Please excuse me

I keep wanting to update the blog, but there's so much on my mind. I'm not recovering from this last relapse as quickly as I'd hoped and I'm going on 7+ weeks with this headache. Even though I'm back on some of my meds, I'm having a lot of pain, spasticity, insomnia, and fatigue which is keeping me glued to the bed during the day. But I'm trying to stay active and get stronger. I was actually just in bed thinking that I'm ready to try to venture out on my own. I figured I'd head down to Solano Ave for lunch and a movie and then I froze, I couldn't remember which bus to take. That may seem insignificant, but I've taken that trip at least 50 times and shouldn't have a problem remembering how to get to one of my favorite places. It scares me to realize that even recent things are dropping from my memory. It's one thing to go through facebook and no longer recognize half the people on my friends list since I haven't seen or talked to them in years, but I'm starting to lose recent events. I'm not handling this well. I keep trying to be strong and give myself a chance to recover, but I'm so over this whole MS thing. I used to feel smart, articulate, poised, and driven, now my whole day is focused on trying not to pee myself, not hurting myself if/when I fall, not forgetting something important (like the stove is on). It sucks. I really wish I could just get to a point where I can mostly function.

In addition to my own drama, I recently received some bad news regarding my mother that has me pretty depressed and withdrawn. I don't know if she would mind me disclosing the exact information, so I will leave that off for now. But it has my siblings and me very worried and stressed. There's some talk of me going to my hometown for a visit to help with recovery which I will certainly do, but it's causing a little anxiety. I haven't flown since getting my diagnosis and I'm worried about dealing with the injectable kits, my cane/crutches, and going through the process alone. I'll make it through, I'm just adding more stress to a whole lot of worry and pain, which is why I wanted to go hide on Solano. If I do get the nerve up to go out anyway, maybe I'll write the number on my hand so I can get there and back without issues.

I think the sleeping pills are kicking in now. Everything's a little fuzzy.

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.