Gilenya experiences wanted!

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

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.

It's Been a While

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.)

Still in bed

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

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.

Life is good.

I had a rough day. Woke up in striking amounts of pain and then after the workout, took a nap and slept until 11:34. I really hate when I sleep past 9 am. It's not that I have anything to be awake for, but I still don't like sleeping all day. The worst part is that I had to force myself to wake up at 11:34 and couldn't get out of bed until after 12. Argh!! I only managed to stay awake (mouth open staring off into space) long enough to eat and take my first dose of medicine. Then back to bed.

Normally, a day like today would have me depressed and worried that I'm having a huge set back. But other than being annoyed, I'm OK with it. I was obviously tired and overworked from all the cleaning yesterday, so I needed to sleep. Tomorrow will be better. Actually, this evening has already been better. I'm in an oddly good mood and loving it.

You know, usually when I'm in the moment and I feel the pain or I start feeling fatigued, I suddenly get really down and depressed about it. I forget that the symptoms, at least for me, fluctuate in severity. I may feel like crap today, but if I rest and take care of myself, tomorrow or the next day will be better. Now I just have to remember that during the bad times. Or keep working at not overworking myself and causing these bad days.

Easily Distracted.

So, I'm sorry that I haven't updated in over a week. I've been meaning to do it, but I discovered a jigsaw puzzle website (jigzone.com) and it has been getting all of my attention. Well, not ALL of my attention... I also spent last week watching season 2 of Mad Men in preparation for the premiere of season 3 and following a new food and medicine schedule. Basically, I've been distracted. The good news is that I'm starting to get back on track and updates should come more frequently, hopefully.

I've actually been quite busy on the health front. I had a follow up neurological appointment on August 7th and it went really well. I met with the nurse practioner again and I have to say that I really like her. I took a list of things to talk about with item number one being pain. She didn't have a pain specialist to recommend me to just yet, but she did tell me that I could increase my pain med, gabapentin. Apparently, the dose I was taking was just on the lower edge of what she felt was a good therapeutic dose for me. So, instead of taking 900 mg (300 mg capsules 3 times a day), she wants me to take 1800 mg. I'm slowly increasing the dose, as directed, and at this point I'm at 1500 mg. On Friday I go up to the full dose and I think we're finally getting somewhere when it comes to pain relief. You know, when I started taking the gaba, I was taking 100 mg, as needed. Hilarious.

She also gave me more Lyrica, which I'm supposed to take twice a day. However, I'm only taking it at night because it makes me sleepy. I was a little frustrated when I discovered that side effect, but it's working amazingly well when it comes to my insomnia. Speaking of insomnia, it was number 2 on the list. I told the NP that just like the lorazepam, the temazepam worked for a few days and then the insomnia returned, (though now that I realize the Lyrica makes me sleepy, I don't know if the temazepam ever worked). Instead of prescribing something stronger (which is what I wanted), she prescribed a sleep study to be done by my primary neurologist. It's a little frustrating to not get what I wanted, but I agree that there's a bigger problem and we need to figure out what that is instead of just medicating it. Unfortunately, the sleep study isn't until September 30th. Argh!

After we finished talking, she did her normal exam. Not much has changed, I still have decreased vibratory senses, minimal stiffness, and for the first time in years, a perfect visual field test. She was ecstatic. I showed her all the bruising and welts at my injections sites and she was shocked to see where I was doing them. She didn't have any suggestions for the reactions, but did tell me to only do them on the tops of my thighs. I'm finding these sites easier, but just as painful as the other places. From there we somehow started talking about my general non-MS related health and I told her that my primary care doctor is an idiot and I'd rather go to the ER than see her. The NP told me that I needed to have a good PCP and recommended I see one of her collegues. I see Dr. S on Wednesday and I'm super excited to finally have a competent PCP. I'll let you know how it goes.

My next appointment was last Monday, the 10th. In the morning, I woke up with a lot of pain. It was my usual non-MS pain and I knew I had to see my chiropractor. I've only been in to see her a few times since I stopped working for her and it's always a little awkward to go back, but I needed her help. As soon as I woke up, I texted her begging to be fit in. She was able to squeeze me in and I got to see her that morning. I wish her office was closer because I really need to see her more often. I felt so much better afterward. I still need a lot more work done though, and I'm hoping to start squeezing her in on the days I have to go to Berkeley for other appointments.

On that same day, I also had my follow up with the gastroenterologist. While I'm sure he's a great doctor, his office staff and bedside manner could really use some work. I hate feeling like I'm a bother to office staff. And it's not that I had any questions or needed anything special, but the person who brought me back seemed incredibly hassled to have to show me the way and take my weight. Nilaja was with me and the rudeness was so strong that she even asked if I could find a different gastro. I'm really hoping it doesn't come to that.

When we finally got to see the Dr., he seemed to listen to me and really take my complaints seriously. I was pleasantly surprised that he didn't come in with a predetermined diagnosis for me and he also didn't tell me what he "thinks" it is before getting the test results back. I appreciate that because I honestly don't need to spend any time obsessively researching and worrying about another condition that I may or may not have. Instead, he ordered an abdominal ultrasound (scheduled for Aug 20th), a bunch of bloodwork (I'll do that on the 19th), and some sort of controlled study to see how my stomach is emptying. Right now I'm waiting for my insurance to authorize the last test, but hopefully they'll do that soon.

When it comes to the medicines, he took me off of two of the stomach medicines and increased the Protonix. He didn't want to give me anything for the nausea, and recommended I split my lunch and dinner into two meals each (5 meals a day insted of 3). I tried that last week and although there wasn't any vomiting, I still had some nausea. Worst of all, timing the meals out and coordinating them with all the medicines made me neurotic. My entire day revolved around when I was supposed to eat and which pilsl I needed to take. I know that may sound silly, but there are days when I forget to eat or forget to take pills. And with everyone stressing how important it is to eat regularly and take all my pills, it put all my focus into following their orders. And since I don't have the ability to multi-task anymore, it literally meant that I spent the day watching the clock and was completely unable to get anything done.

This week is different. I'm back to three meals a day and I'm taking the pills at meal times. The key is to have breakfast when I get up, before I do anything else and I have lunch when Nilaja takes her lunch. It seems to be working since I've gotten all my pills in, ate breakfast and lunch, and was able to get some cleaning done, update here, and even make chicken stock. I like being productive. Now I need to get off the computer and go make the bed and start dinner.

"Just in time" appointments

Today is my followup appointment with the neurologist. I'm super excited to get back in there and discuss all the problems I'm having. In the past month, I think my pain and disordered sleep have gotten worse. Despite all the prescriptions that they have me on, I'm still suffering. I'm hoping that when it comes to pain I get an actual script for Lyrica (or something stronger) and that they set me up with some sort of therapist to help me deal with pain. On nights like tonight, I know that it's the pain keeping me awake and if I only had something to dull it a little, I'd be so much better off. I think it would also help my mood. Yeah, I know mood swings can be apart of MS, but most of my snapping and jerk behavior is exacerbated by the pain.

When it comes to sleep, I'm ready to try something designed for sleep, rather than a drug with sleepiness as a side-effect. Each time I try one of these drugs (usually anti-anxiety/anti-depressants like lorazepam or trazadone) they work for the first few nights and then they stop working. I tried taking them as directed, every night for the first week then every other night thereafter, but at this point they aren't working at all. And the worst thing is that when they do work, it takes about 2 hours before they kick in. So, if I don't take it from 8-9, then I'm up a creek. I mean, I usually don't realize I have insomnia until midnight or later and if I take a pill then, I'll sleep all day. Which means the same problem the next night. But, and here's the kicker, if I have insomnia and stay up the whole night, I am no more likely to sleep the next night, even with a properly timed pill. So I need something stronger, even if they only give me a few pills to break the cycle. Hell, two really good nights of sleep each week would be a thousand times better than what I have now! We'll see what they say.

I also finally have a firm appointment with the gastroenterologist set for Monday at 1:15 pm. Despite two weeks of calling obsessively, I couldn't get anything sooner. I'm actually pretty upset about it because I called and left messages 4 times a day for 5 days before I got this appointment. It was ridiculous that his assistant wouldn't call me back and I'm not looking forward to dealing with someone who can't return an urgent phone message. I completely understand if you can't get me in right away, but at least call me back and say that. She also wouldn't listen to me when I asked to get my scripts from the hospital refilled, so now I'm a week without my meds. Add on all the crap from last week and I might be looking at more drastic medical intervention. I still have my fingers crossed for all the medicine and hopefully he'll add something for nausea which would be a lifesaver.

Back to bed

I've been trying to get up the strength to do a proper update, but it just isn't happening. My body is on full revolt. In addition to my typical MS symptoms, I'm having a hard time keeping food/drinks down, my entire left side hurts, and I'm so tired that I can hardly keep my eyes open. I spent the last two days sleeping in bed and I can already tell that today will be another one of those days. I makes me want to scream! I can't wait for this cycle to break.

Revenge

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

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

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

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

Bad Day For My Body

After another sleepless night, I was not looking forward to running my errands today. I knew that even on a good day those errands would take a lot out of me, so I feared what might happen when my low tank was ran dry. Now I know. Basically, both legs are numb (with mild paralysis- if that's possible), tingling, heavy, and on fire, with occasional sharp pains traveling into my lower back. I am trying to stay mobile, but the numb feet make standing difficult and I'm relying on two canes to drag myself around. It's not pretty.

It all started after doing the blood test. For some reason when they draw blood my body revolts. I was waiting for the bus to take me to Berkeley and the numbness started. It was only in my toes, but I was freaking out. The last time I had a blood test, I had a really strange reaction where my legs were on fire and then I got hypersensitive everywhere. That was terrifying and I didn't want that to happen while I was alone or on the bus.

I made it safely to Berkeley, but I knew I was in trouble by the time I reached my second destination, my old office to pick up my supplements. It's been two months since I've been back there, but it still felt like home. I'm so glad it was my second stop because it gave me a minute to recharge. I was so tired and my pain level was rising pretty quickly. But, seeing the folks in that office (who are truly like family) lifted my spirits. I even got some help with my shoulder pain. I didn't stay long because I wanted to get to Nilaja so I could eat and close my eyes for a bit.

Once I got to her job, I was in bad shape. Nilaja helped me to her car and fed me some lunch, but I think I was already at the point of no return. Shortly after she returned to her office (I'd planned to wait in the car for the last bit of her work day and ride home with her), both legs went numb and I couldn't move them. I've had the numbness before, but never with any type of paralysis. I texted Nilaja who came out to check on me and she proceeded to poke and prod my legs until we were both sufficiently worried. We agreed that the best thing to do was remain calm and give my legs some time to recover.

Unfortunately, they haven't recovered. Getting from the car up to our apartment was by far the hardest thing I've ever done. I couldn't get my shoes on, so I literally dragged my new white socks across the garage floor. Since then, I've been in bed.

I'm honestly really afraid. I feel like I'm getting hit with everything right now and I don't know how much more I can handle. I'm so tired and in so much pain. I hope that I can walk tomorrow.

A new symptom and an older one getting worse

My newest symptom (or at least the symptom that I've recently identified as probably MS-related) is choking. Lately, I've been having instances where I go to swallow, the food starts to go into my throat, but I don't swallow. I choke. Then I start to panic, my eyes water, and I gag/cough for several seconds, before self-preservation kicks in and I'm able to calm down, close my eyes, and tell myself to swallow. And then it's over.

This has happened at least twice a day for the last 4 or 5 days and each time the situation is different. I'm choking with food, without food, while standing, while sitting, while watching tv, while cleaning, and even while singing. I've been choking so much that my throat is sore. I don't know how to make this stop or happen less frequently, but I am on alert.

I'm mostly optimistic about dealing with this because I can usually get my throat clear by just concentrating and telling myself to swallow. It seems so simple, but it's like when I start to swallow my brain forgets what it's doing midway and I just need to remind it. It's pretty scary, but I'm dealing with it. I also know how to do the Heimlich maneuver on myself, just in case that ever becomes necessary (and since the falls started I've been carrying my phone around the apartment with me just in case).

The symptom currently getting worse is numbness in my legs. Since last week I've been having these episodes where, on just one side, my baby toe will go numb. That's fairly normal, but over the next 30-45 minutes, my other toes will go numb and then the numbness will spread up my leg to my hip. I will remain numb from toe to hip for about 2 hours and then it disappears. It's really strange and painful. When my leg is numb, it feels heavy and achy. If I touch it or try to put weight on it, sharp burning pains shoot from the point of contact throughout my leg. I have no idea why this is happening or how to make it ease up. Luckily it only happens on one side at a time and the most I get an attack like this once a day.

Oh, and regarding my eye, I haven't noticed any improvements yet. I think the darkness has lightened a bit, but it's hard to tell. It is still painful to move the eye.

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.

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.

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.

Update: Depression, Suicide, Happiness

It’s been a long time since I’ve updated, and I’m sorry to leave everyone hanging. The past two weeks have been pretty hard for me, and every time I remembered to update I found myself too tired/dizzy/light-headed/achey to sit down and write. And even though I am currently exhausted and in pain, I think 2 weeks is too long to go without an update.

So, let’s see. In the last two weeks, I have been suicidal and depressed, started my Avonex injections, attended my first MS social group, felt incredibly happy, and started contemplating going on disability. Yes, it’s been two LONG weeks.

It’s hard to say when the MS-related depression started, because I have been somewhat depressed my whole life. I know that once the extreme leg pain started, pretending to be happy became harder and harder. Nothing is more depressing than be in so much pain that you can’t see straight and there’s nothing you can do about it. It was so bad that I would take melatonin each night and cry myself to sleep. In addition, the pain and stiffness in my legs got so intense that I couldn’t care for myself. I have always been very self-sufficient and suddenly I was a 24-year old woman who couldn’t even shower without assistance. On the days when I was home alone, I would sit on the couch weeping until my partner came home.

This is when the suicidal thoughts came in. Not just because of the pain, but because I felt that I was not living the life I’ve always wanted to live. I’ve never wanted to be stagnant or needy and all of a sudden, that’s what I was. All I could think was, “What kind of life is this?” I’ve fought so hard to get a good education, find a good job (that I’m really good at), find my soul mate, and find happiness, and now it’s all changed. Because of MS, I can’t enjoy my life. And I sat on my corner of the couch, drenching the arm with my tears, when Oprah came on. It was the episode with Montel Williams. No lie! I dried my eyes and started watching his tearful confessions. He is very open about his struggle with MS, depression, and suicidal thoughts. I looked at him describing the exact situations that I experienced and thought, “If he can do it, I can.”

It was as if an old light bulb in the back of my head started to flicker on and I remembered all of the things I had to live for and the promise I made to myself. When I started college, I told myself that I would never try to take my own life again. And I mean it just as much as I did 7 years ago. That’s why I started this journal in the first place. I know it may seem cliché and silly to have a “best life” blog, but I need this space to sort out the bad and remind myself of the good. While the crying hasn’t stopped and the depression still comes and goes, I am generally happier. And I count that as a victory.

Moving on… I have started the Avonex. My first independent injection was Thursday, March 26. I hesitated a bit, but I did it. Phew! The injection site is a little sensitive, but I didn’t have any major flu-like symptoms like I did the first time. I am counting this as a victory and I look forward to doing this every Thursday from now on.

Last Saturday, I attended the East Bay Lesbians with MS group. (There are groups for everything!) It was actually a lot of fun. I’m not usually a social person, but I had a good time talking with the ladies and learning about their ways for coping and managing symptoms. I was the youngest there by 20 years (I’m used to it), but they were hilarious women who all have a huge grasp on life.

I’ve had a lot of moments of happiness in the last two weeks. Yep, intermingled with the suicidal thoughts has been happiness. Other than meeting other EBLs with MS, I also bought a new cane, got “married,” and found a new place to live (with a pool). Yay!! I will post pictures of my new cane when I get a chance and take some decent photos. I purchased it from fashionablecanes.com and I love it! I plan to order another one for our Big Ole Fancy Wedding in July.

I’m sorry I didn’t say anything when it happened, but my partner and I filed the Domestic Partnership Paperwork and were legally joined on March 17, 2009. YAY! I took her last name and have been busy doing all the official name change stuff. It’s super exciting for both of us. We’re still having our big celebration in July and will count that date as our wedding date.

My finally happy moment is finding a new place to live that doesn’t have stairs or neighbors who smoke. The place we chose also has 2 pools which will be great for exercise. They also have a gym and I can’t wait to use a stationary bike to keep my knees strong. Our apartment is on the first floor and even has a patio. This should be really great.

This has gotten really long, so I’m going to end it now and write a separate entry about working and going on disability. This is a very new development and I may need to ramble a bit on the subject.

My legs, vision, insomnia

I'm sorry I didn't finish writing on Thursday or post anything on Friday, but I've been in the bed since then. It's my legs. The pain started on March 6 and continues to intensify. Even when I'm resting, the pain is nearly unbearable. Plus, there's numbness in my toes, pins and needles running up and down my legs, burning joints, stiffness, and they feel heavy. Since yesterday I've been using my salvaged college cane (without the rainbow ribbon), and I finally ordered a more stylish one since I will need to leave the house soon. Our need to get out of this place has moved from "would be nice" to "has too happen ASAP," so I wrote a letter to our landlady and hopefully she'll have a little compassion and release us from our rental agreement without penalty. If we had the money we would just buy our way out, but we don't. We don't even have the money to pay for the treatment... ::sigh::

And I should also mention my newest symptom. Last night, my eyes continuously went in and out of focus. This isn't really new, as it was one of the reasons I made the urgent appointment with Dr. Friedberg, but it's happening more frequently and I'm having longer periods of blurry vision. It started last night around 8 pm, we were watching tv on the couch and suddenly everything was blurry. I closed my eyes to try to reset my vision, but it would quickly go out of focus again. I wouldn't agree to go to the hospital last night, but I will make an appointment with my doctors and figure out if I need to be concerned.

To top it all off, I can't sleep. I'm always so exhausted, but the best I can do is sit still. During the day I try to get some physical rest, but I can't lay here all night. I've been taking melatonin each night to get some sleep, but I hate taking any sleep stuff so many nights in a row. Mostly I think it's the pain not allowing me to fully relax, but since nothing is helping the pain and it doesn't seem to be reducing on it's own, I guess my only option is the melatonin.

Today was probably worse than yesterday

I have quite a bit to say today, but I think I'm going to split it up into a few different posts so that things aren't too jumbled. Today sucked from morning to whatever time it is now. When our alarm went off and I opened my eyes, my first thought was "Oh my God the pain." My entire body hurt and it felt like my major joints were on fire. I wanted to scream and couldn't move. We laid there for another half hour before I forced myself up and into the shower. If I didn't have so much going on at work, I would have stayed in bed, but I forced myself there and tried not to scare my partner.

Of course, this meant keeping up with my new routine of driving to work. Bad idea because I nearly killed us. Yep, I was completely present and driving, then I get to an intersection and for a moment forgot where I was and what I was doing. Not only did I pull up too far, but I slowly started letting my foot up off the brake. Thankfully, my partner yelled my name in time to snap me back into reality. Yikes.

Once I got to work, the pain changed. Not only did I have the throbbing in my legs and the burning joints, I also had pins and needles running up and down my legs. Well, have. Constantly. And it's making me more depressed than I've been in a very long time. It's just hard to be happy-go-lucky when you want to rip your own legs off. Oh, and I walked a bit today and the brain rattling thing started up.

My only hope is that the medicine (whenever it gets started) will ease these symptoms so I can keep working. If this keeps going I may need to take time off, though I am in no way ready to do that.