Chronic vs. Acute

About 2 weeks ago I had a colleague say to me "Well, at least you don't have cancer.  It's not that bad."

Absolutely, I agree.  At least I don't have cancer, or diabetes, or Lupus, or migraines, or any other disease.  But I do have Myasthenia Gravis, & this is a chronic disease.

So what is an acute disease?  Acute conditions are severe & sudden in onset.  E.g. a broken bone or asthma.  A chronic disease means that it is a long-term disease that can be controlled but not cured. This means it will never go away.
I will fight this disease for the rest of my life.  Every day is a battle that most people have no idea about.  There are days when it would be so much easier to just stay cuddled up in bed & not push myself to get up & go to work with a smile plastered onto my face.  There are days where I am sick of pretending all is fine & just want to throw in the towel.  When people don't understand or say that MG isn't that bad, I wish I could let them live my life for one day so they could see the truth & see how well they would cope.  See if they would manage walking up stairs when you have to physically lift your leg for every step; or if they could cope with taking over an hour to eat to ensure you don't choke on any of the food in your mouth; or to make it through a day without slurring your words & battling to get out what you need to say.  Would those people truly cope?  Would they cope with their neck flopping forward unexpectedly because you have been bent over the computer for too long?  A chronic disease is a terrible thing to live with - no matter what it is.  And it makes it even harder when people haven't heard about it & thus don't understand.

People have heard of cancer, diabetes, migraines etc & they seem to be a lot more understanding & patient with people suffering those illnesses.  When they don't know what you are talking about, or don't understand the disease then they assume it can't be that bad.

Please, before you judge us snowflakes, read up more about this disease; try to put yourself in our shoes & think how well you would cope with your life if the MG was dictating every step of it; & allow us to have our down/negative days.  I try so hard to be positive, but sometimes it just overwhelms me & I have my "all-fall-down" days.  Please, love me through these times & don't just give up on me.  Know that I will come out of it & I will continue to fight my Myasthenia Gravis & to try be positive every day.  It is not easy.  I don't cancel plans for fun or to mess you around.  I don't not talk to you at the party because I am a snob, but rather because I am having a bad day & cannot physically get my words out.

Please do not give up on us!  Love us no matter what, & encourage us.  We didn't ask to get sick, it has made use lose a piece of our true selves, & it surprised us too!  Sorry for the moan, but I am hurting right now like you cannot believe & I am still in shock at the lack of empathy displayed by some people.  As we were taught at our church, "Love All.  Serve All."

Thank you xxx

Fighting a new battle...

This is something that has been consuming my thoughts lately, & is the reason I have been battling to write something new for my blog for so long...

To all those people that mean so much to both Warren & myself.

I am sorry that this is the way we are letting a lot of you know, but we would like to let those around us know what we are going through. 
As you all know, Warren & I cannot wait to be parents but due my MG, years of medication & my botch up of an operation 4 years ago (when I ended up with septicemia & in a medically induced coma) this is a struggle. I recently went to the gynae for a full check up. It was not good news.

Unfortunately I have more cysts, my tubes look like they may be blocked again, I have endometriosis, my cervix is at an angle & I have very few eggs left. All of this is working against us. Dr Amod has told us that there is no chance of us falling pregnant naturally & our only option is IVF. 
Now this is where another problem comes in... We are going to see the fertility doctor in Durban, & they have advised us that IVF starts from R45,000 - per time. There are no guarantees that this could take, so we don't know how many we will need to go for. This is why we are attempting to fundraise in every way possible. 
There is also another aspect working against us - my health. I need to go back onto another medication (CellCept) soon, but once I am on it then we cannot have kids. It causes major birth defects & we are not willing to take that risk. So, time is of the essence. 

Please, if you have any amazing fundraising ideas, or know who we could maybe contact, we would really appreciate it. Please understand that we are emotional currently. We are still trying to process all of this & it has hit both of us very hard. It is certainly not an easy thing to hear, so if we pull back from society for a bit it is because are trying to cope with this situation. 

We would really appreciate all of your prayers, love & support during this terrifying (but still exciting) time. Thank you xxx