of homework that I have not gotten caught up with. Missed assignments that I will not get points for and some minor slipping grades at school.  Now you must know for me getting a B in psychology is a big deal, this is the field I want to go into! And my grade keeps slipping further and further from the A I once had.  And frankly its pissing me off something fierce.  I missed points again today because of my lack of concentration, fatigue and general overall lack of memory lately.  I felt like such a dumb ass, and yet I didn't today because I cried in class, here I had missed 2 days of lecture notes so I was clueless on what was going on, and couldn't do the stupid in class activities and there for I lost 10 points.  This may not seem like a lot but in this class 10 points is trust me.
Anyway, THIS is unacceptable and totally out of my control at this point and I hate it!  And its all because of a disease called FMD.  Someone I love said to me one day recently "don't become this disease Chane" or "don't let this disease become you" something to that effect, shocking I can't remember the exact quote.  I do however remember replying "I won't", but as I sit here today stewing in my anger, I am thinking about that wondering about how can I not be my disease just a little bit?  Its inside me isn't it?  It affects me doesn't it?  It gets to control parts of my life doesn't it? It can kill me when it wants to can't it?  Sure I do get to make some choices, like life style changes that may and probable will prolong my life, but in the end wont this disease win anyway?  Now please this is not doomsday Chane writing here, I have NO desire not to fight for my life, I have way to much to live for, my children, my partner, my family and my friends.  But damn it I am angry and I am frustrated and I am scared.  Because I worry about all those things that I have to live for, if by chance this disease decides to take me sooner than later.

Comments and quick update

Okay, I think I fixed the problem with the comments.  I know a lot of you wanted to be able to post comments and were having trouble, but I re-did some settings and now you should be able to.  At least I hope so anyway. Let me know via facebook if you are still having trouble and I will keep working on it until I get it right.  BUT on that note thank you for trying I truly appreciate it.
Its been a week since my TIA, and I am feeling better, my leg is still sore from the damn angiogram.  Those things suck and for all my FMD sisters that have had to have them before me I am soooooo sorry for what you have gone through and for anyone non FMD brothers and sisters that have an angiogram, like my mama, I am sorry for you as well those things SUCK with a capitol SUCK.  My leg has pretty colors that I think I should have the paint people match some of colors in memory of this time I tell ya. Well not really I wanna for get this whole thing as guess what IT SUCKED.  Okay I've complained enough about that now.  I am still pretty tired, and the weakness on my left side is still there (sucky). I am thinking that I just may have to go through with the occupational therapy and what not. (double sucky) Otherwise, I'm fine, stressed about catching up with school from last week and getting back on track, which should be one of the least of my worries but I worked hard to get the grades I have and if I let them slip now that's a lot of money wasted if you ask me.  So I will just plug away trying to maintain status quo the best I can and take it one day at a time.
I wanted to give a special shout out to my BBFF and her family for helping us with the kids during my medical crisis last week.  Leanne for being there for me during all of this. My mom for taking care of me, my FMD sisters for being such great support and of course all of the rest of my family and friends that show me love and support during these down times.
Love you all!
Chane

Well that sucked!

 So, Sunday night my FMD decided to act up and I had a TIA.  I don't remember exactly all how it happened but I know I got a headache behind my left eye, my left arm went weak and weird, and thank gawd Leanne was there but I got pretty unsteady on my feet.  Well as it happened Leanne did say that my left side of my face did get kinda droopy especially my eye too. So with that I text my bbff and said I may need a ride to the hospital, and next thing I know she offered to take the kids and for once I didn't fight Leanne and went to the ER. 
  Once we got there I was still unsteady and they took me right back. I guess for once it was nice not to have to wait in the waiting room for 3-6 hours.  Anyway I guess my blood pressure was slightly elevated but not high which is good. But the next thing I know I was in a room, and they were putting in an IV and telling me I was going for a CT.  All I really remember is having to go to the bathroom and they wouldn't let me up, and I was mad. So I told them I would hold it until they would let me up and I did just that. They wanted to put a catheter in me... Hell and No is what I said to that! The other good thing was they gave me some shot to calm me down too I guess, I was pretty agitated about not being able to get up to go to the bathroom or anything else for that matter.  Next thing was an MRI/MRA and being admitted.  The rest is very fuzzy till the next late morning. 
  So on Monday I had an angiogram to determine if they could put stents in. All this time, I was told they couldn't do an angiogram and there was no possibility of stent or any other surgery because my dissection (on the right side) was too high up and it was too risky. And the left side was completed blocked and there was nothing they could do for that. Well. These new doctors think they know better. They wanted to do the angiogram to see how bad my carotids really are, but also to check on an area in my upper brain that had "slow blood flow." They didn't see any dissections in the upper brain on the MRI/MRA but they couldn't be sure.  And since they were in there doing this whole angiogram thing they asked Leanne to sign the consent form so they could do the part where they looked at my Celiac artery (the MALS) (they forgot to have me sign before they took me back).  Turns out I do have MALS and will have to face those decisions in the future as well.


  Finally today (Tuesday) I had a finally CT scan to check the blood flow (remember the top of the brain stuff) and everything looked good. So bottom line is I do not need a stent at this time, and they will only put stents in if it is a last resort and I have another TIA event like this last one. But the important thing here is they CAN do it if needed, whereas I was told before it was impossible.
  So now I am off to rest as I am beat up and tired.  Thank you for all the well wishes and thoughts and caring. And for those of you that didn't know before now please don't be offended that we didn't contact you personally its not personal its just hard to do for everyone.

Hurry up and wait....Grrr

  I wonder if nurses forget that patients have lives and families too?  So my appointment with Dr. Foley was today, and I get a call about 1pm saying can you come it early our computers are going to go down at 2.  I said sure but my appointment is at 3 does that mean I will have to wait for him until 3? Oh no, he will see you early... Yeah right, strike one Dr. Foley's nurse... I will not be coming in early next time no matter how nicely you ask ...Hurry up and wait is NOT my idea of a fun afternoon... So we sat waiting for over and hour and a half...  This is not good for someone with ADD like myself...FYI
Okay now that I have complained about that.  On to the juicy parts you all have been waiting for.  If you have never had your lipid-protein panel check, yet your doctor has told you your cholesterol is fine, he or she has probably lie to you (due to their lack of knowledge).  For years I have just been told to raise my good cholesterol and everything else is fine.  Not so says my new and I might add very HIGHLY trained and accredited Dr.  My risk for a cardiac event (heart attack)  by the time I am 60 is not only possible it is highly probable due to my insulin resistance and cholesterol.  At 37 years old I need to take medication, lose weight, and change my eating habits immediately to stem off this almost certain cloud of doom. Which of course I am going to do.  Who likes the thought of possibly dying around the age of 60?
I want all of my blog readers to either talk to their doctors about getting this test lipid protein test done or go to my doctor and have it done by him or her.  There is only one place in the country that does this test it is in North Carolina, and it takes 2 weeks to get the results back.  Please do not take the numbers your doctors give you for your cholesterol for gospel. 
So now as far as this Celiac artery business, along with Leanne and Dr. Foley we have decided that we need to check the GI route first instead of doing the risky angiogram and possible Celiac bypass if I do indeed have MALS(again its still probable but not confirmed).  And as far as the MALS unless the pain gets worse the weight loss is just helping with the cholesterol.  Do you get the same feeling I do, which is everything is a big ole catch 22 with me? And you should have seen him roll his eyes when I told him nobody would give me a colonoscopy, I assume that he has no issue with his facility poking this tube up my bung hole, I of course am just thrilled with this thought.  But hey at some point in my life I know my butt must be violated by the colon inspectors, might as well be now, geez whats one more test, Ive only had about 500 in less than a year. LOL
So this my loved ones is the news of the day. On you guessed it my lovely health saga.  Are you sick of it?  You know you guys could give a sister some feed back they have a comment section for a reason and only one person has used it thus far... speak up tell me if you would like me to continue or give more or less detail. Or just say hi and let me know your actually reading this...
Thanks for reading love to all. . night night time for me. Chane

A month later

  Well its been over a month and I have heard about my lack of updates, so for those of you that have said Chane I've been checking... This is for you...  And I want to say thank you, it means a lot to me that the people I love want to read my thoughts and keep on my happenings.
  Anyway, on the health front, I will say I have had more developments.  My newest doctor Dr. Foley (who I now see at Fairview Southdale) finally listened (when many other doctors of mine wouldn't) and scanned my abdomen area.  The CT that was done is highly suggestive of a syndrome called Median arcuate ligament syndrome or MALS for short. http://en.wikipedia.org/wiki/Median_arcuate_ligament_syndrome Try this link if you would like more info on this. I also had a lot of blood work done and actually have an appointment with Dr. Foley tomorrow (Friday) to find out the results.  Back to the MALS, my choices with this and plan(s) have been and are this, first I was asked to go in for an ultra sound to see if they could confirm the diagnosis.  Unfortunately they couldn't with the ultra sound... BIG bummer.  So now I have to decide if I want to wait awhile and have an angiogram (a catheter thing up my artery in my leg that shoots dye at my celiac to see if i really do have MALS). Or skip that all together, which is probably not going to be an option as MALS is rare and cause all kinds of bad stuff too.  But if I do get the angiogram and I have MALS I have to then be willing to get a celiac bypass surgery.  And to be quite honest I am scared as hell and don't really know what to do.
  In other health related news, Mayo clinic is all they are cracked up to be, they just wanna send you to every doctor under the sun.. And I wonder why when they run blood test and send you the results and you have several that are abnormal NOT one person or doctor bothers to call you to say hey, maybe we should follow up with you cause you got some issues... SO yeah... Pretty sure I'm not very happy with them or the bill I am going to receive or the fact that I have gotten ZERO I mean ZERO help from them about my disease. Yet I see Dr. Foley once and all of the sudden I find out why i have lost 33 lbs and all it took was a scan which  I begged Mayo to give me, the 4 times I went.  Park Nichollet... they pretty much told me they wont treat me anylonger, because I have too vascular issues.  So there goes history I built with them over the last 6 years.
  So besides being scared and a bit lost right now I am actually doing well.  We will just have to see how Friday goes.  But my new motto: one day at a time, but still planning for my future like always!

Love to you all
Thank you for all the birthday wishes it was a fabulous day
Chane

And the story continues

So as of today there are no clear cut answers to any of my disease related health issues (shocker).  But there are other health issues that have come up that are as of today unexplained (another shocker).  I have lots of stomach/abdomen issues which includes pain(lots and lots of pain), loss of appetite (which could be good cause with my meds, I have lost 26lbs in 4 months), over all discomfort, and the newest symptom it hurts to eat. This has gotten worse in the last month or two maybe even more now, I've been so up and down in the feel like crap department that I cant tell what day it is most of the time. Anyway it has taken me a lot of begging and whining to my Mayo clinic doctors and even my primary doctors to do something.  As of today my primary has me seeing a GI person on 9-14 and Mayo has me seeing a general surgeon on 9-21. Frankly who knows whats going on, one thinks its intestinal one thinks its a hernia? Leanne thinks its FMD related.  The only thing I think at this point is MAKE THE PAIN STOP! AND its really hard being your own advocate they should have a class for that at my college.  Oh Oh and on one of my lovely reports that got sent to my house (don't know why) there was some node thing found on my lung or in my lung cavity, that now I go in for a CT scan tomorrow to see if that's grown moved gone away, that my doctor decided not to tell me about back in May because "It wasn't concerning and I had enough stuff going on". MY luck cancer will be next... Kidding people... But GAWD forbid that did happen PARTY at my house cause I just cant even think about it right now and we would all just get sh!t face drunk then worry about what to do next! And all you friends out there that have never come to my house better get your a$$ over here cause I'm pretty sure I'd for once would need the support!

On a more pleasant but not necessarily happier note, school is good, lots of homework, in fact I should be doing it, instead of writing this blog but I didn't start this blog, just to make one little post now did I. I love 2 of my instructors, like one of them and totally can not STAND the last one... SHE IS EVIL, but more about her later if I can even stand to waste my time writing about her.

Have a stellar day all! Love ME

The being of my major health issues

  So, back in February '10 I started noticing some weird headaches that were not normal for me. And anyone who has headaches will tell you, when they are different its time to get them checked out. Well at first I did nothing, and then Superbowl Sunday I felt "droopy" on the left side of my face, I called Leanne over and asked her to take a look, she said that my eye was squinty and that it was kinda droopy. On top of all that I got very tired and went to bed it was about 7:30 pm or so.
  The next morning after that I decided with the different headaches the droopy thing and the excessive tiredness I had been having it just might be time to go in. So I did. Lucky for me I got a wonderful urgent care doctor who scheduled me for an MRI that very day and it was off for that I went.  The next morning I got a call saying they wanted an MRA that day for sure and with some demands from the doctor, next thing I know I'm in for an MRA (at the time I didn't know what an MRA was but basically it an MRI with contrast dye given through and IV).  Okay that test done, kinda thinking okay something must have been seen on the MRI if they wanted this test so I was a bit nervous but tried not to worry too much, but I honestly don't remember how I felt at the time.
  That Wednesday morning Leanne walks back in the house after taking the kids to daycare (she missed work for me, how sweet) and said she just wanted to be with me in case I got bad news... So maybe I was more nervous than I remember.  Well at about 8:30 or 9am the phone rings, it the doctor or nurse I don't remember, and the say we need you to come to the hospital as soon as possible to check in we found something in your MRA and we need to do further tests and whatnot... I was FREAKING OUT... I was out of my mind thinking is this a tumor, brain aneurysm or what the hell is going on... So I said to the nurse/doctor  okay can I go see my kid first and then come in and they said well we really need you to come as soon as possible we have a bed all ready for you... Holy cats their worried and I wanna see my kid, so I went and saw my son anyway just in case it was really bad. 
  So I go to the hospital and long story short 3 days later CT scans, blood work, doctors and all that jazz later. I am diagnosed with Fibromusclar Dysplasia or FMD for short.  Now you ask yourselves great what is it, well its a vascular disease that affect the major artery's of the body.  My FMD happens to be affecting my carotid arteries I have a block left carotid a partially blocked right carotid and a dissection in the right. (a dissection is a tearing in the wall of the artery) My disease can cause me to have a stroke or a brain aneurysm, it causes me to get tired easy, I have memory issues (as some of you already know) ((keep the jokes down)). The first options of treatment was to treat the dissection so for 6 months I was on Coumadin (blood thinners) but as of Wednesday 8-25-10 I was taken off as the dissection is no worse and no better. So honestly right now I don't know whats going to happen except I will be on a baby aspirin for life, and most likely MRI/MRA's every six months for life as well.
  Anyway, I will update more later but this is a good starting point I think.