An introduction, of sorts...

So I have been attempting to blog about losing weight (one of my main goals for the last FOREVER) but much of my weight loss goals and objectives have been derailed the last few years (you can check out my other blog HERE) so I have not been as prolific as I had planned...  I did not want to bog down my losing weight blog with all of the baggage of the other issue that has been the focus of my life....  so in the middle of the night last night I had an epiphany.

Heck, just start another blog - it's free, might help with some of the baggage and it will help me keep focused on "coping".  There is also the hope, front and center, that my sharing will help others either find care or not feel so alone out there...  So here goes nuthin' folks!

What's it about?

I have a chronic disease called Type III Hereditary Angioedema.  It's a mouthful, ain't it?  It's also rare, hard to diagnose, expensive to treat, hard to understand, time consuming, vague, expensive to treat...  oh, I said this already....   It can also, unfortunately, kill me if I have an attack that affects my lungs or throat and it goes untreated.  Sounds like fun, right?  Oh yeah, and did I mention the HEREDITARY part?


Why is the blog called Living the Swell Life?


When an HAE patient has an "episode" or an "attack" (there are a lot of buzz words), it's called a swell.    There is actually a chemical reaction in our bodies that cause something to increase in size.  A swell can occur in your extremities, abdomen, throat -anywhere....  I can just be sitting on the sofa, look down and my hand will be having a swell.  On any given day my abdomen can increase in girth by 4 inches or more outward -and yes, I have been asked if I am pregnant or if I have gained a lot of weight.  Sometimes the swell goes inward and it is not visible to anyone else, but I promise you this, I can feel it.  Sometimes the pain is very mild, just an awareness.  Sometimes, the pain is horrific and unmanageable and irrational.  Sometimes, the pain is somewhere in the middle.

How'd they figure it out?

For a long time (since high school) I suffered with horrible headaches, swollen stomach, vomiting episodes, inability to eat -and the symptoms increased as I got older.  Whenever I would have an episode, it would take me months to get back to "normal" just in time for it to hit again.  It took a particularly rough episode and a five day hospital stint on a morphine drip to have a doctor, who was on call and not my doctor, diagnose the disease.  They did massive blood work and it came back negative (type III doesn't show up in blood work).  They changed meds I was on and hoped that it was drug induced and that I would be fine.  And it looked like it worked for a while, too...

Over the next several months I did improve.  No more vomiting instances but still having the weird swollen belly, phantom abdominal pain, headaches, etc... Then, in April 2011, I woke up with the vomiting again and they did treatment called an FFP transfusion (fresh frozen plasma infusion).  Within a short time, all the symptoms abated and life was beautiful for a while longer.  But then more symptoms and episodes and doctors who will not give you any treatments...  This will no doubt be a subject of future rants....

I spent the next five months trying to get a doctor who could treat me, who knew what the disease even was... and then I got an amazing gift - a national convention of people who were like me.  There is an amazing organization called  HAEA and they got me an advocate who has been ever so patient with me and so ferocious in educating me that it is humbling - and then they had this convention.  World renowned researchers and labs and pharmaceutical companies and - well, its dizzying...  And it is EMPOWERING to know that I am not alone.

Part of the reason we struggled to find a diagnosis for me is that none of my parents or grandparents are living and I have very little family left that I am in contact with on either side.  But after working with the doctors for a while, memories of my mother and grandmother started seeping back in to my subconscious - those little "hindsight billboards" that suddenly hit you in the middle of the night about them....   We can't confirm, but the doctors and I believe the hereditary part comes from my mother's side...  And I watch my kids daily with the fear that I have passed it on to them.  Again, this will more likely be expanded on later...

 

Fast forward a few months and I now have an immunologist who has other patients (imagine that!  WIN!) and I am currently working on treatment alternatives to make my life as little about my disease and as much about LIVING as I can.  I keep a symptoms journal to help find triggers and watch for what experiences I have and to learn to cope with the symptoms.  I will share more about that another time...

So, that's a little brief introduction...  well, not so brief, but an introduction of sorts... Hope you find something to interest you and you will follow -and if you have any questions, post them -I am happy to try and answer or steer you to an answer.

Thanks for reading.