Sunday, May 31, 2009

Overall a good day

I'm currently experiences a very scary symptom. For over a week now, I've had pain behind my eyes. Dr. Friedberg said that it was a common MS symptom and nothing to panic about. Then I wake up yesterday and my eyes felt weird. They kept watering and felt like they were covered in a thick layer of goo. My vision wasn't compromised, they just felt weird. Then in the afternoon, while we shopped for household items at Target, I started having weird feelings. It wasn't anything in particular, I just felt odd. As we're heading to the checkout lane, I saw a flash and then a black void appeared in my right eye. It's still here. I can see through the eye, but there is a black line from the upper inside corner to the lower outer corner. This scares me because the feelings I had yesterday and today are the same as when I loss vision in my left eye (which has gotten better, but never returned). I'm trying not to panic, but if my vision hasn't improved by tomorrow morning, I will start making emergency appointments with whoever can see me.

Despite all this craziness, I'm having a really good day. I woke up really early this morning to finish cleaning our apartment, then got all snazzied up to meet my BFF for coffee. I didn't drink any coffee (I'm allergic, not to caffeine), but it was really good to see her and catch up. Unfortunately, I couldn't stay long because I had to meet with the Betanurse today at 1 pm. We do have plands for the near future to see "UP" and I can't wait!

Speaking of the Betanurse, she arrived right on time and was gone in less than 30 minutes. There really wasn't much for her to do because Betaplus send a very detailed video with the training kit and after watching that, I knew how to do it. Although there is some hassle when it comes to mixing the medicine, the actually shot was easy-peasy. I didn't even feel the needle go in and I didn't have to use the autoinjector. I guess all the bragging about having the "thinnest needle in MS treatment" is worth it. I don't have anxiety about future injections.

Now let's just keep our fingers crossed that it doesn't make me sick.

Friday, May 29, 2009

Free For All Fridays: Questions Answered

From the post on May 15:

Question 1 - Carla said... Hello, I just found you on http://www.worldmsday.org/ and I'm also in the Bay Area.

Anyway, I am wondering what was your first symptoms of MS? I was just diagnosed a few months ago and always curious how it all began for other people.

Hi Carla, thank you for your question and I'm so sorry for the late response. I've been having symptoms for many years. I was diagnosed in March of this year and at the time I was experiencing a myriad of symptoms. They included numbness in my hands and feet, fatigue, pins and needles, dizziness, bladder dysfunction, headache, poor coordination, headache, weakness in limbs, vision loss and occasional blurry vision, and memory loss. Most of these symptoms I have on a daily basis with differing degrees of severity. Most days the fatigue and numbness are my main symptoms.

Would you mind sharing what your first symptoms were and how you're doing now?

Questions 2 - Anonymous said... Have you picked out a wedding dress yet? Come on, you don't want all the questions to be about MS, do you?

Oh Anon, I welcome non-MS questions, especially when they are wedding related. I purchased my dress in September, just a few weeks after we became engaged. I wasn't really looking for a dress that day, but we were out and I decided to give it a try. I didn't really like the first dress they brought me when it was on a hanger, but I put it on. It's a white dress with red details (Nilaja is wearing a red dress with white details). It was so beautiful on me and fit perfectly. I tried on a few other and none of them looked nearly as good. We actually purchased the very first dress and it's been in my closet since. The dress is so perfect that it doesn't need any alterations or hemming. After the wedding, I promise to post pictures of the big day. I don't want to do it now or link to the website because I want our guests to be surprised.

Long overdue, but I'm back

It’s been a long time since I’ve written here. I’m sorry for that, it’s just that life has gotten hectic for me. Between being ill, exhausted, anxious, and trying to re-focus on wedding planning, I didn’t have the energy to write a proper entry. But now things are starting to level out and I hope that I'll be able to write more regularly again.

Health – I’m feeling a lot better, but I’m still extremely tired. I’m pretty sure I had a flare-up last week, which started on Tuesday evening with burning pain in my legs, pain behind both eyes, and dizziness. That continued into Wednesday, and by Wednesday evening my legs were burning so badly that all I could do was cry. My eyes also went blurry and by the end of the evening, I couldn’t make out my own fingers in front of my face. It was scary, but temporary. I got a last minute appointment with Dr. Friedberg last Friday and he confirmed that everything I was experiencing was MS-related. He told me to try to take the gabapentin more often to reduce the pain and REST. I’m still having a problem resting. I’m always so tired that I start to mistake it with laziness and end up pushing myself to keep going when I should try to take a nap. ::sigh:: One day I will learn to rest.

Medicine - Another good thing about seeing Dr. F was that we decided on my next injection therapy. Although I wanted to stay away from the interferons because they all list depression as a side effect, he strongly urged me to try Betaseron. We looked at the research and side effects and I finally agreed. He reassured me that if it doesn’t agree with me, I can change. So, I signed the paperwork and he sent off the information. I can say that the Betaplus people are incredibly fast because my start up kit and first month of injections arrived yesterday. I also spoke with my Betanurse today and she’s set to do the injection training on Sunday afternoon. Unfortunately, they don’t do the free first month, but the rep automatically entered me in their financial assistance program, so I’ll pay $50 a month. I think I can manage that.

Money – I’ve been incredibly money stressed over the past month. Because of the disability check timing, I made it through the whole month on only 3-days worth of payments. You can probably imagine what’s been going through my head with rent coming up and no check every time the mail comes. Luckily, one arrived today and we went directly to the bank. Phew, I’ll be able to sleep tonight.

Friends – I am happy to report that I’ve been seeing friends more often lately. Yay! It has really helped my mood and has meant more days in street clothes. Thanks to my friends I learned to crochet hats, visited a corset shop in the city, and reconnected with an old friend. I’m looking forward to more of this. Next time I need to spread it out some so that there is more time to rest between visits.

Fatigue – I’m so tired folks. More tired that I could ever imagine. And it just hits me without warning. I’ll wake up feeling well, get dressed and ready to go, then suddenly I feel like I just took a double dose of sleeping pills. Or, I wake up and I’m too tired to get dressed. I never realized how much energy it takes to shower, do my hair, or even brush my teeth. I’m at the point where it takes me like 2 hours to get dressed because I have to sit down the whole time. It makes me sad. Oh, and despite being completely exhausted, I still have insomnia.

Housing – I like the new apartment. It’s small enough for me to clean, there’s room for a garden, there’s a fitness center so I can stay in shape, and there are pools (even though I haven’t been in them). I don’t like that they are remodeling the apartment directly above us. I hate that they didn’t tell us that it was going to happen. I was so angry when I realized what was going on. From 8-5 everyday, there are random periods of loud construction noise. Usually, this noise starts up at 8, stops for a few hours, and then goes from 1-5 (when I try to lay back down to nap). This means no daytime napping. ::sigh::

Wedding – Last weekend we met with the florist at our venue. The appointment went well and she sounds like she’s right on track with what we want. We’ve started getting response cards and gifts already, so the weight of the upcoming event is starting to weigh on us. We have less than two months left and time is moving extremely quickly. I hoping to start working on the favors/place cards soon. Today we took Nilaja’s dress in for alterations and we’ll pick it up in a few weeks. My dress doesn’t actually need any alterations, but we will need to take it in to be bustled. I’m really excited!

I'm sure I'm missing something. Please feel free to comment here if you have questions or want more information. I'm not going to post a Free For All Friday post today, but may start that up again next week.

Wednesday, May 20, 2009

back in a bit

I'm in the middle of a flare-up. I'll be back when I'm better.

Friday, May 15, 2009

Free For All Fridays: Ask me anything!

Ooops, I've been so busy that I almost forgot to post today.

It's Friday and you can ask me whatever you want (within reason**)! Just comment below and I will make a post on Monday 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.

Tuesday, May 12, 2009

No real post today

Because I'm not doing too well. Since last week I've been pushing myself. Something someone said really got to me and I guess in my efforts to be "normal" and spend more time out of bed, I went to far. I am so tired that I'm crying or maybe I'm crying from the pain and spasticity. I'm going back to sleep now. I have plans for the rest of the week and am hoping that I won't have to cancel. I also just received invites for this week and next week and I want to say yes. Cross your fingers for me!

Meanwhile, I need to keep telling myself: Chris, only you can manage your disease. Only you know what's best for your body. Stop letting people cloud your judgment. Do what is best for you or you will pay.

Monday, May 11, 2009

Free For All Fridays: Questions Answered

Good Morning Lovelies! I've had an exhausting but fantastic weekend. Before I regale you all the fantastic details, I should answer the questions from Friday. There were two questions from one anonymous commenter: Do you feel isolated or like people treat you differently? Do you have the energy to see friends anymore?

Yes. Yes. And yes! My thoughts are pretty scattered on how to answer this one. I've always been a loner and I like to keep my social circle small. I'm also a homebody and value time alone. I've always had a mix of concentrated social interaction with a few days to clear my head alone. For example, in college I had classes and a job in the Admissions Office during the week, and on the weekend, I stayed home. On rare occasions I would go to social events, but I typically liked to spend my weekends alone or with a friend or two. This trend remained after college and having a job where I worked 3-4 days a week was perfect. Even though the work was hard and the hours were long, I had time to satisfy my need to be alone and even spend time with friends.

So, I never expected to feel this alone and isolated when I stopped working. I never knew how much I needed to interact with people on a daily basis. Even just getting out to go to a restaurant or sit in a movie theater helps, but for a while there, I was too sick to do that. There is nothing worse than spending day after day with only a few hours of human contact. This trend has made me feel lonelier and more isolated than ever before.

Regarding part two of your first question, people definitely treat me differently and I have become different. I'm not as self-succient and strong as I used to be. I often need help and I think that's difficult for people to see. Not that they aren't willing to help, but it's hard to be around someone who's sick. Whether it's a chronic illness or something acute like a surgery, we treat people who are ill (or not completely healthy) differently. We don't want to make things worse or even see someone we love in pain. It can be hard to control emotions and reactions when we see our friends hurting and some may decide to just stay away. I understand that. As much as I need and want to be around people I don't want to put anyone in a situation that'll make them feel uncomfortable or stressed. I also can't promise that I'm going to be any fun or that my symptoms will remain in check for the whole visit.

But I do want to see/chat/hang out with friends. It really helps my mood and even small interactions go a long way. I don't always have a lot of energy to go out, but people are welcome to come visit. We could watch a movie, do some crafts, or just sit and stare at each other. Hopefully, now that the Avonex is getting out of my system and I'm allowing myself to rest when I need to, I'll have more energy for outings. I'm also learning to plan my week in a way that anticipates fatigue and other symptoms. (I have a lot of plans this week and I'm hoping that my new system works.) And fingers crossed that the new medication (whatever we choose) just makes things even better.

If you, anon (or anyone else), want to hang out with me I have four requests: 1. We have to talk about something other than MS. 2. We have to make plans so I can rest and prepare. 3. If I ask for something or need something (like a restroom or help standing), please know that it's usually an urgent need. 4. Please don't treat me like I'm fragile. It's best for me to manage my own condition and if you try to do it for me, there will be friction. If you're OK with that, message me and we can plan a time to hang out.








Friday, May 8, 2009

Free For All Fridays! Ask me anything.

Last Friday was also successful, so let's keep it going. It's Friday and you can ask me whatever you want (within reason**)! Just comment below and I will make a post on Monday 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.

Attn LJ readers: A little housekeeping

There are a bunch of people that read my blog through Livejournal. Hi guys! Anyway, I've been wondering if I get some sort of notification when you comment there, I don't. I just wanted to let you know, in case you comment on one of my posts and I don't catch it to respond. I try to remember to check the recent posts for comments, but if you are back reading and commenting, I may not see the comments. To insure that I see what you say, try to leave comments on the actual blog. Anything written here is emailed to me.

Of course, if you are interested in reading through LJ, just go here.


ETA: Big thanks to Tidesong. I can go to each individual post and ask to be notified if someone comments. I completely forgot about that option. I'll do that from now on. So, no worries.

So tired.

I'm tired today because I spent most of yesterday walking. I started the day out with 25 minutes on the treadmill and then when I couldn't go back to sleep, decided to leave the house. I got all dressed in my usual costume (black dress, colorful tank top for modesty, black flats, jean jacket, colorful scarf, shoulder bag, and cane) and headed to the bus. I rode all the way over to the top of Solano Ave in Berkeley to have lunch at my favorite Indian restaurant. After lunch, I decided to go to the other end of the of the street to see a movie. I should have taken the bus down, but ended up walking.

Now, I know what you're saying, "Chris, what were you thinking?" Well, I was thinking that if I walked I could pick up some art supplies and then catch the bus the rest of the way. I did get some watercolors, oil pastels, sketching paper, and watercolor paper, and on my way to the bus stop, the bus passed me. I was frustrated. I checked my watch and there wasn't enough to wait for the next one and get to the theater on time. So in my flats, I walked from one end of the street to the other (over 1 mile). Luckily, it was all downhill. But that didn't stop my legs from burning and my brain from rattling.

I made it to see the movie, Sunshine Cleaning, with 3 minutes to spare. After the movie, I took the bus to Nilaja's job and got a ride home with her. I was exhausted and nauseated by the time I got to her. It was awful. But after drinking lots of cool water and resting in the car, I started to feel OK again. Then we got home and I had to walk from the car up to the apartment. Just standing up sent the fire up my legs to my hips. I wanted to scream. That burning is the worst.

Of course I made it up to the apartment and crawled right into bed and took a gabapentin. I was in bed most of the evening except for the few hours I sat at the table being artsy. It was a lot of fun and I even did a watercolor of some pears. I'm not very good, but it was quite relaxing. I still haven't figured out the oil pastels, but hopefully I will soon. I also want to get colored pencils and some other paints to practice using.

Today I'm going to rest. I'm really worn out from yesterday, but I need to get my energy up for grocery shopping tonight. I would love to take a nap, but everytime I fall asleep the phone rings. And I'm a little too tired today for sales calls.

Wednesday, May 6, 2009

I'm bored

I come to you today asking for help, I need things to do. Currently, I get up early in the morning, try to nap (always unsuccessfully), clean, watch lots of tv, maybe take a shower, eat 2 or 3 times, and go to bed. I'm starting to worry that my brain is going to mush and after what I spent for college, I can't let that happen. But I'm running low on ideas.

So I'm asking you, dear readers, for ideas. I currently watch an insane amount of tv, so things like movies or tv shows are not what I'm looking for. I also don't have much money, so ideas shouldn't cost much (unless you are willing to sponsor me and I'll gladly provide my PayPal address) or have elaborate setups (we don't have any storage space in this apartment). We are pretty close to Laney College and I'm thinking about taking a ceramics or cooking class, but am a little worried about logistics and timing. I'm also open to book recommendations, websites, and community programs.

Thanks in advance for all the suggestions!

Tuesday, May 5, 2009

Not giving up, mourning my old self, and finding a new normal

I'm in mourning. For many years I've denied I was sick and now that there is no question that something is wrong with me, I have to start accepting the new me. The MS me.

Initially, I intended to live my life post-diagnosis, just as I'd lived pre-diagnosis. The major problem with doing that is that the last few months before receiving my diagnosis were not "normal." My last major relapse was the first Wednesday in December 2008. It marked the last time I worked a full week and the last time I would be able to ignore my symptoms. The hardest part about going to the ER that time was not knowing what to tell the doctor and what was normal. Many of the symptoms that I've experienced full-time since December, started many years ago. I remember having this leg pain in high school and again in college after taking a dance class (which lead me to an orthopedic surgeon, 13 months on crutches/cane, and knee surgery). I've had numbness in my hands since high school (tendonitis) and all throughout my time at Colby and now in California (carpal tunnel, arthritis). Even the left eye blindness isn't new, that happened in August 2005.

What is new, is my acceptance and acknowlegment that I'm sick. And that I'm not making this up. (Oh, and the bladder dysfunction, which sent me running back to my neuro's office in February, that's new.) The question then becomes, if my symptoms aren't new, why do I seem so much sicker now. Well, three reasons.

1. For the past 6+ years, I've sought medical help and each time been told that there's nothing wrong with me. Everyone thought I was a hypochondriac and it began to hurt my friendships and relationships. So instead of talking about it, I ignored it. Even when it got really bad that I couldn't hide it, I would resist medical treatment because I couldn't stand having people think I was making things up. Until I got really sick in front of Nilaja and she wouldn't let me ignore it. As much I wanted to accept that I was having another really bad atypical migraine, she didn't believe it and pushed me to follow-up with a neurologist. Since then, I've been more honest about my health than ever before. What I've endured every day for the past few years is shocking and mean seem impossible to anyone who doesn't have a chonic illness, but there are tons of people wiht my story. We endure because we have to, until someone tells us that we have to slow down if we don't want to be crippled. That's where I am.

2. There is no question in my mind that the Avonex was making me sicker. Not just emotionally, but also physically. I don't know the mechanisms that make it an effective treatment, but it did not agree with me. I need to wait for 5 weeks of medicine to get out of my system before before I can really gauge my progress. I would like to find a new one and hope that it doesn't make me sicker. I also have to remember that no matter what medication I take, they do not cure the disease or send you into remission. It's like being in a moving car with no park or reverse gear. All I can do is speed it up or slow it down. The disease modifying agents slow things down. The disease doesn't stop progressing, but if the medication works, I may be able to slow the progression down enough to avoid complete disability.

3. The third reason that I think I'm sicker now may be due to the natural progression of my disease. This seems unlikely if you think of the disease beginning in March 2009. Especially if you believe I was healthy in February. Or even if you think of me being healthy in November, my current levels are pretty shocking. But I think of my disease in a broader scope. I count all of my major episodes- Hospital visits Dec 08, Jan 07, Dec 05, Jul 04, Oct 03; vision loss Aug 05- along with the doctor visits for numbness, tingling, muscle pain and weakness, and there's evidence of the disease from at least 1999-2000. So when I think about the disease in these terms, it's not so surprising that I'm where I am or that some of my symptoms are advanced.

But this doesn't mean that I'm going to sit back and let the disease take over. Not at all! I'm still fighting just as hard as before, but I've decided on a new goal. I can't keep fighting to get back to the normal I had before any symptoms showed up. That normal disappeared over 6 years ago, and it's hard to realize that I will never see that again. What I need to do now is find my new normal. Figure out what my very best is and work to maintain that, because no matter how hard I try I will always fail at reaching the old normal. I don't like failing, it makes me depressed, so I am making new goals for myself and will stop allowing the depression to be a weight on my shoulders.

Now I just need to learn how to fully manage my symptoms...

Monday, May 4, 2009

Walk MS: Alameda 2009

I promised I would write about the walk, and I'm finally getting around to doing it! The walk was a success. My team, Chris' Crew, collected $1290 in donations. I am so proud of them for all their hardwork and for coming out and walking. Awesome.

The team met up around 8 am for the walk. After getting registered and putting on our official t-shirts t-shirts, we did some light catching up before doing the group stretch. There were tons of people there for the walk and it was nice looking around seeing other people with neon green stickers on their chests. The stickers were for people with MS and you could write in your date of diagnosis. There were sticker wearers with canes, without canes, with walkers, and even some in wheel chairs.

The group stretch was led by a woman who's been diagnosed for 25 years. I don't think she did any of the actual stretches, though. I made it through most of the stretching, but once the dizziness hit, I chose to stand still with my cane. Then we started to walk. We were moving quickly at first, but soon had to slow down a bit. My brain was rattling from the beginning, but I wanted to finish, so we kept moving. Honestly, the walk was pretty hard for me. My legs weren't too weak or wobbly, but my head was acting up. I had lots of dizziness, light-headedness, numbness, and tingling running through my body. When we got to the half-way point, I made the mistake of sitting down, which by body took as a sign to freak out. Moments after we started walking again, my vision went blurry and I was like that for the rest of the walk.

But we finished. All of us. It was a good feeling to complete and prove to myself that I can still do things when I set my mind to it. (All it took was a short nap to get myself back up to par) I'm excited to do it again and hopefully raise more money for the National MS Society. Thank you again to everyone who donated and sent words of encouragement. The walk was a great success.

Free For All Fridays: Questions Answered!

I've decided that I'm not going to push myself to update on the weekend. I'm sorry to disappoint, but the pressure is too much for me. So, FFAF questions will be answered on Monday. Yay!

OK, I'm going to focus now. There were two questions left on Friday. The first was anonymous: What are your symptoms and how severe are they?

Good question. My symptoms vary each day and throughout the day. They include: burning-achey pain in my limbs (especially my legs), nausea, dizziness, fatigue, numbness, pins and needles, weakness (especially in my limbs), headache, loss of bladder control, spasticity, insomnia, constipation, blurry vision, acute vibrating sensation all over my body, and poor muscle control. Some of the worst symptoms are things that happen in my head, they are more feelings I get and are difficult to describe. For example, I'll feel like I am sitting next to myself. It's a weird light-headed/confusion/spatial distortion sensation. I like to call it "swimming." See, I don't know how to swim, so when I'm in the water I have a hard time controlling my body, making precise movements, and end up floating. That feeling comes on suddenly and can last for hours or days. Another example of these weird sensations is what I call "brain rattling." After walking a block or two, I start to feel like my brain is rattling against the back of my skull. My brain isn't actually moving, but that symptom has scared me for years.

The severity of these symptoms also varies greatly throughout the day. I've started describing my symptoms in 5 categories (pain, neurological, stress, fatigue, and mobility) on a scale of 1-10 with 10 being the worst. It's all really subjective, but has made it easier for my wife to quickly gauge how I'm doing when we're not together. Typically, 6 and below are manageable levels and don't effect my ability to carry out daily life, but all 6s make a difficult day. Currently, my levels are p-7, n-5, s-4, f-8/9, m-7. I'm having a terrible time sleeping, so I haven't been able to fully rest and rejuvenate. If I stay in bed today, take a nap, and do some stretching, I should be able to get my pain, fatigue, and mobility in check. Since December, I would describe my levels as being moderately high, but I'm learning to manage my symptoms and keep everything at a manageable level. Some symptoms, like the brain-rattling, are situational, but most are always present at varying degrees.

The second question is from Christian: What is your usual course of treatment for MS?

I wasn't sure if Christian wanted to know how I treat my MS or how MS is treated. So, I'm going to try to answer both ways. Let me first say that there is nothing "usual" about MS. Everyone exhibits their symptoms differently, manage symptoms differently, and choose (or not choose) to do one of the injectable treatments. I could try to detail all of the ways that people can treat their MS, but the National MS Society has done a great job here and I really don't need to reinvent the wheel.

When it comes to my personal methods for treating my MS, I have focused on resting, exercising, eating (more than one meal a day), taking a load of vitamins (vitamin D, fish oils, iron, calcium, vitamin C, vitamin B12), I take a little blue pill called Oxybutinin for bladder control several times a day as needed, gabapentin for control of nerve pain as needed, and until last week I was also doing a weekly injection of Avonex, a disease modifying drug designed to slow down the progression of the disease. This combination (minus the
Avonex) has been working pretty well for me. Even though I don't feel as good as I did before my last exacerbation in December, I do feel stronger than I did before the diagnosis.

Oh, it just occurred to me that you may be wondering about a cure for MS. Currently, there is no cure for MS, so we focus on managing symptoms and doing what we can to slow down the disease and prolong mobility.

---
Phew, I hope that answered your questions without too much confusion. I've had about 4 hours of sleep, but wanted to get this done before sleeping all day and not getting to it at all (like the MS walk which I haven't forgotten about). Thank you for your questions and remember, you can comment on any post, you don't have to wait until Friday to comment.

Friday, May 1, 2009

Free For All Fridays. Ask me anything!

Last week was successful, so let's try it again. It's Friday 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.