Breaking my Silence
Yes, I know that I posted yesterday, so this is not really breaking my silence, but I am posting today to let you all know where I have been and what I have been up to.
I have been struggling again. I gave something to God, and I keep taking it back.
I have a praise:
I have been ill for a while. I am talking years. I can remember symptoms going as far back as 1991, when I was pregnant with Moosey. However, I know that many of the symptoms I have had as long as I can remember. I have had Drs tell me there is nothing wrong, that it is all in my head. I have had them look at me like I was insane.
I went to a new Dr. I think I posted a little about him, in Reasons I do Not Trust Doctors. I believe I said I was not 100% sure about him, well, now I know. He is the real deal. He really does care, like he made me think he does in our first visit.
I have answers. I now know why I developed Mitral Valve Prolapse (MVP). I know why I bruise when Boog hits me with a rolled up sales flyer from a local grocery store (he hit me 3 weeks ago and I still have a bruise the size of a base ball on my leg). I know why, at times I do not get enough blood to my brain and I get dizzy and almost pass out. I know these things and more. I am so happy to have answers after all these years.
The cause of all this, and more is Antiphospholipid Syndrome (APS). That is a link to the best source of information I can find on APS, that is in layman’s terms. I have a great handout from my Dr, but it is written with a lot of medical terms that boggle my mind.
Side Note: Antiphospholipid Syndrome is also called Hughes Syndrome. I would prefer to call it Antiphospholipid Syndrome because I cannot pronounce Hughes properly. LOL! It is like Houston. I have to stop and think and make an effort for the “h” to have a sound. I normally pronounce it silently. Isn’t that crazy? I do not know why it is that way, it just is. Cracks me up, because it irritates my kids. Talking to Moosey’s new friend “So you just moved here from Uston?” Moosey: “MOM! Don’t say it that way.” LOL! I know I find humor in the oddest of places. Oddly, sometimes I pronounce humor correctly, and others I do not.
Anyway, I am struggling with the whole APS thing. You see, I am so happy to have answers. However not all questions are answered. This diagnosis actually answered more things that I had thought of. When I was reading the list of symptoms, I was like “WOW! I had not thought of what might be causing that in a while.” But there are still things out there…
But enough about the unanswered. I have sworn, again, to give this to God, and I want Him to keep it. I do not want to take it away from Him again. I am not even going to go into what could be down the road for me, with APS. If you would like to know more about it, please follow the link I provided above.
However, if any of you know anyone else that has been diagnosed with APS, please please please, let me know. Send them my way. I would love to talk to others. There is a forum associated with the website with the link, but I will not join it. You are not aloud to talk about your religious beliefs there. I could tell someone I was praying for them, but I could not thank Him for answered prayer. I could not share how God is my Shepard, and He will lead me through this time in my life.
I say time in my life, like it will have an end. It will not, there is not cure for APS. They are working on a cure, but you know how that goes. 
Maybe some day there will be one, but I am not holding my breath. There is a call for blood platelets for people with Lupus Anticoagulant APS, but my APS is caused by Anticardiolipin antibodies, so I cannot participate in that. 
I knew many of you were wondering where I was. I know that some of you knew where I was and knew I had my answers, but did not know how things were going, because I have been “hiding” again. Yep, another Jonah moment. 
I have WAY to many of those.
July 24th, 2007 at 10:58 am
you know Melissa maybe thats your ministry. to make a christian board about the illness to be able to minister to those who struggle with it. that would be great to do.
Its a shame you can’t talk about your religion. you know people are so concerned with ” being politicially correct.” no body will have the same point of view.
July 24th, 2007 at 11:05 am
I’ll pray that you will find a support group to help you with this. Like Katie, I believe that things happen for a reason. This may be your ministry.
August 7th, 2007 at 6:20 am
[...] because I still worry about it, but I cannot help but feel that there is more to this than just my APS. I know I should not worry, but I do it anyway, which only makes me worry more, when that [...]
August 9th, 2007 at 3:32 pm
[...] I am thankful for Having answers [...]
August 16th, 2007 at 1:15 pm
You are not alone with APS. I was diagnosed back in 2003.
When I 1½ year ago found the first homepage with a list of typical symptoms of APS, I was stunned over how much fits what I have experienced.
In the mid 70’s I got very strong migrane like headaches. That went on till I had a stroke in 1997. Since 1997 it has been gone most of the time.
I had for several years a “sleeping” foot. If I stood still too long my left foot got numb. In 2001 it shiftet to a strong burning pain.
My doctor send me to a local hospital so they could find out what troubled me. Took then over 18 months, the result was APS and the fact that my left leg was shut off for over 80 % of the normal blood supply.
In Aug 2004 I got that fixed, I had a balloon angioplasty and got a stent insertet in both my legs.
In Dec 2005 I was hospitalized to be examed for a heart attach. I had luck, there was not a problem with that. But thy did find a bloth clot in the atrium chamber in my heart. It is located from the vena cava inferior and to the trikuspidal valve, which is partly covered by the clot.
There is no cure for it. It is located so that the doctors do not dare to even try to remove it.
It gives me daily chestpain and a short breath.
At the moment I’m waiting to have my lungs examed and have a new test of the bloodsupply to my legs. The past 2 months the numb feeling in my left leg have returned….
So…. you are not alone with APS…..!
Best whises
Steen J.
Denmark
October 24th, 2007 at 9:35 pm
[...] are at 11 this week. Since that is only one point over positive, I am not considered to have Antiphospholipid Syndrome. Or at least not by him. He put me on blood pressure meds, to try to control the constricting of [...]