Wednesday, April 29, 2009

Decision Made

I just spent the last 20 minutes crying myself to sleep. It didn't work. That was the last straw. I can't take anymore suicidal thoughts. I can't take anymore flu-like symptoms. I can't stand the insomnia and constantly feeling sick to my stomach. There has to be something better than this.

Two months ago I was so happy, but now I don't have the energy to do anything. I'm not myself anymore. I used to put on makeup everyday, even if I didn't plan to leave the house. Now there are days when I don't even shower because I'm too depressed and I think, "Who cares?!" I can't take it anymore.

I did my final dose of Avonex last week. I can't put that stuff in my body anymore. I just can't. I would rather be in a wheel chair than feel the way I do now. There is no reason for me to feel the way I do and it has to stop.

I know I'm rambling, but I just reached my breaking point. I want my old self back. NOW.

Tuesday, April 28, 2009

It has to be the medication

I'm pretty sure I need to switch medications. Since starting the injections, my mood has gone from occasional sadness to constant depression. Though I have felt this kind of depression before, it has been a long time since I was not able to pick myself back up. In the past, I would go for a long walk, treat myself to a movie, go to one of my favorite eateries, or even go shopping. Even during college when I was up to my ears in research, working to pay off student loans, and over-extended by all the clubs, I go the grocery store and stroll for an hour. It was such a pick me up.

I would do all these things now, except I'm too sick. On most days, I'm so tired that I have to sit while I brush my teeth. Going out on my own can be terrifying. On a good day, by the time I get to the corner, it feels like my brain is rattling and pretty soon the numbness and tingling starts. Before long, the pain gets to be overwhelming and I'm praying that I can get home safely. Plus, I'm still having sudden and temporary blindness, and occasional dizziness.

I was sick before starting the injections, but not as sick as I am now. And I'm starting to think that this isn't the general course of my MS. I'm at the point where if I leave the house one day, I'm practically bedridden for the next two days. How am I ever supposed to get back to work like this? (Yes, I eventually want to get back to work because we could use the money. Plus, I feel guilty about every penny I spend and I know that isn't healthy.) And even if I don't get back to work, I have to get to a point where I can at least leave the house. Or if I rest all morning and need to go downstairs to sign for a package, that I don't get so dizzy and that I lose my footing and fall on my butt (today, UPS).

At this point, I'm not ready to make a decision to stop or change, but I am starting to do all the research. There has to be better treatment options out there. Now I just have to find one that won't make me sick.

Monday, April 27, 2009

Free For All Fridays: Questions Answered!

I'm sorry I didn't get to this sooner, I had a heck of a weekend! But before I go into the walk, my GI issues, and all my stress, I should probably answer the questions.

The first question came from Latonya: Does your doctor have an idea whether you have relapsing-remitting MS, primary-progressive MS, secondary-progessive MS or progressive-relapsing MS? I understand MS is totally unpredictable - I'm just wondering if you have any idea on possibilities of remission.

Thank you for your question Latonya. For those who don't know a lot about MS, it has been defined in 4 different disease courses or patterns of progression. According to the National MS Society, these courses are:

Relapsing-remitting MS: A clinical course of MS that is characterized by clearly defined, acute attacks with full or partial recovery and no disease progression between attacks.

Primary progressive MS: A clinical course of MS characterized from the beginning by progressive disease, with no plateaus or remissions, or an occasional plateau and very short-lived, minor improvements.

Progressive-relapsing MS: A clinical course of MS that shows disease progression from the beginning, but with clear, acute relapses, with or without full recovery from those relapses along the way.

Secondary-progressive MS: A clinical course of MS that initially is relapsing-remitting and then becomes progressive at a variable rate, possibly with an occasional relapse and minor remission.

(For more information see the National MS Society Page on the Four Disease Courses)

In order to determine what course my disease is taking, my doctor will have to track the formation of new lesions, the change in severity of my symptoms, and the changes in my neurological functioning. Because I have only been diagnosed for about 7 weeks, we have not had enough time to track the disease progression. In the coming months and years we will continue to do MRIs and neurological tests to monitor the disease and determine if I will have times of remission.

I know that isn’t really an answer, but that’s all I have at the moment. As I know more, I will certainly share the information here.

The second question came in this morning from an anonymous commenter: Are you scared at all?

Thank you for the question Anon. The short answer is yes, absolutely.

When I first read this question this morning, it took my breath away. Actually, I still tear up just thinking about how I should answer it. I don’t know how well you know me Anon, but I am a control freak. Nothing scares me more than not being in control. This means, I need to have my feet firmly planted on the ground, I am self-reliant and self-sufficient, I need to know where I’m going, how I’m getting there, and how I’m getting home. It is important to me that I appear smart, efficient, mature, and controlled. I like to plan everything days, weeks, months, years ahead and do not like surprises at all.

The symptoms of MS have completely turned my life upside-down and no matter how much I want to be or try to be in control, I just don’t know enough about my disease yet. Having MS scares me. It scares me when I fall and am not sure how I’m going to get up. It scares me to venture out alone and not know if I’m going to have some sort of attack and end up stranded and sick. It scares me that one day I may not be able to sing, or cook, or dance. It scares me that I am no longer the person that my wife fell in love with and maybe one day this will all be too much for her to handle. It scares me that I’m 25 years old, currently unable to work, and not completely sure what will happen next.

But through all the fear, change, and uncertainty, I have to be strong. That’s my nature. I have to prove, even only to myself, that I can persevere. Before knowing that I had MS, I pushed myself to keep going and tried not to let the pain or neurological symptoms stop me. Having a name for it is not an excuse to give up and stop living. I will keep fighting and overcoming the fear will be my motivation.

Friday, April 24, 2009

Free For All Fridays. Ask me anything!

For the past few hours I've been trying to figure out something to write about. I am completely blank. I've received many requests for more frequent updating and I think I've found a way to remedy that. I've decided on a new theme for Fridays. Every Friday, I'll make a post like this one and you can ask me whatever you want (within reason**)! Just comment below and I will make a post over the weekend to answer all the questions. You can comment anonymously or logged in. Ideally, your questions will be MS related, but if you want to know more about my life, I'll be happy to share. So, start commenting!

**Obviously, I'm not going to give out personal information like my address or phone number! I have to keep my family safe.

Thursday, April 23, 2009

I Fell Again.

About 15 minutes ago, my wife rescued me from the bedroom floor. While she was at her photography class, I got up for more Aleve and fell to the ground. I literally stood up from the bed and toppled forward onto the floor. My feet were completely numb and my legs were too weak and tingly to hold me up. All I could do was lay on the floor and wait for help. It sucked. My wife was able to help me heave myself back onto the bed and I didn't hurt myself.

I can't begin to describe how depressing it was sitting on the floor. I could see the tv, I wasn't cold, or in any pain, but I still couldn't get myself up. What sucks more is that I should have known this was coming. I woke up so darn tired. I haven't been that exhausted upon waking in a very long time. It felt like I'd just taken a sleeping pill and was fighting against the effects. But instead of staying in bed and resting, I pushed myself to do my errands and even took the 75-minute bus ride to Berkeley. Now I'm in bed and all I can do is pray that I'm better and more rested for tomorrow. More importantly, I need to be better for the MS walk on Saturday.

By the way, it's not too late to donate to the walk. There are links on the right and at the bottom of the page if you'd like to donate. Anything and everything helps.

Wednesday, April 22, 2009

My biggest issue with MS: Incontinence

Usually, my biggest complaint here is about pain or neurological symptoms, because those have had the greatest effect on my life. Well, that's not true. I write about those symptoms because I can talk freely and without any embarrassment. However, my most difficult symptom is incontinence. It was actually the sudden loss of bladder control that sent me running back to my neurologist. A healthy 24-year old woman does not lose control of her bladder. Thankfully Dr. Friedberg agreed.

And through discussion with other MS sufferers, it's a pretty common symptom. Yet no one talks about it publicly and few wear adult diapers to protect against accidents. For example, I attend a monthly group for SF East Bay lesbians with MS (yes, there are groups for everyone!). At my first meeting last month, one of the women there mentioned that she finally went out and bought a pack of diapers. Although she appeared healthy (without cane or other visible symptoms), she began to tell the small group about her recent troubles. Like all the women there, she can hold her urine for under a minute before she begins to drip, trickle, or have a full emptying of her bladder. She typically uses sanitary pads designed for menstruation when she leaves home, but we agreed that they provide no protection. After three straight days of accidents, she finally broke down and got the diapers. Usually she wears them to bed, if she goes on a long trip, or to a fair or show.

What I found interesting about this entire conversation was the way her voice dropped when she talked about wearing them. Although the entire group talked openly about having accidents, the diaper portion of the conversation was whispered. We would rather risk accidents than wear a diaper.

No one wants to wear diapers. I'm sure I wasn't the only kid who swore they would die before getting back into diapers. Though, I could never expect to experience this at my age or begin to comprehend what being incontinent means. In my case, from the moment I get the urge to go, I have max 2 minutes to empty my bladder. Sometimes I get the urge and I have 30 seconds. And that's not 30 seconds to make my way to the restroom, that's 30 seconds to get to the restroom and get undressed. This means, that if I'm at work and the urge comes on, I have to go immediately. My bladder would not wait for me to finish a phone call or write an appointment card, when time's up, it's up. First it starts out with a drip/trickle and if I don't go soon, then the flood gates open.

My story is not unique. All of the other women describe it the same way. Yet we take our chances. When we go some place new, we immediately find the restroom and plan our activities around it. Even when I'm home, I make sure I drink during times when I'll be able to get to the restroom. The big problems occur at night. While we sleep, our legs go numb or get weaker, so when the urge to go comes on, we have to fight our legs to get us to the restroom. Even if you wake up and get out of bed in time, there's a good chance you'll drip to the restroom. For me, believe it or not, it is much more demoralizing to stand in your own restroom, a foot from the toilet, soaking wet, than to have it happen in a public place. I don't know why.

What I can tell you is that I've been thinking about trying diapers. Even though I take a pill designed for bladder control, I still have accidents. Part of the reason is that I often forget to take the pill. It only last for 3-4 hours, so even if I take it in the morning, I forget to take it again. Also, it makes me incredibly thirsty and even though I can hold my urine for up to 30 minutes, I'm drinking so much that I have to go more frequently and my legs don't like that. I will likely only wear them as my group member does, but that will mean less middle of the night anxiety. And less anxiety is one of my life goals.

Tuesday, April 21, 2009

10 Things Everyone Should Know About Me

In no particular order:
  1. I am stubborn. I rebel pretty much everything I'm told to do. Even if it's good advice or something I know I should be doing, being told what to do makes me tense up. I also listen to what's being said and reevaluate when there's no pressure.
  2. I love office supplies. Some of my favorite items include paper clips, notebooks (yellow legal pads and quad ruled steno pads), and black ink pens. I also love organizational tools like bins, dividers, and binders.
  3. I like the idea of crafting and creating things with my hands, though I'm not very good at it. I'm hoping to pick up a hobby to help keep my brain active.
  4. Money issues cause me the most stress of anything in the whole wide world. I think I'd rather be debt-free more than I'd rather be healthy. The state of the economy is not helping my peace of mind.
  5. When it comes to food, I prefer things that are heated and savory. I'm not a big fan of anything sweet and rarely eat bread, eggs, milk, lettuce, or syrup. Though I really enjoy french toast.
  6. I already miss a lot of the patients at my old job and feel awful that I didn't get a chance to say goodbye. I'm bad at it anyway, but it would have been nice to try.
  7. Lately, I've been crying while talking on the phone with Customer Service Representatives. I find it incredibly annoying and embarrassing.
  8. My greatest love is singing and I regret not doing it more often. I haven't sang in quite some time, even though it has always been an amazing release for me. I wish there was a place for me to sing. I'm also really worried that I'll lose my ability as the disease progresses.
  9. I hate being late. I hate it so much that I am chronically early to everything. It also means that I am seriously annoyed by tardiness.
  10. I clean obsessively. Clutter and disorder makes me so anxious that I have to clean before taking care of other things. Most people don't understand this but have learned to accept my obsession.


I'm currently sitting in bed watching American Idol, eating lemon sorbet with fresh strawberries, and feeling rather content. Yesterday was a pretty big day, it was my 25th birthday and my last day of work. Yep, the original plan was to stay until the end of the month, but this change of plans was probably better for everyone. I'm such a control freak and having someone else in my space, moving things around, and changing my setup was stressing me out. It was chaos and when combined with my MS-chaos, meant low productivity and me getting sicker. The downside of ending earlier is that our home wasn't ready for me to rest and I spent most of the day unpacking and cleaning. I got most of the stuff done and hopefully will be able to sit still next week.

Actually, I'm hoping to be able to rest by Thursday. I didn't properly prepare for my injection last week and had the night from hell! I was at home the whole day, so I didn't think to drink water. It's so important. When it came time to do the injection (I did it around 5:15 instead of after 6), I remembered to take something beforehand, but couldn't find the Aleve and opted for 2 Tylenol. That did not work at all. I took a second dose at bedtime and it was like I hadn't taken anything at all. I obviously underestimated flu-like symptoms, because I didn't think to really look for the Aleve and thought I could tough it out. I couldn't. I had a fever with sweating, chills, and body aches until 3 am when I decided I needed to sleep and that would only happen if I took an Aleve. I will never be too lazy to look for it again. Just 15 minutes after taking one little blue pill I was able to sleep.

I won't make those mistakes this week. I have to be 100% (or as close as possible) for the weekend. We have the MS walk on Saturday and I'm so excited. I'm pretty sure I'll have to sit it out thanks to my physical condition and this weather (oy the heat!), but my team, Chris' Crew, is still walking. If you would like to donate, please follow the links on the right and give $5, $10, or more to support the National MS Society.

Thursday, April 16, 2009


I just talked to my mom for 87 minutes and 42 seconds. That may have been the longest phone conversation we've ever had and I'm completely exhausted now. Not because she is exhausting, but because it takes more energy to sit still holding a phone than I thought. Oh, and I also have to talk so that she understands me. I guess I started talking gibberish and she knew that I needed to sleep. It was good talking to her though. We haven't really talked since I told her about my diagnosis and she had no idea that things had gotten so bad. She really listened and asked good questions.

We even laughed a bit and she shared her recipe for red beans with me, though she was a little frustrated that she had to repeat it several times in order for me to get it written down. That was a low point of the conversation for us, I think. She doesn't see me and we don't talk often, so trying to explain the fairly simple recipe to me and realizing I just wasn't getting it made all the stories so real. I could hear it in her voice when it hit her, but she slowed down and I got it all. It was all downhill from there. I'm having a hard time speaking my thoughts and forming sentences orally.

Actually, I've been having a hard time writing anything lately. Would you believe I've been working on this entry for 35 minutes? It's true. And sad.

Change of plans

I still haven't learned to expect the unexpected from my MS. At some point I'll learn to anticipate the waves of pain. I'd planned to do a "Day in the Life of Chris" photo journal today, but it's not gonna happen. I woke up feeling a little off and moving really slowly. We made it to the fitness center for our morning workout, though it was more difficult than yesterday. Actually, it was more difficult than most days. By the time we made our way back up to the apartment the pain was at an 8. Now I'm having waves of pain and tingling going from my feet to shoulders. My head is still fairly clear, but getting up at 4:30 am will probably start to weigh me down soon. So, instead of doing lots of chores and fun stuff, I'm spending the day in bed. I'll have to postpone the photo post until next week.

Friday, April 10, 2009

I Love My Wife

OK, I know that's an obvious sentence for most couples, but I don't think it gets said enough. Let me say it again, I LOVE MY WIFE. I realized just how much I loved her during a conversation with my big sister and little brother last night. The conversation turned to my upcoming wedding and my sister mentioned that another family member visited our wedding website, saw that I'm marrying a woman, and changed their mind about attending. Their homophobia isn't new or surprising, but it still shocks me that they can't get over themselves long enough to support me on the happiest day of my life. I realized last night, that despite all of the pain, inability to work, and even the bladder troubles, being with Nilaja has made me happier than I have ever been in my entire life. I don't think I ever thank her enough for everything she does and has done for me. Everyone likes to say how strong I am, but I would probably be balled up in a closet somewhere if she wasn't here taking care of me.

Honestly, I would not have my diagnosis if it wasn't for her. My last ER visit was in December. Nilaja took me to the hospital and sat there with me the whole time. When they diagnosed it as a migraine and sent me home, she was not impressed. Actually, it was the 6 days of suffering that convinced her that I was not suffering from a migraine. I, on the other hand, was not concerned because this wasn't my first atypical migraine or mysterious pain. Despite all of my reasoning and trying to explain my history to Nilaja, she continued to press me to have a follow-up with a neurologist. By February, I conceded and made an appointment, just to make her happy. I am so thankful that never let up and convinced me to pursue things further.

And now that we have it figured out, she continues to be there for me in every way possible. On most days I wake up and my legs are too weak or shaky for me to stand and she holds me up until I am able to walk. In the evening when I'm tired and weak, she makes sure I eat and get to bed. When my eyes get blurry and I can't see my hand in front of my face, she leads me wherever I need to go. Most importantly, when I'm in so much pain that my clothes hurt my skin, she makes me laugh and forget about the pain.

I guess I shouldn't be so surprised, she's always been an amazing woman. I always thought relationships crumble in crisis. Especially a relationship so new as ours. I received my diagnosis 4 days before our first anniversary. I half expected her to start pulling away as she learned what was happening with me, but her response was the exact opposite. We already had our wedding date scheduled for July 19, but she wanted to go ahead with the paperwork and not wait until July. When I started having trouble with the stairs in our apartment, she found us a new place to live and she even purchases a new bed for us when I started having trouble getting in and out of her princess bed. She did not hesitate to step up and take care of me, and even when I'm frustrated and unable to communicate, she remains patient and loving. I couldn't ask for more.

I hope everyone has the opportunity to find someone as wonderful as my wife. Or half as wonderful as my wife, because she is truly one in a million.

Thursday, April 9, 2009

4 down, countless to go

Today was a big day!

I just completed my 4th injection. It went smoothly. I think I finally have the process down and can just do it without hesitation. YAY! I've learned that if I ice the injection site before injecting and I let the syringe sit out for at least 45 minutes, I don't even feel it.

I also received my second shipment of syringes and didn't give it a second thought. I'm hoping this means smooth sailing from now on.

Obviously, I made it to work today. Initially, I thought leaving the house was a bad idea, but I'm glad I went. When I woke up, my feet were completely numb and even after 30 minutes of laying in bed there were no changes. By 6 am I knew I had to get up, so I forced myself up. I made it to the end of the bed before falling to the floor, this is a victory. I had to slide on my butt down the stairs again, I can't wait until Sunday when we move. My feet were better in time for my shower and I dragged myself to work.

After just a few minutes there, my eyes started getting blurry and my head was spinning. I wanted to go home. I'm sure the anxiety surrounding having the talk with my employer wasn't helping things at all. I was pleasantly surprised when she arrived and was very supportive. We've been a team for over 2 1/2 years and I've been afraid to disappoint her. So, it pained me to leave my letter of resignation for her and then wake up this morning still feeling like shit and not quite sure how long I could continue. In my letter, I offered to continue working through April doing 8 hours each day (I currently work 2-9.5 hour days and a 6 hour day) and work one 8-hour day each week in May. I was so stressed about making it through that and was not at all expecting her to suggest I work even less hours. I was shocked and grateful. Now I'm going to work 7:30-lunch (about 1:30) on Monday and Wednesday. This seems much more manageable, allows me time to teach her everything I know, and gives me time to rest.

I can't tell you how excited I am to rest. And to rest in a home without stairs or a bed too high for me to get into safely. YES YES YES!! The big move is on Sunday and it isn't coming a moment too soon. I never thought I would be this excited about moving, but the inaccessibility of this place has me too afraid to leave the couch. Oh and my Neuro can see me tomorrow so that we can file the paperwork. It will be so good to get that rolling so there isn't much of a lapse. Last thing I need is more money-worry.

Wednesday, April 8, 2009

Even further downhill

My pain has sky-rocketed. It started about 30 minutes after getting some blood drawn yesterday. We were walking toward the car when the pain hit. It felt like I was covered in lighter fluid and had just stuck my toes in a campfire. The burning pain traveled rapidly up my body and even my eyes hurt. In addition, I had pins and needles running around my body and periods of sharp shocking pain going up my legs and from shoulder to fingertip.

But the worst part was when the hypersensitivity started. We were on the highway when it happened and I thought I was dying. Anything that touched my skin felt like sand paper. Well, not anything. When I tried to wash my hands, it felt like acid and I nearly lost my lunch.

That extreme pain has calmed quite a bit, but I still hurt so much that I'm nauseated and dizzy. I tried to go to work this morning, but after an hour of sitting in my chair, I was doubled over crying in pain again. Once my eyes went blurry and my typing became unreadable, my wife came to get me. Things are so bad today that she didn't feel comfortable leaving me home alone and she took the day off to care for me. I am so grateful because I there is no way I would have been able to care for myself today.

I also finally made the decision to listen to my doctor and stop working. These episodes are becoming more severe and are completely unpredictable. I need to rest and stop risking my health this way. I am just now starting the application process.

Thursday, April 2, 2009

And now the right

Sometime during the night, something happened to my right leg. It didn't hurt while I was laying down, it just felt weird. I ignored it. When morning came, I did my mobility self check where I wiggle all my limbs before sitting up. Everything moved and there was the usual numbness in my fingers and toes, so I prepared to hop out of bed. My left leg was hurting as usual, so when I went to get out of bed I led with my right foot allowing myself to gt my balance before shifting any weight onto my left leg. Today was different. As soon as my right foot touched the floor I felt an intense, sharp, burning pain shoot from sole to hip. It was probably the worst pain I have ever experienced in my entire life. Since I only had one foot on the floor, I stubbled forward into the wall and caught myself on the window ledge before hitting my head. My poor wife, who was still sleeping, jumped up and rushed to my side. I was in so much pain and so disoriented that I couldn't even explain what was going on.

I've been really determined not to miss a lot of work, so I tried to make my way to the shower. That's when the real problem hit. Our current apartment has stairs from the main level of the house up to the bedroom. Before MS, I loved having the division. Now, those 5 steps have brought on a lot of pain (falling) and anxiety (fear of falling). When I got to the stairs this morning, I couldn't go down them. I stood there trying to balance myself on my throbbing left leg and my cane and knew I couldn't safely go down. Just looking at the stairs made my heart race, and I had to shuffle back into the bedroom to prevent a panick attack.

So, I'm standing next to the bed trying to catch my breath when Nilaja (my wife) looks at me and says, "OK, I'm gonna carry you down." All I could do was laugh. Though I don't doubt her strength, I am taller and heavier. There is no doubt in my mind that if she managed to lift me, we would both end up falling down the stairs. And probably not as gracefully as I could do alone. I opted to gingerly sit on the floor and scoot across the carpet and down the stairs.

I had to forego my morning shower because there was no way I could step into the tub and stand there the whole time. I got dressed and did my makeup at my desk, as usual. The next major event occurred when it was time to leave the apartment and navigate the steep flight of stairs at the front of the apartment. It probably wouldn't have been so difficult if I could figure out how to use my cane with my right leg. This is the first time I've ever had an injury on that side and even though I know how it should go, I couldn't make it work. I had the hardest time trying not to put any weight on my right leg while holding my cane on the right.
Being Thursday, I only had a half day of work and could get in to see my neurologist, Dr. Friedberg. He is such a great doctor and really makes me feel heard. I told him all about my pain and vision issues. The short episodes of blurry vision worry him, though he did not have a solution for that yet. He wants me to keep track of te episodes and trying to figure out if something is triggering them. Luckily, he thought I was ready to restart the nerve pain blocker. Thank goodness! I've already taken one in hopes of dulling this right leg pain and get back to walking.

Dr. Friedberg also made it very clear that he supports (maybe even suggests) I take some time off to rest. I declined his offer for disability paperwork, but after the episode on Tuesday and the episode today, I'm started to look at this more seriously. I honestly don't want to stop working, I don't even think I could handle sitting still for more than a day, but I am tired. I keep trying to rest up and recuperate, but it's impossible. Even if I only do the necessary daily tasks (taking a shower, cooking, trips to the restroom), by bedtime I can't see clearly or walk. I think I'm gonna try to tough it out until after we move and get resettled. Taking time off now won't give me a chnce to rest. I'll revisit this subject in May.