Tests and Treatments

Now that I've gotten over the emotional side of being in the hospital, I think I am ready to talk about the tests and treatments that the doctors tried. When we decided to go to the hospital, I was experiencing numbness in both legs, pain in both legs, a headache, and the queen of all symptoms, blindness in both eyes. The blindness made us both panic because optic neuritis usually occurs in just one eye and I've never had sudden, total vision loss like that. We tried to avoid the ER, but after consulting the on-call neurologist, it was clear that I needed urgent care. We headed to the hospital around 8 pm on Thursday, September 24 and I was seen immediately and admitted. I was not a fan of the initial neurologist that was coordinating my care, but it was clear that he consulted with my neurologist on treatment ideas and even though I would have loved to be left alone to rest, I was able to walk out of the hospital with total sight and use of my legs. The following procedures started when I was in the ER and continued until the day I was discharged.

Head CT – Although I told the ER doc that I had MS and didn't need a CT scan, he insisted that it was standard procedure and wise for my symptoms of headache and acute blindness. CT scans are quick, I didn't need contrast, and it showed nothing abnormal.

Corticosteroid infusions - Once again, the doctors insisted that I do a course of steroids. My first infusion happened the night I was admitted and I did a total of 5. Since I was already on stomach medication and insisted they monitor my heart rate after infusions, I didn't have a strong adverse reaction. Unfortunately, the doctor neglected to order a sleeping aid for after my infusion, so I spent the first night wide awake, blind, and in a strange situation. Not fun!

MRI - On Friday, I met the neurologist and he insisted that I have new scans of my brain and spine done WITH CONTRAST. I explained to him that I have had bad reactions to gadolinium contrast in the past and did not want to endure that again. He claimed that a high dose of IV benadryl would alleviate any adverse reactions that I might have and told me that he couldn't identify the cause of this exacerbation without the contrast. I agreed to the procedure and I regret it. I am allergic to gadolinium. I knew that before I let them inject me with it and I'm still itching because of it. Never again. Also, the scans didn't show anything new.

Lumbar Puncture - I don't remember if I had the LP on Friday or Saturday (I think it was Saturday), but this was my first introduction to Interventional Radiology. The doctor believed that my headache was being caused my increased pressure on my brain and the best way to test that was to check my cerebrospinal fluid. Basically, they numbed a spot on my back with Lidocaine, then stuck a thin needle in my back and collected spinal fluid. I was completely awake and laying on my stomach. It was so weird being able to feel the pressure and even feel a few drops of the fluid run down my back. After the procedure I had to lay flat on my back for 2 hours without moving. Unfortunately, there were complications from the procedure and I was left with severe back spasms and a low-pressure headache (more on that later).

Visual Evoked Potential - I can't remember what day this test was performed, but I know it was after Sunday. On Sunday, I woke up and was completely blind again (there was some improvement on Friday and Saturday), so doing a test that required me to look at a screen seemed idiotic. I was not at all surprised to hear that my vision was markedly worse than the first time I did a VEP during my June/July hospitalization. For better or worse, it was these results that convinced the doctor to send me to an ophthalmologist and try more aggressive treatments.

Rehab Therapists - On Monday, I was visited and evaluated by physical therapy, occupational therapy, and speech therapy. Unfortunately, I was too sick to participate in any of the evaluations, so they were postponed. Someone from each department came by each day, but I was very sick until Friday night and never actually had any full evaluations. I could have stayed until another day to be cleared by them, but it was unnecessary.

Ophthalmologist Evaluation - The first attempt for me to see the Ophthalmologist was Tuesday morning. The office was just across the street and I was taken over in a wheelchair by the charge nurse. I was not evaluated on Monday because as soon as I got to the office, I started puking and literally begged to lay down on the floor. The nurse knew she couldn't leave me like that and wheeled me right back to the room, where I continued to puke all over the bed and myself. The next day wasn't much better. They gave me a shot of some anti-nausea medication and put me on a gurney with a pair of paramedics. Once again, I made it to the office just in time to puke in the trash can (and all over myself, but was too sick to care), but this time they convinced me to stay and be evaluated. I was there for no longer than 10 minutes. I was first examined by a tech and then the doctor came in. The doctor was a jerk! Although I had tubes coming out of my neck, obviously couldn't sit up straight from the back spasms, and hold my head up for extended periods without vomiting, he thought it was smart to violently grab my head and jerk it to where he wanted it. Unfortunately for him, my reflexes were very much intact and I simultaneously screamed ouch and kicked him in the shin. The results of his examination were painfully obvious: I couldn't see due to inflammation in the optic nerve. Duh!

Plasmapheresis – On Monday afternoon, the doctor came in and told me he was sending me for a more aggressive treatment that should help alleviate my symptoms. It was around this time that he began talking about other conditions and assured me that plasmapheresis was the best treatment for any of them. In order to do this, they needed to insert a catheter into my neck. This was done on Tuesday in Interventional Radiology (my new friends). Once again, I laid on the table wide awake, the doctor numbed the area with Lidocaine, then cut into an artery in my neck and inserted a long tube. Attached to the tube were several ports that allowed medicine to be inserted or blood extracted. Getting the catheter was one of the worse parts of the stay. Not only was I awake and able to feel my blood running across my neck, but I could feel the tube in the artery. I also needed to keep it in for a week and built up a lot of anxiety around getting an infection or ripping the catheter out. Luckily, I had no complications and the hole is pretty much closed up. The first session of plasmapheresis also happened on Tuesday (second was Thursday, and third on Monday). The procedure was done in ICU and lasted about 3 hours. During that time, they remove all the blood from the body, send it through a centrifuge, remove plasma, mix the plasma-free blood with albumin, and then put it back into the body. It is completely painless. However, in order to stop the blood from clotting in the machine they mix it with citrate. Then, the citrate binds with calcium and the person can become calcium deficient. This happened to me each time. The feeling is really hard to describe. You start out with tingling on your face, then you feel feverish, then antsy, and then your heart rate drops. The treatment is a calcium injection (or 2) right into the catheter and relief is immediate. During my final treatment, we waited a little too long to start the calcium and the nurse panicked a little. Of course, my doctor walks in at that moment and questioned whether to go through with the discharge, but waited around for the calcium injections and saw that I was so much better and ready to go home. I don't know whether plasmapheresis worked or not. I didn't feel any different after the treatment versus before, and the discomfort of the catheter would make me question doing it again.

Cerebral Angiogram - When the doctor came to see me on Thursday afternoon (October 1), my most prominent complaint was headache. Since the moment I woke up on Sunday morning, I was experiencing the most excruciating headache that I have ever felt. Honestly, it was the worst pain imaginable. It hurt no matter what I did and any movement resulted in vomiting. By Wednesday, I couldn't sit up long enough to eat, I was using a bed pan, and even though it didn't relieve all of the pain, the headache was significantly better when I was laying flat and motionless. Every day I tried to explain the pain to the doctor, but he was much more concerned with my blindness and numbness in my legs. I even told him that I didn't care if I ever saw again, I could not live with the pain in my head. By Thursday, my eyesight was getting better, my legs were completely better, and I guess this was enough for him to start seeing my head pain as something that needed treatment stronger than Tylenol and Benadryl (he also tried a "cocktail" that involved Valium and an IV anti-inflammatory drug, but there was no relief). He ordered a cerebral angiogram to evaluate for aneurysms and vasculitis. This was done on Friday afternoon in Interventional Radiology and involved the doctor threading a catheter through the femoral artery in my groin up to my neck, then injecting dye, and doing scans to see how the dye travels through the veins in my head. Once again I was wide awake, but they numb the area with Lidocaine and they even gave me pain medication (the first time my head pain was adequately treated - I love IR). This test wasn't too bad, except the dye burned when it was injected. I could literally feel it going up my neck and across my head, but it went away quickly and had no lasting effects. They pull out the catheter, seal the hole (which required constant pressure for 20 minutes) with an Angio-seal, and I lay flat on my back for two hours. I do not know the results of the cerebral angiogram.

Blood Patch - The doctor's other idea regarding my headache was that it was possibly a low-pressure headache caused by the lumbar puncture. He believed that after the LP, the hole never closed up and my spine continued to drip fluid. This caused my brain to have insufficient fluid level surrounding it and when I sat up, my brain would "clunk" down against my skull and cause this headache. He believed this is why my pain was much more severe when I moved my head or set up even a little bit. The only difference from the classic low-pressure headache is that I still had pain when I was completely still and horizontal. However, my condition changed so dramatically when I sat up that he believed getting a blood patch was necessary. Now, there was a lot of drama surrounding this procedure and I won't go into that, but suffice it to say that the possible benefits of the procedure outweighed the long list of risks, so I went forward with it. The procedure was done after the angiogram on Friday night and I think it was a success. The procedure is done in an operating room by an anesthesiologist and mine was incredibly nice, smart, and generous with the pain medication. Basically, I sat up on the gurney and leaned forward like I was getting a chair massage. The spot was numbed with Lidocaine, and the anesthesiologist injected blood taken from my arm (by a nurse working simultaneously) into the base of my spine in the area of the suspected hole. He continued to inject blood until I felt slight discomfort and then I had to lay on my back for another two hours. The belief is that the blood will naturally clot and block off the hole, while also pushing the spinal up into the head to restore pressure. When I was finally able to sit up again, I felt immediate relief. It felt so good to be able to eat and walk to the bathroom.

FFP infusion - When I woke up on Friday morning, I expected to go right down to IR for the angiogram, but I couldn't. Blood tests revealed that all the plasmapheresis and anticoagulants (given by the hospital to avoid blood clots in patients) had caused my blood to be too thin for the procedures. The worry was not just about excessive bleeding, but also that my blood wouldn't clot when injected into my spine. They would not clear me until my clotting rates were back to normal. The solution was several infusions of fresh frozen plasma (FFP) and a shot of vitamin K. FFP is a blood product and therefore carries the same risk as a blood transfusion, so there was lots of paperwork to sign and strict protocols around verifying the donor and recipient. The first two infusions where done through an IV in my hand and it hurt. The FFP is ice cold and completely chills your body as it goes into the vein. They also had to start a new IV because they needed to use a larger gauge and at that point my veins were angry and didn't want to be found. It took nearly an hour to get stuck, but the infusion was quick. My levels were then high enough for the angiogram and they did the last two FFP infusions while I was in recovery. Since I was on the surgical floor and being watched more closely, they did those infusions in my neck catheter and I didn't feel it as much. I was also filled with pain medication and slept through them. By the time I was finished letting my Angio-seal stick, the infusions were done and I was ready to do the blood patch.

I think that's everything other than the daily blood draws and continuation of my regular meds. The hospital that I use is in the same group as my doctors, so I can see all the results, but I have no idea what they mean. All I know is that every day they took several vials of blood and tested for all kinds of things. I'm hoping that my appointments next week will offer more insight into everything that happened or at least rule out a few things. We'll see.

Also, I just read back through my updates on Facebook to see if I missed anything and I just want to say thank you again for all the love. I really can't tell you how much all the support and love meant to me.

The truth.

I know I promised a detailed post about all the tests and procedures that I endured during my last hospital stay, but I don’t know when or if it will happen. Even writing this has meant lots of deleting and restarting and giving up. And I know why. There are a few things about my stay at the hospital that I have been afraid of admitting and no matter how hard I try, I am incapable of composing anything post-worthy that excludes these facts. So, if I ever want to update this blog again, I need to be upfront and honest about everything that’s happening.

1. The doctors think there is something else going on. Not that I don’t have multiple sclerosis, but that I have something AND multiple sclerosis. Most of the testing was done to find this mystery condition (including lupus and vasculitis), but with everything happening no one bothered to tell me what they found, if anything. To make matters worse, last week I got a call from the office of a rheumatologist who couldn’t tell me anything other than “your neurologist wants you to see us about a possible autoimmune condition.” Um, I already have an autoimmune condition, is this about a new one? Silence.
2. I have had an excruciating headache for almost a month. It’s not getting better and not responding to any treatment. The worst part of this headache is that it has spikes and will suddenly become nearly unbearable. This means that even if I wake up feeling good, at any moment I could be struck with sharp, stabbing pains that last the rest of the day. It also means that I am spending more time in bed and things like eating, getting dressed, and doing chores just aren’t happening.
3. At this time, I am not treating my MS. While in the hospital, I spent a lot of time thinking about the progression of my illness and how much sicker I’ve been since I started treatments. I might be wrong, but I think all the drugs and vitamins may have something to do with how I feel. While at the hospital, they suggested I may be interferon-intolerant and stopped the Betaseron. When I got home, I stopped everything else. I can’t say it’s the best decision, but until I have more answers about what’s going on, I’ll endure my symptoms.
4. I’m more afraid than I have ever been before. I think this is the main reason that I keep putting off updating the blog. I can’t write about my time at the hospital or my life right now and hide the fact that I am terrified of what my life is becoming. Between the pain, fatigue, and sudden acute symptoms (blindness, inability to walk), I’m starting to question the plausibility of living a “normal” life. Seriously, how can I work like this? I also questioned whether I would make it home. I’m not trying to sound defeated or be overly dramatic, it’s just how I felt.

{exhale} When I got my diagnosis and started this blog, I never expected things to be so difficult so quickly, but they are. I’d be lying if I said that I’m handling things well, but I’m not. I have no idea what is going on with my body, I’m afraid of it getting worse, and my quality of life is pretty much gone. It’s not supposed to be like this and having the doctors agree with me but not offer answers isn’t comforting at all. I see the rheumatologist next Monday and my neurologist next Tuesday, hopefully I’ll know more then.

It's so good to be home.

I'm sorry that I didn't think to update sooner, but I was discharged from the hospital yesterday. I'm doing pretty well. I still have a headache, but my eyesight and legs are back to normal. Right now I'm just trying to rest and get back to 100%. In the next day or so I'll post a more detailed account of my stay. I did a lot of test and procedures that I can't wait to talk about.

I also want to extend my sincerest thanks for all the prayers, calls, emails, messages, texts, thoughts, and good energy sent my way. It can't begin to tell you what a huge role it played in my recovery.

In the Hospital again

Hi Folks,

This is Nilaja. Chris wanted me to let y'all know that she is back in the hospital. Around 7:30pm last night she called me into the bedroom and said "I can't see." Her vision has completely left her. The neuro on call told her to go to the emergency room and she was admitted into the hospital around 12:30ish.

Right now we don't know how long she's going to be in the hospital. They are running a lot of test and we'll know in a day or two the results and the course of treatment.

Chris is holding up well especially when they give her pain medication and she can sleep. Feel free to call her on her cellphone (text messages and emails are nice, but she can't see them). She has the cellphone with her at the hospital.

My Day at the Hospital

Today I went to the hospital to do my gastric emptying study. It was a pretty easy test, but I would prefer never having to do that again. My test was scheduled for 8:30 am and as usual, I arrived early. I had to wait for the secretary to come back to her desk so I could get signed in, but I didn't mind because I brought my iPod. The sign in process was really quick and they took me right back to start the first part of the test.

The way that it works is they have you eat a food that has a drop of radioactive isotope stirred in. You can't see the "dye," but they can use a special camera-like (in that it takes pictures) device to detect where the dye-stained food is in your system. Pictures are taken at various intervals to see where the food is and according to those results they can estimate the rate that your stomach empties. Obviously, a doctor would explain this different and give you more accurate details, this is just my explanation of the test as it happened to me.

Anyway, once they took me back they gave me two options, oatmeal or eggs. I happen to hate both, oatmeal for the texture and eggs for the smell, taste, and texture. I've been known to eat both, but with lots of seasonings and add-ins. Since I like oatmeal a little more and it doesn't have to be chewed, I chose oatmeal. 30 seconds later, the tech came back and informed me they were out of oatmeal so he was preparing the egg. I said OK and figured it couldn't be too bad. I WAS WRONG. A moment later, I was presented with a paper cup with a spoon in it. When I looked into the cup I was greeted with very fragrant, piping hot scrambled eggs that were microwaved in the paper cup. That was the first time I gagged. I was then warned that I needed to chew them in order for the test to work and told to get started. Let me tell you folks, this was the most vile thing I've ever eaten. The only thing that could have made it worse would have been eating mysteriously soggy bread. Not bread artfully dunked in coffee or tea then consumed, but a piece of crust left found in the sink after you empty out the dishwater. The eggs were disgusting. But I ate them, because I had to eat them.

After ingesting the dye, the tech took a set of pictures. To do this, I laid down on a very narrow concave table and a large ring slide over my head down to my chest. A horizontal plate was lowered to just a few inches above my chest and I was told to be still. The tech took three 1-minute long shots of my stomach (two from the top and one from below) and then helped me up. These first shots were taken just before 9 am and I returned to have more pictures taken at 10:30 and 12:30. Then I was free to go.

Of all the tests and procedures I've had done in the past couple months, this was one of the easier ones. It really sucked to eat the eggs and all the waiting around worked my nerves, but it was non-invasive and fast. The tech said the results should be ready tomorrow, but I probably won't get that information until I see the gastro on Sept 14, unless there's something that warrants another call at home. Speaking of which, I haven't gotten the lab forms yet, but will probably go out to have that done as soon as I receive the form.

Revenge

I know I haven't written about the wedding or all the fun I'm having, but I have to tell you that my body has started to revolt. I had complete body cooperation until 9:30 pm on Sunday. Actually, my body was better than it had ever been! I danced non-stop for over an hour without an inkling of pain, numbness, tingling, dizziness, or lightheaded-ness. Once I did start to feel icky, it came on slowly and coincided with the party winding down. It was unbelieveable that I lasted as long as I did. I actually expected to be in the wheelchair after the party and in bed all day Monday, but I woke up with all my vision and no problem with my legs at all.

My symptoms remained relatively nonexistent until last night. I started having a lot of left shoulder/arm pain and weird left foot pain, that didn't respond to any of the OTC pain relievers that I tried. And then I woke up unable to bear weight on my left foot. I don't think it's MS-related, but it could be. I have no idea, but despite today being pretty low-key (we went to the movies) my pain levels are rising. I've actually already done my nighttime "doping" (my medley of pain pills plus a sleeping pill, so this may get really incoherent soon), but am still in agony. I think it's time to call a doctor. Ugh! I really hate calling my PCP and I didn't want to spend this week doing anything medical, but I can't function with one side of my body sore and swollen.

Of course, the pain and the stress over the pain is starting to set off brain stuff. Useless.

And to top it all off, I got the summary of charges from the hospital today. I racked up nearly $68,000 in charges. I don't know what our portion of that will be (they haven't received information back from the insurance yet and we have decent coverage), but the thought of that has me completely freaked out. I'm trying to remain calm and ignore my inner voice which keeps saying, "no more visits to doctors, hospitals, medicine!" I hate that voice, it always pops up when the bills come in. This time I know it's ridiculous and I can't listen to it (even though it will make me more hesitant about future care). But it's there, it's stressing me out, and intensifying my guilt.

Still in the hospital

But hopefully not for long. I tried to get discharged last night after my last infusion but Dr. C wouldn't release me. I told her that I was walking more normally and my pain levels were down, but she didn't care. I was really bummed, but Dr. knows best. She wanted me to keep my mind open about rehab (there wasn't a bed for me yesterday and then they started having trouble with my insurance, so I was ready to give up on that possibility) and also remember that I was really sick when I came in here and just because I'm feeling better doesn't mean I'm well. On top of being just ready to go home, I was worried that I wouldn't get to sleep and another night of staring at the walls and curtains would drive me wild, but I slept soundly. I needed that. It's also helped me reconsider rehab and if they offer me a bed there I'm going to take it.

This was a really difficult decision for me. I really miss being at home, and having my things, and my routine, and sleeping next to my wife. I've never liked change and after 6 days of being in a foreign environment, I'm getting mighty antsy. But I'm gonna suck it up and do what's best for my body and my family. I can't shrug my shoulders this time, I need to get as close to 100% because it's not just me. Oy, I hate being an adult.

As far as my health is concerned, I'm doing a lot better. My leg pain is low, my stomach pain is manageable, and my strength is getting better. I can walk short distances unassisted and even went all the way down the hall yesterday without getting tired. My vision hasn't gotten back to 100%, but I'm pretty sure the haze is getting lighter. Phew. Things are getting better, I like that.

Yesterday, Last Night, This Morning

I'm so tired people. So very very tired. Yesterday at midnight, I was woken up so they could attach fluids to my IV. The plan was to have me met the gastroenterologist early and hopefully get set up to do an upper-endoscopy, so I had to fast starting at midnight. This isn't a problem since I am usually asleep by 10 pm. Setting up the fluids didn't take long and I went right back to sleep. Then four hours later, the nurses came in to take blood and get our vitals. This visit was definitely more intrusive than most visits, but I'm pretty sure I got back to sleep eventually. But not for long.

My next visit was from Angela the physical therapist at 8 am. I really like her and we work well together, but 8 am sucked. We worked together for 30 minutes and then I got up to do my sponge bath and put on fresh gowns. As soon as I was done, it was time to meet with the occupational therapist. This was the first time I'd met with her, so I had to go ove my history again and once again get chastised for the way I challenge myself on the treadmill. UGH, I WILL DO LESS. This woman was also vey concerned with me buying stuff like a commode, new chairs, a shower bench, a grabber, and a few other things. We'll see what happens there because I'm am so broke and trying not to think of the charges I'm racking up here. After she left, the chaos began.

I quickly met with a gastro who felt around my gut for a bit before agreeing that I needed the endoscopy. I thought I had a little time before that was going to happen, but the next thing I knew, I was being prepped for surgery and getting ushered into the basement. I was so tired and drifting off the whole time. At some point, I'd thought I'd quickly nodded off while they were setting me up, but I woke up and they were down. Apparently I didn't go to sleep when I thought I'd had because I was still talking to them and was alert when I swallowed the camera. I was also alert enough to warm him that I'm very sensitive to medication, so when he went to put me to sleep, he didn't need to put in a lot. This happened just before they sprayed my throat, I swallowed the camera, and then he put me to sleep.

As soon as they took me to recovery, I was told that my new neuro Dr. Cooper had ordered an Evoked Potential test for my eyes and they were taking me there once my vitals stabilized. That pissed me off. I didn't know what the test was, I was exhausted, and I like to take an active role in my healthcare. I hate that Dr. C is much more take charge and doesn't think to discuss things with me or even tell me about them. Yes, you are a doctor, but this is my body and I want to know what you're doing to it. Luckily, the test is completely benign and is commonly down when diagnosing MS. It took about an hour total and then I was back to bed.

And suprise, suprise, my previous roommate was gone. That made me a little sad, but my nurse found out that she was safely in a different area of the hospital so I could relax. I pulled back the divider curtain, ordered some solid food, and settled in to having a great evening. Not so fast, my paradise was quickly lost when they wheeled in a rather loud woman with rectal bleeding. This I know becuase it was being shouted on the other side of the curtain. I should have known that it would only get louder and more obnoxious as time went on. I did all my treatments (including the second dose of steroids) and then shut off the tv to settle in. I took my sleeping aid and a full dose of pain medicine and went out immediately. Then, the chaos in the next bed woke me up. There was shouting of bitches and why don't you love me? Then "is that blood coming from your rectum?!" "I need to check my blood sugar!" Constant pressing of the call button and then deciding not to answer so the nurse would scream hello into the intercomm 2-3 times before coming in the room. There were request for benadryl becaus she's allergic to the pain medicne, but didn't want to try a different one. Then, they started doing the transfusion which meant non-stop action until 5:30 am. I think I got 2 hours of sleep last night. My head is pounding.

I think I get discharged to the rehab facility today, but I'm not sure. If not today than tomorrow. I'm actually hoping for tomorrow so I can try to get some sleep in today after the therapy appointments, doctors, and my last steroid infusion. Fingers crossed.

another update

I'm really tired today, so please forgive me if this isn't clear or inclusive. Things are going really well today and I'm making some great improvements. I had my second visit the Physical Therapist today. She's really great. During the first visit she had me up trying to walk and switched me to a walker versus my canes. I still couldn't lift my feet up due to the numbness and sudden weakness. But today, I showed a lot of improvement. The numbness on the left is from ankle down now and on the right, I can use my knee again. I'm lifting my feet a bit when walking and am strong enough to start using forearm crutches. My pain level is also improving. I'm still doing IV pain medicine, but so far today I've only had one dose and am trying to tough it out until after dinner for the second one. I noticed that it was causing nausea, so it's best to take it after I eat instead of before. Oh, it also makes me incredibly loopy, so I try to take it when no one is going to talk to me (like at night).

Now the bad news. I started the steroids today and am having the same reaction. It's not as bad as before, but there is noticeable discomfort in my stomach. I also completely forgot about the metallic taste it leaves in my mouth and didn't get any mints or candies. I think I can tough it out, but it's kind of disgusting. Despite the adverse reaction, I'm going to stick to the treatment plan and hopefully I'll see more improvement in my body over the next few days.

I'm really hoping to feel better by Wednesday so I can avoid doing the inpatient rehab program they are trying to set me up for. I know it's a good thing and can greatly improve my abilities, but our wedding is less than 3 weeks away and I can't see myself being in a hospital until the last few days before the ceremony. Everyone keeps saying that I should just rest and do the program, but I'm really hands on and want to go to all the meetings and prepare the favors. We'll see what happens.

OK and the neuro, Dr. C just came in to check on me. She doesn't want me to take the bladder pills anymore because they put me at higher risk for bladder infections. Which, although they initially thought I had, I have actually never had a bladder infection. Fuck. This makes me really sad. The blue pills were my last hope before diapers or Poise pads and now I'm just being told to take my chances. I'm not happy about this at all. She also doesn't know when I might get discharged or sent to the rehab facility or what. She just said it could happen tomorrow or Thursday or never. I guess I need to be patient, go with the flow, and try to rest and heal.

A little more info

Nilaja brought my computer to me and the hospital has free internet, so I figured I would take this opportunity to update on how I'm doing.

Honestly, I'm not doing so good. While we've managed to get the pain under control, I still have a lot of numbness and can't walk. So, they set up a catheter so I don't have to worry about making it to the bathroom. The doc sent some of the urine to the lab and discovered that I have a bladder infection. So, I'm doing IV antibiotics to knock that out. Meanwhile, I was sent to get new MRIs (this time including my spinal cord) and the on call neuro Dr. C, who I was planning to see for a second opinion, found a legion on my spinal cord. It doesn't mean anything new, but we can add that to the list. Dr. C believes the bladder infection could have sparked all the other stuff happening in my body and wants to treat me aggressively. After three days of antibiotics, they are going to do the steroid infusion. This time, they are going to load me up with medicine before, during, and after to ward off any adverse reaction. They have started me on Protonix and I'm already feeling some relief in my gut. Speaking of which, I'm having an impossible time with food today. Every bite or sip makes me nauseated and I've vomited twice since getting here. I'm hoping this goes away soon. Oh, and they're giving me Ambien to sleep tonight and I've got my fingers crossed that it will work.

I don't know how long I'm going to be here, but it doesn't sound like an overnight stay and morning release. I'm trying to be patient and optimistic, but I don't like hospitals and would rather be at home working on wedding favors. But I am glad to be getting competent and aggressive treatment. I'm starting to feel more secure about having a good wedding day and that's all that matters to me right now.

I'm gonna try to get some sleep now. I'll keep you updated on my adventures in hospital land. And if you're local and want to visit, I'm at Alta Bates in Berkeley. Email me for more details.

Not feeling well

Hi folks,

This is Nilaja. Chris asked me sign on and let you all know that she's in the hospital. Long story short, I took her to the emergency around 2:30 this morning (saturday 6/27/09) due to an increasing in leg numbness and overall pain. The doctors decided it was a good idea if she stay in the hospital for at least a night. So right now she's in the hospital being pumped full of pain killers and I'm heading back there for the evening.

Nilaja