Finally getting some answers!!
After more than 30 years Migraines, miscarriages, a stroke, frequent bouts of Clostridium Difficille and Doctors looking at me like I'm 'drug seeking,' I'm finally getting some long-awaited answers--I have Common Variable Immune Defficiency.
Its not good news, but it sure is a relief to know I'm not losiing my mind just THINKING I'm sick. It's validating knowing there really is something wrong and it's something they can fix. I've failed two fecal transplants for C. Diff (a nasty gut infection) which one doc said no one should do; I started to question my failing body up until late last week when my Immunlogist pieced it all together.
I was a healthy child and had been a relatively healthy young adult, with the exception of migraines which started in College. At 23, I came down with my first sinus infection, and they have continued to plague me despite many sinus surgeries.
When we decided to have children, our world began to unravel. We went through repeated miscarriages and 'unexplained' infertility. We even got to see our twins' hearbeats' at one doctor appointment, only to be devastated not to see them at the next.
Finally, God blessed us with three beautiful children; we adopted our first and managed to stay pregnant with our other two. But we had no idea, what was in store for us just a few short years later. The night of my daughter's 9th birthday, I had a massive Aneurysm and stroke and nearly died. My Neurosurgeon said he had never operated on someone so close to death who actually lived.
I had to relearn EVERYTHING...how to swallow, walk, talk...literally everything. I, or should I say we, because my husband has been such an incredible man throughout this ordeal, made it through even stronger. My family and friends have been so incredible and instrumental in my healing and NONE of it would have been possible without my Lord and Savior, who I truly owe my life to.
I rehabbed at the world-renowned, Craig Hospital in Denver, Colorado...great hospital, but I hated it there. I was definitely a problem patient. They had alarms on my bed. They had me strapped in my wheelchair, and the day they removed my straps they had to put them right back because they caught me walking without assistance...I was a problem child. I finally got a day pass to go home and absolutely dreaded going back; it was like going to jail. I hated it. But I did get better. I can walk, talk, drive and only have minor cognitive impairments. I'm even working again all thanks to Craig Hospial. They did a great job.
Since that fateful day when I had my Aneurysm, I have developed allergies to most narcotics, have had frequent Urinary Tract Infections, have been unable to sleep more than a few hours a night, had Clostridium Difficile or C. Diff more than a dozen times (hospitalized for three of those times), and various other ailments. I attributed all of this to the aftermath of the stroke. My address book is full of doctors...all specialists. I'm Doctored out: if I get a UTI, my Urolgynacologist puts me on antibiotics, but if I'm on antibiotics my I'm likely to get C. Diff. So do I call my Infectious Disease Doc, Immunologist, or Primary Care, or just do nothing because I'm really sick of Doctors? That's when my dear husband steps in and listens to me rant, talks to the mean nurse on the phone one just lets me cry on his shoulder.
Little did I know, all of these symptoms are common of people suffering from CVID. I'm so excited that I don't have to live like this anymore. I was just resigned to the fact that this was my life now and there was nothing that could be done. I now feel like I have a new lease on life. The infusions are going to be so worth it.
I'm waiting on Insurance to go through before I start my infusions. I'm so excited...I asked my Immunologist when he thinks I'll be able to have a fecal transplant so I don't keep getting C. Diff. His answer astounded me. He said I may never get it again. Wow!
I get teary thinking about it...Its a miracle!
Its not good news, but it sure is a relief to know I'm not losiing my mind just THINKING I'm sick. It's validating knowing there really is something wrong and it's something they can fix. I've failed two fecal transplants for C. Diff (a nasty gut infection) which one doc said no one should do; I started to question my failing body up until late last week when my Immunlogist pieced it all together.
I was a healthy child and had been a relatively healthy young adult, with the exception of migraines which started in College. At 23, I came down with my first sinus infection, and they have continued to plague me despite many sinus surgeries.
When we decided to have children, our world began to unravel. We went through repeated miscarriages and 'unexplained' infertility. We even got to see our twins' hearbeats' at one doctor appointment, only to be devastated not to see them at the next.
Finally, God blessed us with three beautiful children; we adopted our first and managed to stay pregnant with our other two. But we had no idea, what was in store for us just a few short years later. The night of my daughter's 9th birthday, I had a massive Aneurysm and stroke and nearly died. My Neurosurgeon said he had never operated on someone so close to death who actually lived.
I had to relearn EVERYTHING...how to swallow, walk, talk...literally everything. I, or should I say we, because my husband has been such an incredible man throughout this ordeal, made it through even stronger. My family and friends have been so incredible and instrumental in my healing and NONE of it would have been possible without my Lord and Savior, who I truly owe my life to.
I rehabbed at the world-renowned, Craig Hospital in Denver, Colorado...great hospital, but I hated it there. I was definitely a problem patient. They had alarms on my bed. They had me strapped in my wheelchair, and the day they removed my straps they had to put them right back because they caught me walking without assistance...I was a problem child. I finally got a day pass to go home and absolutely dreaded going back; it was like going to jail. I hated it. But I did get better. I can walk, talk, drive and only have minor cognitive impairments. I'm even working again all thanks to Craig Hospial. They did a great job.
Since that fateful day when I had my Aneurysm, I have developed allergies to most narcotics, have had frequent Urinary Tract Infections, have been unable to sleep more than a few hours a night, had Clostridium Difficile or C. Diff more than a dozen times (hospitalized for three of those times), and various other ailments. I attributed all of this to the aftermath of the stroke. My address book is full of doctors...all specialists. I'm Doctored out: if I get a UTI, my Urolgynacologist puts me on antibiotics, but if I'm on antibiotics my I'm likely to get C. Diff. So do I call my Infectious Disease Doc, Immunologist, or Primary Care, or just do nothing because I'm really sick of Doctors? That's when my dear husband steps in and listens to me rant, talks to the mean nurse on the phone one just lets me cry on his shoulder.
Little did I know, all of these symptoms are common of people suffering from CVID. I'm so excited that I don't have to live like this anymore. I was just resigned to the fact that this was my life now and there was nothing that could be done. I now feel like I have a new lease on life. The infusions are going to be so worth it.
I'm waiting on Insurance to go through before I start my infusions. I'm so excited...I asked my Immunologist when he thinks I'll be able to have a fecal transplant so I don't keep getting C. Diff. His answer astounded me. He said I may never get it again. Wow!
I get teary thinking about it...Its a miracle!
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