Chris: My Journey with MS

Gilenya experiences wanted!

2011-12-30T22:21:00.000-08:00

Early this morning I received the following comment on my “Gilenya: Day 00” post from azcharli:

“I started Gelenya on December 19th. The very first 6 hour observation ended with me waking up in the ER with a heart rate of 34. The hospital wanted to keep me overnight for observation. As luck would have it my heart rate went up to 57 just in time for the nurse to tell the doctor and get me discharged. As soon as he saw it I unplugged the monitor and I was out of there.
My heart rate is still in the 40's and 50's.
Anyway 2 days later I had to go back to the ER with blood red eyes and terrible eye pain, oh and the horrible headaches. Not 1 person including my Neurologists assitant have ever heard of Gelenya. Needless to say they had to call poison control to find out about it.
I have been back twice with severe eye pain and headaches. The hospital told me it has nothing to do with Gelenya and sent me home. I just got back again tonight with the same thing. Severe eye pain when i look to one side or another which in turn makes my head pound. Once again they say it has nothing to with the drug. Bull... I have had MS for 17 years and have never had this before. I am curious to see how many others are in my situation. Honestly, I would rather be blind than go through one more day of pain and suffering.
Signed, Scared in Arizona.”

First, a disclaimer: I am not a doctor (and I don’t even play one on TV). The information that I share here is based upon my personal experiences as a patient and should be considered anecdotal. Before trying any recommendation or following any advice offered on this blog (by me or commenters) please discuss it with a medical professional who is fully aware of your medical history.

Sue, I am so sorry you are having this experience. MS is tough enough; we shouldn’t have to deal with all the medication-induced side-effects as well. OR have to put up with medical professionals who are unfamiliar with the drug but are certain that it is not what’s making you sick.

When I read this, my initial thought was that you have optic neuritis. Usually when I have optic neuritis I have excruciating pain whenever I move my eyes and I rub them so much that they get bloodshot. I also get a terrible headache from all the eye pain/stress. But I would suspect that after 17 years you would have had optic neuritis and know how it presents. If you’ve never had it (lucky you), that could be what’s going on. My neuro treats with IV steroids and it resolves.

Outside of that, I have never heard of anyone having this cluster of symptoms or this experience with Gilenya. BUT I know that doesn’t mean much when it comes to MS, side-effects, and drug interactions. And because Gilenya has been on the market for such a short time, I’m sure there are a lot of things that are still unknown about the drug. Frankly, we know that Gilenya can damage our vision, so I don’t understand why it is so far-fetched that it could cause eye pain!

I would suggest having your doctor call Novartis and inquire about your symptoms. It seems that with most drugs there are symptoms that are so rare that they don’t have to report them on the information sheets. With a simple phone call from a medical professional, the drug company will let you know if this is a side-effect of the drug. It is also good to share this information with them (especially with new medications) so they can keep record of the various side-effects. Who knows, maybe your experience isn’t so unique after all.

I’m gonna link to this post on my Twitter, Facebook, and Google+ accounts. I invite everyone to share their experiences with Gilenya in the comments. Just remember that these drugs work differently for each person, so check with your doctor before making any health-related decisions.

Gilenya: Days 02 - 07

2011-07-18T20:37:00.000-07:00

Current medication: Diltiazem, Zyrtec, Vitamin D (high dose- taken on Wednesday), Gilenya, Ibuprofen, Baclofen, Lamotrigine, Tizanidine, Lyrica, Vicodin

Mood: Sad, frustrated.

Physical: right foot numbness, jaw pain, headache, nausea, chills, scratchy throat, tingling lips, cough, extreme fatigue, dizziness, sharp pain in right calf, stiffness in both legs, hypersensitivity in both legs, shadow-like presence in lower right quadrant of right eye, difficulty with balance.

Neurological: difficulty focusing/multi-tasking, occasional slurred speech/lazy tongue, confusion, difficulty saying certain words.

Sleep: On 7/18/11- 7 hours uninterrupted, 1 “sleep episodes” around 1:30 PM.

Other (falls, dropping items, etc): None

Aids: canes

Tests/Results: closely monitoring blood pressure-still slightly elevated.

Appointments: None

After seeing the NP last Tuesday, I went home to rest. Basically, she wanted to see me and make sure I was OK. They took my blood pressure, gave me ibuprofen, and monitored me for a half hour. I was released home and cleared to return to work on Wednesday. She also reminded me to take Zyrtec twice a day to relieve some of the discomfort (it isn’t working).

Since then, things haven’t changed. I am in a lot of pain and have increased all forms of pain management without much relief. The pain level makes every day tasks even more difficult than they were a few weeks ago and it is slowing me down immensely. I feel like my head is full of oatmeal. Not good.

I am still moving forward with Gilenya. I received my first 28-day shipment today and didn’t panic or freak out. That’s good right?!?! Yes, let’s take our victories as they come.

Now I just need my body to work better so I can cut that list of meds down again. I was doing to so well for months without such a long list. My budget will thank me, too.

Gilenya: Day 01

2011-07-12T18:45:00.000-07:00

(This covers the time from the last post until 11 AM today.)

Current medication: Gilenya, Ibuprofen, Baclofen, Lamotrigine, Tizanidine, Lyrica, Vicodin

Mood: Anxious, sad, afraid.

Physical: terrible headache (7 out of 10), nausea, scratchy throat, tingling lips, cough, extreme fatigue, dizziness, sharp pain in right calf, throbbing-ache in both legs, stiffness in both legs, hypersensitivity in both legs, right eye pain with movement, shadow-like presence in lower right quadrant of right eye, difficulty with balance.

Neurological: difficulty focusing/multi-tasking, occasional slurred speech/lazy tongue, confusion, difficulty saying certain words.

Sleep: 2 hour nap then 5 hours uninterrupted, no “sleep episodes” today.

Other (falls, dropping items, etc): Extremely high blood pressure

Aids: canes

Tests/Results: Pre-Gilenya skin check clear, high blood pressure throughout the day before and after gilenya

Appointments: 07/12/2011 11:30 AM with NP to discuss side-effects, scheduled to see PCP on 07/15/2011 at 10:45 AM

Started Gilenya today. Shortly after the first dose I began feeling a scratchy throat and tingling lips. After 1 hour, by blood pressure spiked dangerously high in response to the medication, but there were no other cardiac symptoms so we just waited for it to return to normal on its own. As the day progressed, I developed a cough, headache, and felt numbness/tingling in lips. When released at the end of the observation period, the NP suggested I return for observation the next day but I refused and promised to check-in the following morning. When I came home I was exhausted and took a nap and an anti-inflammatory. I felt very cold and shivered the whole time, but didn’t have a fever. After the nap I sat up for 30 minutes or so then returned to bed for the night. It took about 90 minutes to fall asleep because I couldn’t get warm, but once I was sleeping, I stayed asleep until my alarm rang. I woke up feeling much worse. The headache was almost unbearable. I took the second dose of Gilenya at 6:10 AM and about 30 minutes later the scratchiness and tingling returned. My energy was low, but I went to work. I checked-in with the neuro’s office around 10:45 AM and after reporting my symptoms they wanted to see me immediately. I left work and headed to the office.

Gilenya: Day 00

2011-07-11T07:28:00.000-07:00

(This is the first post in a series I'm hoping will document the changes that occur while I take Gilenya. The details of each post will cover anything that happens from the time of the last post to the time of the current post unless otherwise specified (versus a 12:00 AM-11:59 PM schedule). Every 4 weeks I will do a retrospective/summary entry using the same format.)

Current medication: Baclofen, Lamotrigine, Tizanidine, Lyrica, Vicodin

Mood: Anxious, hopeful.

Physical: sharp pain in right calf, throbbing-ache in both legs, stiffness in both legs, hypersensitivity in both legs, right eye pain with movement, shadow-like presence in lower right quadrant of right eye, slight blurry vision helped with reading glasses, difficulty with balance, headache, mild fatigue, sleepiness.

Sleep: 6 hours, woke up approximately 5 times (momentarily) during the night, no “sleep episodes” today.

Neurological: difficulty focusing/multi-tasking, occasional slurred speech/lazy tongue.

Other (falls, dropping items, etc): None.

Aids: cane

Tests/Results: None

Appointments: 07/11/2011 8:30 AM with NP to start Gilenya

In general, I feel “normal.” Most of the things going on have been constant for some time. The eye pain started nearly 3 weeks ago and was checked by Dr. C. She thinks it will resolve in time, I disagree. The visual presence is similar to what happens after you stare at a bright light or light bulb then look away. It started last Wednesday night and has not gone away. I will speak to the NP while in the office today and ask her if there is any cause for concern.

Gilenya.

2011-07-10T16:03:00.000-07:00

My last post was titled “It’s Been Awhile,” but who knew it would take me 15 months to get back into the groove of writing. I’m hoping to update more often because I have quite a lot to say.

In the past 15 months a lot has happened. I started working full-time, started taking Betaseron, stopped taking Betaseron, started Tysabri, stopped Tysabri, had flare-ups roughly every 3 months, developed 3 new lesions, and decided to start Gilenya, or as Dr. C calls it, The Pill.

Gilenya is the spark I needed to get my fingers back on the keyboard. I guess it’s the newness of the drug and all its big promises that has me ready to document the changes of my body in the hope of looking back in a few months and seeing actual improvement in my condition.

Over the next few days or weeks I will do more in-depth entries about the other occurrences, but this entry is about Gilenya.

First off, I’m terrified about starting a new drug. This feeling isn’t exclusive to Gilenya, but seems stronger because it’s not just new to me, but it’s new to everyone. Gilenya (fingolimod) was approved by the FDA in September 2010 and is the first oral disease-modifying treatment. It’s not a cure. However, it is designed to slow down the progression of the disease and reduce the number of flare-ups for folks with relapsing forms of the disease. It’s also believed to make day-to-day life easier, which is a major plus for the drug. Oh, and it’s a pill! Personally, I don’t miss the needles and I’m sure every person that has chosen to try Gilenya absolutely agrees.

But with all drugs, there are risks. According to the Gilenya.com Patient Medication Guide:

GILENYA may cause serious side effects, including:

· Slow Heart Rate (bradycardia or bradyarrhythmia) when you start taking GILENYA.

GILENYA can cause your heart rate to slow down, especially after you take the first dose. Your heart rate will usually slow down the most about 6 hours after you take your first dose of GILENYA. You might feel dizzy or tired or be aware of a slow or irregular heartbeat if you heart rate slows down. Usually, if you experience these types of symptoms due to the slowing down of your heart rate, they will occur during the first 6 hours after the first dose.

Your doctor will watch you for the first 6 hours after you take the first dose to see if you have any serious side effects. Your slow heart rate will usually return to normal within 1 month after you start taking GILENYA.

· Infections.

GILENYA can increase your risk of serious infections. GILENYA lowers the number of white blood cells (lymphocytes) in your blood. This will usually go back to normal within 2 months of stopping treatment. Your doctor may do a blood test before you start taking GILENYA.

· A problem with your vision called macular edema.

Macular edema can cause some of the same vision symptoms as an MS attack (optic neuritis). You may not notice any symptoms with macular edema. Macular edema usually starts in the first 3 to 4 months after you start taking GILENYA. Your doctor should test your vision before you start taking GILENYA and 3 to 4 months after you start taking GILENYA, or any time you notice vision changes during treatment with GILENYA. Your risk of macular edema may be higher if you have diabetes or have had an inflammation of your eye called uveitis.

· Breathing problems.

Some people who take GILENYA have shortness of breath. Call your doctor right away if you have trouble breathing.

· Liver problems.

GILENYA may cause liver problems. Your doctor should do blood tests to check your liver before you start taking GILENYA.

Evidence of these problems and minor side-effects include:

• dizziness

• tiredness

• a slow or irregular heartbeat

• fever

• tiredness

• body aches

• chills

• nausea

• vomiting

• blurriness or shadows in the center of your vision

• a blind spot in the center of your vision

• sensitivity to light

• unusually colored (tinted) vision

• nausea

• vomiting

• stomach pain

• loss of appetite

• tiredness

• your skin or the whites of your eyes turn yellow

• dark urine

• headache

• flu

• diarrhea

• back pain

• abnormal liver tests

• cough

With this very long list of (known) things that could possibly go wrong, I think I have every right to be terrified. Don’t I? I’m definitely going to start the medication tomorrow, but I’m still worried.

You see, I have a history of being allergic to or exhibiting rare side-effects of medications. In college I was prescribed a mood stabilizer that made me spontaneously burst into tears. No one believed it was the drug. Finally I convince my doctor to call the drug company and “spontaneous tearfulness” was one of the rare side-effects. It’s so rare that they didn’t have to list it in the prescribing information. Or, my weird allergies to gadolinium, Vioxx (this was before the recalls and both my parents and doctor told me that my symptoms were made up), Cymbalta, Avonex, and Tysabri. There are others of course, but these stand out because I was told that I wouldn’t have any real problems. Well, no significant problems, but I did.

So I’m terrified that Gilenya will join this group and leave me blind and unable to breathe.

However, I am going to my doctor’s office tomorrow morning and I’m going to swallow that little capsule. I’m gonna sit there for 6-7 hours, reading, writing, listening to music, and munching on snacks. Nothing is going to go wrong. I’m not going to be allergic, and this medication will work for me.

In spite of all my fears, I sincerely believe that Gilenya will make a positive difference in my life. I look forward to the changes and am excited to write about them here.

And that’s my plan. I’m going to do periodic posts titled “Gilenya: Day XX” that will include a list of medications, symptoms, mood, etc. I’d like to promise that I will post daily, but I’m aiming for at least weekly. Hopefully after a few weeks or months there will be definitive proof of the effect of Gilenya on my MS.

Fingers crossed.

It's Been a While

2010-02-19T10:56:00.000-08:00

Hi. I know I haven't updated in a while, but I have a good reason. Actually, a dumb reason but it's the real reason.

See, last November I started thinking that I was making myself sick. I thought that the more I talked about MS and blogged about MS, the sicker I was gonna get. Yes, I know this sounds crazy, but I'm the kind of person who believes that I can manifest anything I want just by believing it and "speaking it into existence." So, I guess I figured that if I stopped talking about being sick then maybe I would start feeling better. And honestly it seemed to be working. I was feeling good and even walking without assistance. My symptoms were manageable and I even started working on some of the emotional aspects. Things were going so well, that I started applying for full time jobs and even had a job interview that I was excited about.

Of course January comes around and I had another friggin flare up. Another one. Another course of steroids, which meant another 3 weeks of stomach issues, and another month of insomnia. This was my third since diagnosis and fourth in 14 months. On the bright side, I caught it early and didn't need to stay in the hospital for a week, but I started the steroids less than a week before the second round of a job interview process (a different job than the December opportunity). The interview went horribly because I couldn't remember anything, I struggled with finding words, and I doubt I hid the fatigue and pain. I was pretty bummed about this, but I keep sending out applications and hoping to get interviews.

This has all left me fed up and stressed out. I don't think the interferons are working and my symptoms aren't being well managed. I just feel so sick and it's pretty hard to be confident when you are numb, tingling, and hurting. Oh, and to make things worse, we're moving again because our apartment has mold. I'm trying not to stress about it, but it's so gross and I can't wait to get to the new place. Hopefully, once we move things will stabilize and I can focus on the job hunt. (If anyone local knows of any full or part time work in Oakland, please let me know.)

Anniversaries.

2009-12-02T11:57:00.000-08:00

One year ago today I had the flare-up that changed my life. It was the first time I had one of these episodes and didn't have much recovery. It was also the first time someone in my life really pushed me to follow up with a doctor and figure out what was going on. Despite all the difficulties of the past year, I'm still optimistic about my future and confident that things will get better.

Good and Bad

2009-11-20T23:36:00.000-08:00

I know I should be sleeping in preparation for my group meeting tomorrow, but I can't sleep. I finally had my long awaited follow-up appointments with the rheumatologist and neurologist this week. Some good news, some bad. The good news, I don't have lupus. I wasn't surprised to get that news, but was a little peeved that I had to take a 30 minute bus ride, wait an hour, and pay $20, just to have 2 minutes with the rheumatologist. She's really sweet and was very thorough, but all she had to say was, "you don't have lupus" and that could have been done over the phone.

Today's appointment with Dr. C was much more eventful. I still had to wait an hour, but I got my money's worth. Since they never seem to listen to me, I came to the appointment with a list of my current symptoms that I gave the doctor as soon as she walked in the door. I included descriptions of each symptom and told her I wanted help with all of them. We discussed them and then she explained that she only felt comfortable working on two at a time and we can work on the list over the next few appointments. She suggested which two she thought were most important (bladder control and depression), but gave me the power to choose which ones I wanted to work on. I explained that my ultimate goal is to get back to work and my memory loss and current level of depression are making it really difficulty to do anything. I mean, I'm terrified of getting lost again and I'm too depressed to muster a smile most days, so leaving the house only happens when absolutely necessary. That's not exactly compatible with most work environments.

Dr. C said there isn't much she can do for memory loss directly, but believed that my mood could be tied into the memory problems. She wants me to see another doctor at her clinic to be evaluated and determine the best course of action for the depression (he's a neurologist and psychiatrist). In the meantime, she wants me to start an anti-fatigue medicine that has helped some of her patients with their cognitive difficulties and mild depression. I see the other doctor in three weeks, though I wish I could have seen me today. Hopefully, the anti-fatigue stuff will help.

Since we're hitting three list items with one pill, she let me pick one more item and I chose bladder. I recently had an accident at home and it's honestly just as hard to deal with, emotionally, as accidents in public. I told her that I have some incidents of sudden emptying, but mostly my problem is urgency that leads to leaking when I can't find a restroom in time. She wasn't sure if my perception of the problem was correct and said that it's more common that I am not fully emptying my bladder when I pee and that could be leading to my problems. To determine the cause of my problem she needed to ultrasound my bladder when full and after I peed. Of course I'd emptied my bladder just before seeing her. She still wanted to do the ultrasound during that visit and presented me with a 12 oz cup of water. I drank 4 full cups before we were ready to do the ultrasound. My bladder was in fact emptying properly and she prescribed and once daily oral medicine to help with the urgency.

All-in-all the appointments went well. I usually take a list with me, but it made a huge difference to give a list to the Dr. and not wait for her to transcribe what I was saying. Or what she thought I was saying. Next time I want help with insomnia and pain.

I Need Sleep

2009-11-17T11:46:00.000-08:00

I know that my struggle with insomnia is old news. I had trouble sleeping long before my diagnosis and I'm sure it will continue until the end of time. Unfortunately, my ability to function on little sleep or poor sleep has greatly diminished. Without adequate sleep, my symptoms are a nightmare. From the moment I wake up, my legs burn and tingle, I feel dizzy, my vision is unstable, and I have cognitive difficulties. Basically, when I wake up I feel similar to how I feel at the end of a long day. Not good.

This is especially true after my most recent episode (we aren't calling it an exacerbation yet) which has left me needing at least 8 solid hours of restful sleep. This isn't much of a problem usually because my schedule allows me to set sleep hours that fit my need. I lay down around 10 pm and on most days I sleep until 8:30 am (sometimes later).

The problem has actually become creating and maintaining the conditions I need in order to have a restful night of sleep. Even with a sleeping aid, body temperature, ambient noise, and room darkness can be sleep deal breakers. Sometimes it means needing 2-3 hours to get over the hump and fall asleep, but more often, it means spending the whole night in a semi-sleep state that results in the same problems as not sleeping plus a weird mental fog. It makes me anxious and I feel trapped inside myself.

I am battling this today. I am out of sleeping aids and even with all my efforts to exhaust myself, sleep is getting more and more difficult. The past few nights I was patient and made it over the hump. But last night I was never able to get over the sleep hump and spent the whole night trying to block out my surroundings and get comfortable. Last night was especially bad because everything bothered me. I even tried to sleep on the couch, but that didn't work and caused more problems. Now I'm in the fog. Ugh! I had so much I wanted to do today, but I don't have the strength or stamina for any of it. Maybe tomorrow, if I can get some sleep tonight.

Humiliating.

2009-11-08T15:42:00.001-08:00

Today I attended a National MS Society sponsored function for African Americans with MS. I was interested in this event because I don't know any other African Americans (AA) with MS and have not been able to determine if my ethnicity has any bearing on the progression of the disease, primary symptoms, etc. As with all things MS, there is no conclusive evidence that ethnicity has any bearing on disease progression. Of course there is some genetic factors that make MS less likely in AA families, but since MS is not purely genetic, ethnicity is only a piece of a very large and complicated puzzle.

However, the first speaker (a prominent AA neurologist) did mention something interesting. She said that AA tend to have more eye problems and more waist-down numbness and pain. This was really interesting to me since I tend to have a lot of eye and leg problems. I also noticed that almost everyone at the meeting used a cane or crutches and the others were in wheel chairs. This didn't make me feel good at all.

The second speaker was a researcher and his presentation focused on the genetics behind finding the cause of MS and even with my science background, I found him hard to follow. They also served lunch while he spoke, which meant a lot of focus on eating and very little focus on the science.

The final speaker was a marriage and family therapist with MS and he was there to discuss the emotional side of MS. I was looking forward to this portion of his talk until I received the handout. I identify as a Christian and strongly believe that my faith helps me deal with the challenges of MS. However, I DO NOT believe that I have MS because I lack faith. I DO NOT believe that prayer will heal me. I DO NOT believe that I should turn to God and not a doctor when I encounter disease complications. After seeing the handout, I wanted to leave, but decided to stay and give the speaker a chance. Perhaps the statements on the page were going to be debunked and he was going to support a healthy mix of religion and medicine. But he didn't. When he started saying that a person may think they have faith in God, but the presence of MS is proof that they've faltered, I packed up my things and walked out. I honestly don't care what people personally believe, but I refuse to be shamed and blamed for being sick. No thank you. I plan to share my displeasure with the NMSS tomorrow.

The meeting location was about 10 blocks from my house, so I walked there. I used both crutches and took my time getting there. It took me 20-30 minutes, and I had enough time to get my bearings before the speakers started. The journey home didn't go so well. I was exhausted when I left and fatigue heightens all of my symptoms. I stepped out of the building, looked around, and had no idea where I was. I stood there a moment trying to get my bearings and figure out which way to go, but I couldn't remember the right direction. I walked around a bit and finally stopped someone to ask for help. The very nice lady was more than happy to help me, she just needed to know where I was going. "Jackson Street," I told her. "Jackson and what?" I opened my mouth and nothing came out. "Do you know the address?" I said, "Yes, I'm going home." And I just stood there, trying not to panic, and trying to remember my address or my cross street. I started to cry. She smiled and said, well let's go down to Jackson and see if anything is familiar. Of course, once we got to Jackson, I was still lost. And then my brilliant new friend asked me if I had any identification with my address on it. YES!! My driver license has my current address on it! She graciously walked me to the front of my building and after I said a million thank yous, she waited until I got in the door and waved goodbye.

I can't tell you how terrified, embarrassed, humiliated, and demoralized I felt when I couldn't get myself home. I've always been afraid of getting lost, but there's a big difference between being lost and not even knowing where you're going. I've been afraid of this happening, but didn't think it would happen so soon. I'm trying to remain positive and not let this one incident discourage other solo ventures out of the apartment, but I'm shaken up. I don't like the severity of my current symptoms (I had a fall recently and my pain is out of control) and I think my doctors need to reevaluate my treatment and come up with better ways for me to manage. Because, I'm trying to cope, but I can't live like this.

Progress.

2009-11-05T20:39:00.001-08:00

I had a really productive day. Today is exactly one month after I was released from the hospital and the rheumatologist wanted me to get a full series of blood tests done today (to determine if I also have lupus). Since I hadn't been out by myself yet, Nilaja offered to drop me at the lab so that I only have to sit through one bus ride. The thing is that she leaves for work at 6:50 am and in order for us both to be ready in time, I set my alarm for 5:30 am. After I got over the shock of hearing my alarm that early in the morning, I managed to shower and get dressed without incident.

Nilaja dropped me in front of the building and I made it up to the first lab just as it was opening. I knew there were a lot of tests to be done, but I wasn't prepared for them to take 7 full vials of blood and a urine sample. Luckily, this lab is really good at finding my veins so it was painless. I was there for less than 20 minutes and proceeded to the second lab for another test. (I didn't know that I would have to go to two labs, but the first lab isn't equipped to do cryoglobulins. I'm glad I chose a site with two different labs in the same building.)

This time they only needed to take one vial of blood, but the experience was much worse. After explaining to the phlebotomist that I'd just had a lot of blood drawn from one arm and my veins roll, she rolled her eyes and said it's easier for her to draw from my right elbow. Well, if I learned one thing from this last hospital stay, it's that I have don't have to let anyone do anything to my body that I don't agree with. And when she pulled back the bandage and started poking at the still bloody spot on my arm, I pulled away and asked for someone else. She then explained that she was there alone for another hour IF the next person shows up or I could go somewhere else but she wasn't sure what labs in the Bay Area did that test. I smiled and said, "I'll wait." Empowerment feels damn good! Of course, just as I gather my things and start toward the reception area, another phlebotomist (a supervisor) comes in the door and manages to find a vein and draw the blood before I could finish complaining.

I didn't secure a ride home from the lab, so I took the bus. This was my first time on the bus since September and it went well. I'm not sure I should have been on a bus yet, but I made it home safely. I even stopped for a nice big cup of mostly decaf coffee (I dumped out about half and swapped the rest for milk and sugar). Of course the small amount of regular coffee they mixed into my decaf kept me buzzing all day long. And you know how frustrated I get when I want to sleep but can't.

I spent most of the day watching tv, but took a long break from that to apply for few jobs. That's right folks, I'm trying to get back to work already. Once again, I'm not sure I'm ready or how I'll make it through the day, but I have to try. I can't be afraid to go back to work. If I don't make it, oh well, at least I put in the effort. So far, I've applied for part-time and full-time administrative assistant and receptionist positions, since I think those will be the easiest for me to transition into as I rebuild my skill set. I sent three resumes today and will keep looking for other opportunities until I find something.

Grateful.

2009-11-01T19:09:00.000-08:00

I'm having a really bad day, but I don't want to talk about it. It's so easy to get bogged down with how bad things are and completely ignore the good things in my life. So, I decided to make a list of 10 good things in my life and all the ways I am grateful.

1. My wife. I feel happy/lucky/blessed to have someone who supports me through everything. Things have been rough over the past few weeks and she always steps up in more ways than I could ask. I especially appreciate all the shopping she does as I still don't have the stamina for a trip to the grocery store.

2. My mother's condition is treatable and follow up appointments yielded lots of favorable results. Once again, I don't have consent to disclose her condition, but I can say that my whole family is breathing a sigh of relief. The issue isn't resolved, but we have more answers and she has an excellent prognosis.

3. My sister. I talk to my sister a few times a week and it's a necessary mood booster. We also have very similar beliefs and morals, so if something is bothering one of us, it's easy to rant and release frustration.

4. My friends, especially Sophia, Susan, and Jamie. I think I've mentioned before that it's hard for me to ask for help and I like to do things for myself. Unfortunately, no matter how much I want to be the self-sufficient control freak, I am now facing challenges that require assistance and I'm grateful to have people around me that can help me when I need it. I appreciate all the help and support whether it was providing rides, company, information, reassurance, or advice.

5. My cane/crutches. Most of my problems lately have involved mobility and I'm grateful that I have my cane and crutches. Without them, I wouldn't be able to get around the apartment.

6. Betaseron co-pay assistance program. I'm back on the injections (boo!), but recently received confirmation that I have a $0 co-pay each month. Previously, I paid $50/month, so this is incredible.

7. Decaf coffee, peppermint tea, and baked potatoes. All three have made me exceedingly happy today.

8. Sleeping aids and techniques. Never underestimate the power of a full night of sleep.

9. Critical reading material. I mostly read online articles and love anything that challenges racist, sexist, ableist, sizest, homophobic, transphobic, and xenophobic aspects of society. I especially love having Facebook friends that link me to articles that keep my mind alive (though, I wouldn't mind not having things to read).

10. Health Insurance. I'm not sure what my life would be like if we didn't have health coverage. The coverage isn't perfect and I still pay a rather healthy amount out of pocket, but it's a huge relief to be able to go for care when I need it and not worry about footing the whole bill. We were uninsured growing up, so I know how detrimental the fear of medical bills can be on any family. I can't imagine going through all this without coverage.

Please excuse me

2009-10-27T23:18:00.000-07:00

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

2009-10-13T06:50:00.000-07:00

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.

2009-10-13T05:17:00.000-07:00

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.

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.
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.
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.
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.

2009-10-06T18:35:00.000-07:00

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

2009-09-25T18:45:00.000-07:00

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.

Still in bed

2009-09-24T08:19:00.000-07:00

I am nearing the end of my rope with this. I have never had this much pain, numbness, fatigue, dizziness, and light-headedness before and it's wearing me out. I have to crawl (and drag my left leg) if I need something (like the bathroom) but I don't have enough stamina to make it there without stopping to rest halfway. This also means that I have not been able to feed myself because even if I make it to the kitchen, I haven't figured out how to reach things. My wife left me her desk chair to use today to help me get around, unfortunately without the help of my feet, I can't move the chair across the carpet. I actually laughed out loud when I sat down and realized I wasn't going anywhere. I guess laughing is better than crying, I've done enough of that thanks to the pain. I'm starting to wonder if I should give this more time or if I should contact my doctor. I don't know if there's anything they can do over the phone and I obviously can't get myself there. I don't know what to do. Guess I'll go back to sleep.

ETA: I just had another surge of stabbing pains in my thighs, so I called my neuro. I left a message for the doctor and not just for the NP. We'll see what comes of this.

Not good and getting worse

2009-09-23T10:08:00.000-07:00

If you follow me on Facebook or Twitter, then you know I'm going through a rough patch. Unlike the rough patch that I was having earlier this month, this time I'm having a lot of physical challenges along with my cognitive troubles. Since Sunday, it's gone from intense fatigue to not being able to walk, even with the assistance of my crutches. It's incredibly frustrating and demoralizing. I keep telling myself to be strong, it will pass, but I'm on day 3 in bed and am losing all patience with my MS.

Despite all the symptoms, I don't think this is an exacerbation. I could be wrong, but having had a major episode just 3 months ago, I can't see another one coming so soon after. Plus, this one is so different from the last. Last time it hit me quickly, but this time it's slowly building up and getting worse. But you know what, exacerbation or not, I feel like crap.

As of this morning, my entire left leg is heavy and numb and so is my right foot. My legs are covered in prickly, burning hot pain that runs all up and down them and gets worse in any spot that's touched. I also have a pressure (like my head is being squeezed) and stabbing headache on the right side that's causing my eye to throb and water. I'm incredibly fatigued and sleeping all day and all night with little difficulty. When awake, I'm pretty alert, but I have moments where I completely zone/space out and can't think at all. This is one of the more puzzling symptoms, because when it happens I feel like I completely disconnect from my body and am just sitting next to myself. It's really strange.

So, I'm just trying to cope and let my body heal. I see the neuro next Wednesday and am gonna try to tough it out until then. For now, I am thankful for the internet and that we have a tv in the bedroom.

30 Things

2009-09-16T20:45:00.000-07:00

Thanks to one of my favorite blogs, Definatalie.com, I was alerted that it is National Invisible Chronic Illness Week. Multiple Sclerosis is often described as an invisible illness, especially for sufferers who don't use mobility aides. To commemorate this week, I've decided to complete their "30 Things" meme. Enjoy!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Multiple Sclerosis

2. I was diagnosed with it in the year: 2009 (March 5)

3. But I had symptoms since: at least 2002-2003

4. The biggest adjustment I’ve had to make is: There are several. Learning to listen to my body and not dismiss random sensations. I have to accept when I'm tired and not get down on myself when I reach my new limits. Being ready for unpredictable bladder control. All of the cognitive challenges are giving me a tough time. I feel dumb and spacey, especially when I can't form sentences or remember things that should be easy to remember. I've also lost some really close/meaningful relationships since getting my diagnoses and it's been hard adjusting to people seeing/treating me differently.

5. Most people assume: People often see me with my cane and assume I hurt my leg. I think some people assume I've changed a lot, and I don't think I have.

6. The hardest part about mornings are: Trying to shake off the grogginess and drag myself out of bed. I also have a lot of morning pain and stiffness, so sometimes I have to lay there for 30+ minutes just to gather up the strength and courage to move.

7. My favorite medical TV show is: House.

8. A gadget I couldn’t live without is: My iPod touch. Everything is in there, appointments, medicine reminders, and important records. I have it with me at all times.

9. The hardest part about nights are: Relaxing enough to get over the pain and restlessness to fall asleep. On good nights, I fall asleep in 30-40 minutes after laying down, but it could take hours to get to sleep on some nights.

10. Each day I take __ pills & vitamins. 8 different types, but a total of 15 pills throughout the day. I also do a subcutaneous injection every other day.

11. Regarding alternative treatments I: The only alternative treatment I try currently is Vitamin D. I am not yet ready to try something alternative as my main treatment, but am open to supplemental treatments.

12. If I had to choose between an invisible illness or visible I would choose: I don't know how to answer this. Can I choose neither? Hmmm, maybe a visible illness? I don't know.

13. Regarding working and career: I want to work again, but honestly I'm afraid of getting back out there. Maybe this is because of my recent difficulties and in a few weeks I'll be back on my feet. I'm still optimistic and applying for jobs everyday, but I don't know how successful I will be when I can't find words or remember why I'm qualified. We'll see.

14. People would be surprised to know: I'm much more afraid and worried about my prognosis than I give off. I try to be strong and optimistic, but I'm terrified of what the future holds. I also still have falls and bladder accidents, though I try not to talk about it.

15. The hardest thing to accept about my new reality has been: Giving it a place in my life. Especially now that the symptoms are too much to ignore or suppress, I am constantly aware of being sick. Oh, and all the pills and injections, I hate them.

16. Something I never thought I could do with my illness that I did was: Dancing at the wedding without being tired or in tons of pain. That was the best.

17. The commercials about my illness: I haven't seen any. At least I don't remember seeing any...

18. Something I really miss doing since I was diagnosed is: Not caring. Not caring about what I eat or when I eat. Not caring what time it is or what day it is. Not caring if there are bathrooms nearby or if it's going to be warm.

19. It was really hard to have to give up: Going out and roaming around all day alone. Since my symptoms are still unpredictable, I rarely go out alone and when I do, I don't spend a lot of time out.

20. A new hobby I have taken up since my diagnosis is: Painting. I don't do it often enough, but I love it.

21. If I could have one day of feeling normal again I would: First, I don't know what normal is or remember how normal feels. If I could have a day without pain or fatigue, I would go for a walk along the bay or a day of shopping. Then I would watch a double feature and get a huge drink. Later, I would eat a good meal and enjoy a few glasses of wine, then spend the evening dancing.

22. My illness has taught me: To appreciate life. Even during the most difficult times, there are reasons to be thankful. It's also taught me to plan and be prepared.

23. Want to know a secret? One thing people say that gets under my skin is: Well, I HATE when people offer me a cure. HATE. I also hate when people try to "help" me manage my condition or try to persuade me to do what they think is best for me. I also don't like being told that I look good or seem happy, especially in response to me saying that I feel ill.

24. But I love it when people: Let me rant. Visit me or invite me to visit them. Send me funny internet links. Chat with me online.

25. My favorite motto, scripture, quote that gets me through tough times is: "He'll never put more on me than I can bear." It's from a Kirk Franklin song. I don't talk about my faith often, but I do identify as Christian and find a lot of strength in religion. I truly believe that no matter how tough life gets, it is never more than I can handle. Music also gets me through the rough times, which is another reason why my iPod is essential.

26. When someone is diagnosed I’d like to tell them: Stay strong. Life isn't over when you get a diagnosis, it's just taking a different path. If you believe you can make it through, you will make it through.

27. Something that has surprised me about living with an illness is: It sucks. No really, it sucks. I never expected to have so many crappy days or feel so shitty all the time. I'm hoping that in the next few months I'll get back to a place where this all feels manageable.

28. The nicest thing someone did for me when I wasn’t feeling well was: Visit me. I really really really like having visitors and appreciate when people come say hello, invite me to hang out with them, go to movies with me, or take me for coffee (just to name a few). Human contact makes my day.

29. I’m involved with Invisible Illness Week because: It's really easy to forget that people all around us are suffering whether we can see it or not. I decided to post this as a reminder that health and ability go beyond what we can see. Life is hard whether we can see it or not.

30. The fact that you read this list makes me feel: Loved. Appreciated. Heard.

Shitty.

2009-09-11T12:47:00.000-07:00

For the past week or so I've been trying to sit down and wrangle my thoughts, but failing miserably. I am having a really tough time and even a visit to the neuro didn't offer any answers. I can't even describe what's going on with me and maybe that's why the visit was unproductive. But I'm alive, my pain is being managed, and I'm walking. Not sure I can ask for or expect anything more.

My Day at the Hospital

2009-09-02T18:46:00.000-07:00

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.

Organized.

2009-09-01T17:43:00.000-07:00

From the time I posted last night until right around lunch today, I was dead set on my next post being a long list of why I have the right to be upset about the LFTs (liver function tests). I planned to explain how I logically know that there's nothing to worry about, but my emotional/irrational side has more reasons for me to wig out. And then I completed a project that I've been working on for years and wanted to take the time to brag about it.

Today I sorted, filed, shredded, and recycled the huge pile of miscellaneous paperwork that I've been holding on to since college. It was mostly mail, pay stubs, receipts, important letters and such, that just needed to be organized. But with my hoarder tendencies, I have always had a hard time going through the pile. Of course, once it gets out of hand or I'm preparing to move, I start to tackle the pile and kinda get it organized, but I never finish it. And I never truly purge the unnecessary stuff. I toss out a few things and then return the whole pile to a box or plastic grocery bag. This has honestly been the trend since college and I've carried various forms of this pile from Maine to California and it has grown with each move around the Bay Area.

The hard part came with our move to our current home which is small and doesn't have a lot of storage space. I had one box full of papers that I hid in my closet and a huge pile of current mail and documents that covered the floor just outside my closet. On top of this pile of papers I tossed clothes, pillows, purses, and pretty much anything else that I didn't feel like putting away. This pile routinely gets knee-high and Nilaja will coyly ask, "how do you get in your closet?" and I'll know that it's time to sort out the big items (like toss the laundry into the hamper). To be fair, I don't think Nilaja really cares about me being messing and often tells me to sit down when I get into my cleaning frenzies (which have never included tackling the pile), but the pile of crap was monstrous and often encroached on my safe passage to the bed.

I knew it was time to tackle the pile when I was talking to my gastro and had to paw through the crap on the floor in order to find the notebook where I keep my current health info. It was ridiculous. So I got up nice and early, ate a sensible breakfast, put on a podcast, and set out to tackle the monster. I started with the box in the closet. I looked at each page and sorted into one of three piles keep, recycle, shred. Then I took the keep pile and separated by type (pay stubs, credit card statements, health info, etc). The good thing about taking a second look is that I could decide if it was something I really needed, like an envelope full of wine articles ripped from magazines or a 4-year old collection of blank New York Times crossword puzzles. Purged. Once things were in their categorized piles I could easily organize them (reverse chronological order) and put them in my file box. I did the same process for the stuff on the floor.

The whole process took about 3 hours without breaks and I feel so relieved. I've wanted to complete that project for years and I'm glad I was finally able to do it. That made for an amazingly productive day and I look forward to never having another pile of crap ever again.

In other news, I called and scheduled the stomach emptying study. It's tomorrow morning at 8:30 am. I don't know how long it will take since it's done in intervals and it will keep going until they get all the results they need, but that's a good thing. I think this procedure will answer a lot of questions when it comes to the pain and nausea. I'll tell you all about it tomorrow evening.

Bad news.

2009-08-31T19:04:00.001-07:00

I have so much I want to say and write about, but I just received a call from my gastro that has me quite distracted. He just received my latest blood test results and my liver function tests are "extremely high." I think he said the numbers are quadruple what they should be. I don't know what this all means for me, but he has me scared. I knew that Betaseron could do awful things to my liver, but I didn't know exactly what these awful things were. Notably, he mentioned that it could create some sort of autoimmune Hepatitis as my body begins to attack my liver. Lovely. He told me there isn't much he can tell me from the one general blood draw that he had done, but he's going to collect my history and he's sending me a more detailed order that he wants me to do ASAP. Interestingly, I've had liver function tests done before and the last time, July 22, was a few days after I started taking full doses of the Betaseron and one of my tests was elevated. I told Dr. H all of this and he asked me for two specific numbers from the results (which I have on hand), AST and ALT. In July my AST was high normal while my ALT was slightly elevated (deemed "not clinically significant"). Now they are both elevated. Really elevated. The good news is that my ultrasound was clear and my liver looked normal. He also cleared me to do the emptying study, so I'll call in the morning to set that up.

But folks, I'm worried. I really don't need something else to go wrong.

3 years and family

2009-08-27T19:24:00.000-07:00

Yesterday was the anniversary of my coming to California. I wanted to mention that in yesterday's post but I was in such a hurry to post it and already dopey, that it just didn't happen. I know you're thinking, "Chris, you posted that entry at 7:04 pm." Well, the timestamp is 7:04 pm. Actually, I posted it just after 10 pm. I guess the timestamp corresponds to the time you open the posting window and not when you click publish. And no, it didn't take me 3 hours to compose the post. I'd actually written my first sentence when my sister called and we got to chatting. I really do love talking to my sister on the phone. We haven't always gotten along, but as adults we're best friends. We easily have 2 hour conversations about every topic under the sun. That's what happened last night, we talked about the advantages and disadvantages (primarily) of weight loss surgery, weddings, and Christianity all in one conversation.

Talking to her also made me wonder if I've ever written about my family. I know I've mentioned them in rants before, but never given you a clear profile of them. How many of you knew I am a middle child? I am. I used to call myself the "extreme" middle child because my sister is 6 years older and my brother is 6 years younger (he sometimes comments here). That's just enough years to ensure that we never had the same friends, never attended a school at the same time, and it puts us in different generations. We were raised by my parents in Gary, Indiana. We all left home as after high school, but I'm the only one who settled outside of Indiana. My is the only one to give my parents grandchildren, 2 girls and a boy), but Nilaja and I are hoping to change that in a few years. I was the only one to do 4 years of college and I graduated from Colby College in Waterville, ME in 2006.

Which brings me back to California. I haven't always liked living here, but it's grown on me. I actually couldn't imagine leaving here now. Especially since I finally have my health care organized. Oy, I can't even imagine what it would take to recreate this network. But I'll do it if I need to. I'll just groan the whole time!