So in my last blog post I explained how I was pretty much told that I was going to be disabled for life, by one of the most prominent doctors in California. I had been seeing a doctor from UCLA and he had no idea how to help me, so he referred me to another doctor at USC, and that doctor said that my back was pretty much #$%@ed forever.
Between then and now a lot of things have happened, some good and some bad.
I had an appointment with my PCP (primary care physician, the kind of doctor you see for normal check ups) to go over everything I had gone through at USC. One of the first things she said, before wanting to follow instructions that I had been given from that doctor, she immediately stated she was going to force a second opinion from Dr. Herman from UCLA. She won't let them give up on me yet.
The USC doctor told me to pursue every problem I am suffering from in my back separately. The pain, the urinary issues, and the bowel issues. All of that Dr. Flom, my PCP, agreed would be a good idea to seek out, but she is still pressuring Dr. Herman- the spinal surgeon who already did surgery for me and gave me back limited walking- to see me again.
So I saw the urologist, and at first he was sort of understanding that I had narrowed nerve space at the level in my back where the nerves that control the bladder is... And they had me give a urine sample and did an ultrasound afterwards and found that my bladder was retaining a significant amount of urine, and that I had a nasty infection... which I hated to admit to them that I had had for weeks before coming to see them. I just hadn't been able to get to a doctor or clinic before that appointment, and was hoping it would clear up. "Any day now," I would think, but like three weeks passed... and right before seeing the doctor, I got a high fever over 100 degrees.
I got antibiotics from the urologist, and the fever didn't go down. Soon they were all done and my fever was still with me. So I again thought, "okay any day now..." And then nearly another week passed and I had another doctor's appointment with my PCP, Dr. Flom. So I was asked to pee again, and they took blood. That was on 12/2 Tuesday. Still sick... Got an entire gram, not milligrams, a gram of a strong antibiotic into my butt.... made it sore, but I began to feel better by Thursday. Then Friday I got a call on Friday that I needed to come into the clinic ASAP to get a catheter put in, a follie (used for long term, it just sits there and gathers urine often like in the hospital), like they wanted me in within the hour- totally serious.
After a couple phone calls I was able to get a friend to take me into my clinic to get me fitted with one, instead of having to go to the ER. My bladder failing to empty was causing me to be sick apparently. My PCP had consulted with the urologist and they wanted the catheter ASAP. So now I have a cord and a bag for my urine... wooo..... the only upside- I don't have to get up to go pee while playing WoW so much, lol. But, there was raised concern about my kidneys, possibly being damaged... which scares me. Mostly because my mother had full blown kidney failure when I was too young to remember and then she needed a transplant, and got a kidney from my father when I was 6.
Miserably Disabled?
So World of Warcraft is the biggest form of social interaction that I have, mostly because I am sick and these days I can't walk further than 20 or 30 feet without issues. My back issues have gotten so serious that I am nearly completely wheelchair bound, again, like I was before Dr. Herman saved me last year with spinal surgery, granting me the ability to walk again.
The guild that I am mainly in is... coarse at times to say the least. Within a couple days of mine first joining there was talk about penis sizes and if they really mattered or not, which the consensus was, that yes they did, bigger was better. So when I jokingly mentioned that they should consider marketing catheters to hardcore gamers, so they wouldn't have to go to the bathroom it was met with a lot of humor.
Some guy replied, it's called a soda bottle, another replied that it's really lazy that it only takes 2 minutes to use the restroom. But then suddenly I was being personally attacked by a newer member of the guild. Since the new expansion has come out, a lot of new people have joined the guild and are more active in it.
The person began to criticize me for making fun of people who really need catheters. That there were disabled people out there who actually needed them. I had also criticized that if you needed them so badly as to use them every time to pee, it seems like it'd be painful to use one every time, why not use a follie which just stays there... The ads for the reusable kind bug me like ouch, thoughts.
I was being accused of making light of serious medical conditions and saying that people who needed catheters were stupid for using the open one every pack, vs the follies. So then I was like, well... no I wasn't trying to do any of that, I have a catheter in, I was kidding earlier that the plus side was that I don't have to get up as much to go pee. But the person thought I was making up the entire thing.
Why would someone make that up? I am thinking...
Other friends in the guild began to back up my story that I had indeed joked around earlier about the catheter and less bathroom breaks. I also explained to the person that I was also disabled and not making light of disabled people, or making fun of them either, cause I am one. Nearly anyone who has been in the guild longer than a week is aware that I cannot really walk and I am disabled, and in a lot of pain on a near constant basis.
But this person seemed to still take this entire matter very personally even after I tried to drop it all after explaining and apologizing. They asked how could I be disabled and yet speak so care-free about being so? I asked them if they were disabled, and they said that they weren't, but they still knew that if in real life, I were really ailing from such severe issues, I could not possibly be SO happy.
I asked in return, should I be miserable about being disabled? I had been told a couple weeks ago that I would probably never get better, and so I've tried to come to terms with it. Instead of being depressed about not walking, hiking, snowboarding ever again, I've tried to figure out the things that I can still do with my life. I try to find the good and humor and the happiness, so yeah, I do take being disabled light-heartedly, because the other way to take it, with soul-crushing depression I already have tried, and it depressed me very much and has made me suicidal. Now these times were well over a year ago and more, but I don't want to relive that.
Having others in the guild back up that yeah indeed I am wheelchair bound... There is a photo of me from August on the guild site of me in one... I've spoken extensively about my conditions and I know a lot about my injuries of the back. So with a history of that, they, know that I am not faking, or at least I seem to know a lot. This seemed to piss the person off even more... Which I wasn't trying to do!
It seems often when people hear or see glimpses of my life that they feel bad or are surprised why I am so happy as I am, or so grateful as I am for what little good I have going on in my life, but that is exactly why I am so happy with the good. All of the bad makes the good so much the sweeter.
It's not even just right now in my life how it is right now, but all of the bad things that have befallen me in the past, too, that I am grateful for a bed, food, books, warmth, and people in my life who care about me.
On Thanksgiving I thought I was going to be alone. My best best friend was going out of town, so I had no ride to his family who'd invited me over with them, but the family I stay with insisted, well more commanded like I was one of their own kids, that dinner was at this time and I was to attend, lol. Every year they take a candle and go around the table and every person at the table says what they are thankful for. I've never been at a small enough Thanksgiving celebration that I've seen something like this, but as I heard the parents both say that they were happy that I was now living here with them, I wanted to cry because it meant so much to me.
Every since my mother died when I was 12, I lost my family, as shattered and poorly held together as I didn't realize it was. I've just wanted a home since then... When it got to be my turn to say what I was thankful for, I could have gone on for hours, but I said for this place, this food, for having food, and for having you all in my life now. It might just be that I rent a room from these people, but they have become closer to me than my own living blood-related family that still breathes. When I hear the youngest say, "Mandi, I love you," my heart melts and I bend down and hug her close. I'm the big sister to her that I'd wish my sister could have been to me. I'll make sure nothing bad ever happens to her, even after I leave this house...
My father finally made attempts to find out whether I was alive or on the street or what had become of me, and I let him find out, and then he half-heartedly said he was going to see me for Christmas! I say half-heartedly because as it drew closer it became less and less likely, despite him coming out to Southern California several times a year for business. Maybe I am also happy that I am relieved I don't have to go through the stress of seeing him?
So I've been very sick, and that's partially why it's taken so long to publish this post... I had a very high fever for a long time... Then I also got an early Christmas gift of Warlords of Draenor expansion of World of Warcraft, which I have been playing when I have been feeling up to it, hehehe... But then people kept asking me about the blog, I was surprised.
Maybe someone out there I can give hope to... Someone out there who has nothing to live for right now, but someday it might get easier. You might have food to eat every day one day. You might have kind people in your life one day, people that you might want to live for, even if it is a painful life, it is worth getting up in the morning and hurting really bad, to wander out into the living room to see a smiling little face full of giggles and happiness especially when you feel good enough to tickle some little feet. I'm mean, he he he... but, I don't tickle too much, and stop if she asks, so I'm not mean like my elder sister and father were to me.
Life surprises you.
