Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
I went away when I needed you most it seemed!
Most days I couldn't get to the computer.
I have a lot of updates but I'm giving the super duper short versions.
I figured out a big cause of my pain and nausea I was having in my abdomen. I had a huge rock in my gall bladder so they took that out.
Things in my life have started to become a little whacky. I haven't realized that for the past 8 months my anti seizure meds have made me some kind of bi polar monster who can't even understand what she's doing. I was having suicidal thoughts and I am one of the most positive people I know! So I'm working on weaning off of those. They weren't working anyway. I was still seizing. Plus I think they're a reason why I'm STILL nauseous. My boyfriend is ending our relationship. He thinks I'm now too emotionally heavy with "psychotic episodes" and won't give me another chance to prove to him that was not me.
And last but not least, I went to the ER a couple of days ago to find out I strained my back and caused a lot of stress on my kidney cysts. (I had been in excruciating pain since Monday along with vomiting it was terrible.)
BUT!!!
I am feeling like I'm on the road to recovery. If I lose him, I lose him. Maybe there will be others. Maybe not.
I want my Christmas to be awesome.
No one cares that I couldn't buy anyone anything.
It's all about family, food and fun tomorrow.
I hope you all have a wonderful holiday too!
I'm glad to be back!
Most days I couldn't get to the computer.
I have a lot of updates but I'm giving the super duper short versions.
I figured out a big cause of my pain and nausea I was having in my abdomen. I had a huge rock in my gall bladder so they took that out.
Things in my life have started to become a little whacky. I haven't realized that for the past 8 months my anti seizure meds have made me some kind of bi polar monster who can't even understand what she's doing. I was having suicidal thoughts and I am one of the most positive people I know! So I'm working on weaning off of those. They weren't working anyway. I was still seizing. Plus I think they're a reason why I'm STILL nauseous. My boyfriend is ending our relationship. He thinks I'm now too emotionally heavy with "psychotic episodes" and won't give me another chance to prove to him that was not me.
And last but not least, I went to the ER a couple of days ago to find out I strained my back and caused a lot of stress on my kidney cysts. (I had been in excruciating pain since Monday along with vomiting it was terrible.)
BUT!!!
I am feeling like I'm on the road to recovery. If I lose him, I lose him. Maybe there will be others. Maybe not.
I want my Christmas to be awesome.
No one cares that I couldn't buy anyone anything.
It's all about family, food and fun tomorrow.
I hope you all have a wonderful holiday too!
I'm glad to be back!
Merry Christmas!
Welcome back! Sounds like you've been through quite an ordeal these past few months! Those anti-epileptics are so strong (and can be a cause of gallstones and, if Topomax, kidney stones as well) and all too few neurologists understand how they interact, believe their patients when they explain what reactions they're having (suicidal ideation is a key sign of too much medication, period; it the black box warning on all the medications!), and just want to pile another medication or increase your dose every time you have a seizure (by no means the solution). We won't even talk about renal dosing (I have a close friend with epilepsy and PKD whose now post-transplant and is doing great on the transplant side, but having increasing problems on the epilepsy side and a changed seizure pattern).
As for your former BF, I'm with Atheophilus; his response may well be a blessing is disguise. You should never have to prove yourself; you are who you are and a boyfriend or spouse should be there to support you, not judge you, especially when you have a bonafide medical problem.
Congratulations for taking back control of your health; it's the best Christmas gift you could give to yourself! And who knows, by tapering down/off some of those epilepsy medications, your seizures may well self-limit themselves naturally (it's quite possible for the body to seize due to overmedication as well as undermedication; I've learned quite a lot about epilespy in the past few years). I'm just sorry it took such upheaval in your life.
Take good care of yourself and have a wonderful Christmas and a very happy, healty New Year!
Love and hugs,
Ruth