I've posted this elsewhere, I forgot to post here. Those of you who read it elsewhere can ignore this. It occurred to me that not everyone is privy to the other posting, and since some of you have been asking, I felt it was time to give you an update.
Here are some things.
Ok, here goes: As for how I am faring, I WAS doing well as far as getting better last week, then I had another episode that landed me back in the hospital (I've been there a few times now, beginning of April I had pneumonia & bronchial infection, back to work for a week and then back off work). Here is the story of what happened.
On Monday the 28 April, I ended up collapsing on the floor with a severe headache and pain/tingling on my left side. Initially I figured it was a migraine (which I am prone to) but it persisted beyond anything I was accustomed to. It felt like I was hit by lightning, and no matter what I did I couldn't get comfortable or lessen the pain. I had a friend drive me to the hospital. They ran some tests, among them a CT scan, and then 2 doctors attempted a lumbar puncture (Spinal tap). Neither was successful and ended up giving more pain than good - bruised, they kept hitting the spinal column, and poked me a bunch of times before I finally begged them to stop. I wanted to go home, they said if I went it was AMA, and then filled an IV with something to help me sleep. They kept me overnight until the head of the ER department could see me the next morning. She came in and managed to successfully do the procedure, I barely felt it. But the damage had been done. While the lumbar puncture came out clear (a good sign - they were concerned of aneurysm or possibly meningitis, they did a full run of testing on me) the fact of the matter is the botched attempts traumatized my body.
My family doctor wasn't sure at that point if it's the original issue, a third issue, or if I'm suffering from post botched lumbar trauma, but he is pretty adamant about me not going back until he says so. I'm supposed to and allowed to get up and out for a bit each day but I'm supposed to rest when I feel the pain surging (which it inevitably does after about 45 minutes of me sitting up and pretending I'm ok) and it's completely frustrating for me. He also figures since I'm only just recently recovering from pneumonia/bronchial infection, that my symptoms are taking longer to heal than they typically would. I'm only just now noticing the IV bruises going away, and they gave those to me several weeks ago so there you go.
I ended up back in the hospital the next night because I was still in pain. They hooked me up to toradol and then sent me home next morning, and then I threw up all the next two days and I couldn't keep anything down, not even water. I had to pee constantly which also contributed to the dehydrated feelings.
On the bright side I didn't/don't have an aneurysm which was the whole point in them sticking a giant needle up my back in the first place. I'm pretty mad at the hospital and my husband took pictures, counted about 7-9 holes where the first two doctors butchered me. He has half a mind to file a formal complaint.
I suffered from severe symptoms of lp trauma, including headache, vision disturbance, nausea, ear pain, and my left side was still in agony. When I saw my family doctor a few days later, after not being able to keep any food down or in, he said it was difficult to discern if I was still suffering from the initial symptoms or if it was still the lp stuff. He put me off any work or any thing for that matter, and suggested lots of bed rest.
So then on Mother's Day after taking my mom out for brunch (my first outing in 2 weeks) I got back to her house and basically threw it all up again. My left leg was killing me and my left arm and back were hurting and tingling. I took some advil and whatnot and instead of getting better, I started to feel worse. After a few hours I finally begged my husband to take me back to the hospital. The head of ER happened to be there again (this will have been my third visit now in 2 weeks) and she ran more tests. The end result is they still don't know what is wrong with me and she is going to work with my family doctor to get me a neurologist as soon as possible. She did some weird tests where she would touch various parts of my arms and legs with both blunt and pointy things, cold and hot things, and noted some loss of sensitivity on my left side. I couldn't discern between pokey and blunt with my eyes closed, nor cold & hot. She made me try to walk a straight line one foot after the other, and I was completely unbalanced. She is suggesting the possibility of MS, if not another neurological issue. I'd need an MRI for that, but it takes time to get one here. My family doctor up to this point has been entertaining the idea of inner ear issues, but this new information may blow that out of the water. I've since been feeling the numbness sort of taking its turns, my hands then my feet then my face for a while, and my back really really hurts. And I have to pee like, all the damn time. And my eyes get blurry and my balance is messed up. And the back of my head hurts. And sometimes my ears feel like they are full.
I'm just really tired and I'm tired of being tired. I'm doing my best to get better, I'm hoping the doctor will maybe entertain the idea of me coming back to work on shorter hours at first until I am 100%. Here's hoping. In the meantime I'm stuck with fuzzy thinking and a body that doesn't want to work the way I need it to.
It's now May 21 and it is cold outside. Last night I saw a few flakes of snow fall.
I'm going to see my family doctor again on Thursday, I'm hoping he will approve me going back to work for short hours at first, letting me build back up to my full hours. I have a feeling he is going to say no, but I am going to try anyway. Because frankly I am completely frustrated and I just want to be able to get up and go and do things and not be so tired and hurt. Really what I want is to see a specialist, see someone who is actually capable of telling me what is wrong. A diagnosis means at least they'll know how to fix me. I don't know. It's sort of like a marathon runner, and one day they break their leg. They want to keep getting back up on their leg and they can't. But the doctors don't know what's wrong with their leg, so they just pump them with pain killers and tell them to sit the hell down. But who's going to race? They need to get up and run, dammit!
I don't really expect anybody to understand what is going on, because I barely understand it myself. I don't expect anybody to care. I'm not the type that likes to milk being sick, I leave that for other people. I am the type that goes to work sick anyway, that schedules six events in the same day, that juggles the lives of 3 other people in a household and still manages to eke out a little time for me. I try not to think about what is happening to me, because frankly it is a little frightening. I don't like going numb for no reason, I don't like having shooting pains in my legs and arms, feeling like my back is going to break. I don't like feeling off-balance, feeling mentally fuzzy. I don't like feeling exhausted. I have never felt this way before and I don't like it. Sadly enough I'd rather go back to just having migraines, at least I could deal with it and carry on.
I think that's enough for now.