Hi Folks,
This is Nilaja. Chris wanted me to let y'all know that she is back in the hospital. Around 7:30pm last night she called me into the bedroom and said "I can't see." Her vision has completely left her. The neuro on call told her to go to the emergency room and she was admitted into the hospital around 12:30ish.
Right now we don't know how long she's going to be in the hospital. They are running a lot of test and we'll know in a day or two the results and the course of treatment.
Chris is holding up well especially when they give her pain medication and she can sleep. Feel free to call her on her cellphone (text messages and emails are nice, but she can't see them). She has the cellphone with her at the hospital.
Friday, September 25, 2009
Thursday, September 24, 2009
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.
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.
Wednesday, September 23, 2009
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.
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.
Wednesday, September 16, 2009
30 Things
Thanks to one of my favorite blogs, Definatalie.com, I was alerted that it is National Invisible Chronic Illness Week. Multiple Sclerosis is often described as an invisible illness, especially for sufferers who don't use mobility aides. To commemorate this week, I've decided to complete their "30 Things" meme. Enjoy!
30 Things About My Invisible Illness You May Not Know
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Multiple Sclerosis
2. I was diagnosed with it in the year: 2009 (March 5)
3. But I had symptoms since: at least 2002-2003
4. The biggest adjustment I’ve had to make is: There are several. Learning to listen to my body and not dismiss random sensations. I have to accept when I'm tired and not get down on myself when I reach my new limits. Being ready for unpredictable bladder control. All of the cognitive challenges are giving me a tough time. I feel dumb and spacey, especially when I can't form sentences or remember things that should be easy to remember. I've also lost some really close/meaningful relationships since getting my diagnoses and it's been hard adjusting to people seeing/treating me differently.
5. Most people assume: People often see me with my cane and assume I hurt my leg. I think some people assume I've changed a lot, and I don't think I have.
6. The hardest part about mornings are: Trying to shake off the grogginess and drag myself out of bed. I also have a lot of morning pain and stiffness, so sometimes I have to lay there for 30+ minutes just to gather up the strength and courage to move.
7. My favorite medical TV show is: House.
8. A gadget I couldn’t live without is: My iPod touch. Everything is in there, appointments, medicine reminders, and important records. I have it with me at all times.
9. The hardest part about nights are: Relaxing enough to get over the pain and restlessness to fall asleep. On good nights, I fall asleep in 30-40 minutes after laying down, but it could take hours to get to sleep on some nights.
10. Each day I take __ pills & vitamins. 8 different types, but a total of 15 pills throughout the day. I also do a subcutaneous injection every other day.
11. Regarding alternative treatments I: The only alternative treatment I try currently is Vitamin D. I am not yet ready to try something alternative as my main treatment, but am open to supplemental treatments.
12. If I had to choose between an invisible illness or visible I would choose: I don't know how to answer this. Can I choose neither? Hmmm, maybe a visible illness? I don't know.
13. Regarding working and career: I want to work again, but honestly I'm afraid of getting back out there. Maybe this is because of my recent difficulties and in a few weeks I'll be back on my feet. I'm still optimistic and applying for jobs everyday, but I don't know how successful I will be when I can't find words or remember why I'm qualified. We'll see.
14. People would be surprised to know: I'm much more afraid and worried about my prognosis than I give off. I try to be strong and optimistic, but I'm terrified of what the future holds. I also still have falls and bladder accidents, though I try not to talk about it.
15. The hardest thing to accept about my new reality has been: Giving it a place in my life. Especially now that the symptoms are too much to ignore or suppress, I am constantly aware of being sick. Oh, and all the pills and injections, I hate them.
16. Something I never thought I could do with my illness that I did was: Dancing at the wedding without being tired or in tons of pain. That was the best.
17. The commercials about my illness: I haven't seen any. At least I don't remember seeing any...
18. Something I really miss doing since I was diagnosed is: Not caring. Not caring about what I eat or when I eat. Not caring what time it is or what day it is. Not caring if there are bathrooms nearby or if it's going to be warm.
19. It was really hard to have to give up: Going out and roaming around all day alone. Since my symptoms are still unpredictable, I rarely go out alone and when I do, I don't spend a lot of time out.
20. A new hobby I have taken up since my diagnosis is: Painting. I don't do it often enough, but I love it.
21. If I could have one day of feeling normal again I would: First, I don't know what normal is or remember how normal feels. If I could have a day without pain or fatigue, I would go for a walk along the bay or a day of shopping. Then I would watch a double feature and get a huge drink. Later, I would eat a good meal and enjoy a few glasses of wine, then spend the evening dancing.
22. My illness has taught me: To appreciate life. Even during the most difficult times, there are reasons to be thankful. It's also taught me to plan and be prepared.
23. Want to know a secret? One thing people say that gets under my skin is: Well, I HATE when people offer me a cure. HATE. I also hate when people try to "help" me manage my condition or try to persuade me to do what they think is best for me. I also don't like being told that I look good or seem happy, especially in response to me saying that I feel ill.
24. But I love it when people: Let me rant. Visit me or invite me to visit them. Send me funny internet links. Chat with me online.
25. My favorite motto, scripture, quote that gets me through tough times is: "He'll never put more on me than I can bear." It's from a Kirk Franklin song. I don't talk about my faith often, but I do identify as Christian and find a lot of strength in religion. I truly believe that no matter how tough life gets, it is never more than I can handle. Music also gets me through the rough times, which is another reason why my iPod is essential.
26. When someone is diagnosed I’d like to tell them: Stay strong. Life isn't over when you get a diagnosis, it's just taking a different path. If you believe you can make it through, you will make it through.
27. Something that has surprised me about living with an illness is: It sucks. No really, it sucks. I never expected to have so many crappy days or feel so shitty all the time. I'm hoping that in the next few months I'll get back to a place where this all feels manageable.
28. The nicest thing someone did for me when I wasn’t feeling well was: Visit me. I really really really like having visitors and appreciate when people come say hello, invite me to hang out with them, go to movies with me, or take me for coffee (just to name a few). Human contact makes my day.
29. I’m involved with Invisible Illness Week because: It's really easy to forget that people all around us are suffering whether we can see it or not. I decided to post this as a reminder that health and ability go beyond what we can see. Life is hard whether we can see it or not.
30. The fact that you read this list makes me feel: Loved. Appreciated. Heard.
Friday, September 11, 2009
Shitty.
For the past week or so I've been trying to sit down and wrangle my thoughts, but failing miserably. I am having a really tough time and even a visit to the neuro didn't offer any answers. I can't even describe what's going on with me and maybe that's why the visit was unproductive. But I'm alive, my pain is being managed, and I'm walking. Not sure I can ask for or expect anything more.
Wednesday, September 2, 2009
My Day at the Hospital
Today I went to the hospital to do my gastric emptying study. It was a pretty easy test, but I would prefer never having to do that again. My test was scheduled for 8:30 am and as usual, I arrived early. I had to wait for the secretary to come back to her desk so I could get signed in, but I didn't mind because I brought my iPod. The sign in process was really quick and they took me right back to start the first part of the test.
The way that it works is they have you eat a food that has a drop of radioactive isotope stirred in. You can't see the "dye," but they can use a special camera-like (in that it takes pictures) device to detect where the dye-stained food is in your system. Pictures are taken at various intervals to see where the food is and according to those results they can estimate the rate that your stomach empties. Obviously, a doctor would explain this different and give you more accurate details, this is just my explanation of the test as it happened to me.
Anyway, once they took me back they gave me two options, oatmeal or eggs. I happen to hate both, oatmeal for the texture and eggs for the smell, taste, and texture. I've been known to eat both, but with lots of seasonings and add-ins. Since I like oatmeal a little more and it doesn't have to be chewed, I chose oatmeal. 30 seconds later, the tech came back and informed me they were out of oatmeal so he was preparing the egg. I said OK and figured it couldn't be too bad. I WAS WRONG. A moment later, I was presented with a paper cup with a spoon in it. When I looked into the cup I was greeted with very fragrant, piping hot scrambled eggs that were microwaved in the paper cup. That was the first time I gagged. I was then warned that I needed to chew them in order for the test to work and told to get started. Let me tell you folks, this was the most vile thing I've ever eaten. The only thing that could have made it worse would have been eating mysteriously soggy bread. Not bread artfully dunked in coffee or tea then consumed, but a piece of crust left found in the sink after you empty out the dishwater. The eggs were disgusting. But I ate them, because I had to eat them.
After ingesting the dye, the tech took a set of pictures. To do this, I laid down on a very narrow concave table and a large ring slide over my head down to my chest. A horizontal plate was lowered to just a few inches above my chest and I was told to be still. The tech took three 1-minute long shots of my stomach (two from the top and one from below) and then helped me up. These first shots were taken just before 9 am and I returned to have more pictures taken at 10:30 and 12:30. Then I was free to go.
Of all the tests and procedures I've had done in the past couple months, this was one of the easier ones. It really sucked to eat the eggs and all the waiting around worked my nerves, but it was non-invasive and fast. The tech said the results should be ready tomorrow, but I probably won't get that information until I see the gastro on Sept 14, unless there's something that warrants another call at home. Speaking of which, I haven't gotten the lab forms yet, but will probably go out to have that done as soon as I receive the form.
The way that it works is they have you eat a food that has a drop of radioactive isotope stirred in. You can't see the "dye," but they can use a special camera-like (in that it takes pictures) device to detect where the dye-stained food is in your system. Pictures are taken at various intervals to see where the food is and according to those results they can estimate the rate that your stomach empties. Obviously, a doctor would explain this different and give you more accurate details, this is just my explanation of the test as it happened to me.
Anyway, once they took me back they gave me two options, oatmeal or eggs. I happen to hate both, oatmeal for the texture and eggs for the smell, taste, and texture. I've been known to eat both, but with lots of seasonings and add-ins. Since I like oatmeal a little more and it doesn't have to be chewed, I chose oatmeal. 30 seconds later, the tech came back and informed me they were out of oatmeal so he was preparing the egg. I said OK and figured it couldn't be too bad. I WAS WRONG. A moment later, I was presented with a paper cup with a spoon in it. When I looked into the cup I was greeted with very fragrant, piping hot scrambled eggs that were microwaved in the paper cup. That was the first time I gagged. I was then warned that I needed to chew them in order for the test to work and told to get started. Let me tell you folks, this was the most vile thing I've ever eaten. The only thing that could have made it worse would have been eating mysteriously soggy bread. Not bread artfully dunked in coffee or tea then consumed, but a piece of crust left found in the sink after you empty out the dishwater. The eggs were disgusting. But I ate them, because I had to eat them.
After ingesting the dye, the tech took a set of pictures. To do this, I laid down on a very narrow concave table and a large ring slide over my head down to my chest. A horizontal plate was lowered to just a few inches above my chest and I was told to be still. The tech took three 1-minute long shots of my stomach (two from the top and one from below) and then helped me up. These first shots were taken just before 9 am and I returned to have more pictures taken at 10:30 and 12:30. Then I was free to go.
Of all the tests and procedures I've had done in the past couple months, this was one of the easier ones. It really sucked to eat the eggs and all the waiting around worked my nerves, but it was non-invasive and fast. The tech said the results should be ready tomorrow, but I probably won't get that information until I see the gastro on Sept 14, unless there's something that warrants another call at home. Speaking of which, I haven't gotten the lab forms yet, but will probably go out to have that done as soon as I receive the form.
Tuesday, September 1, 2009
Organized.
From the time I posted last night until right around lunch today, I was dead set on my next post being a long list of why I have the right to be upset about the LFTs (liver function tests). I planned to explain how I logically know that there's nothing to worry about, but my emotional/irrational side has more reasons for me to wig out. And then I completed a project that I've been working on for years and wanted to take the time to brag about it.
Today I sorted, filed, shredded, and recycled the huge pile of miscellaneous paperwork that I've been holding on to since college. It was mostly mail, pay stubs, receipts, important letters and such, that just needed to be organized. But with my hoarder tendencies, I have always had a hard time going through the pile. Of course, once it gets out of hand or I'm preparing to move, I start to tackle the pile and kinda get it organized, but I never finish it. And I never truly purge the unnecessary stuff. I toss out a few things and then return the whole pile to a box or plastic grocery bag. This has honestly been the trend since college and I've carried various forms of this pile from Maine to California and it has grown with each move around the Bay Area.
The hard part came with our move to our current home which is small and doesn't have a lot of storage space. I had one box full of papers that I hid in my closet and a huge pile of current mail and documents that covered the floor just outside my closet. On top of this pile of papers I tossed clothes, pillows, purses, and pretty much anything else that I didn't feel like putting away. This pile routinely gets knee-high and Nilaja will coyly ask, "how do you get in your closet?" and I'll know that it's time to sort out the big items (like toss the laundry into the hamper). To be fair, I don't think Nilaja really cares about me being messing and often tells me to sit down when I get into my cleaning frenzies (which have never included tackling the pile), but the pile of crap was monstrous and often encroached on my safe passage to the bed.
I knew it was time to tackle the pile when I was talking to my gastro and had to paw through the crap on the floor in order to find the notebook where I keep my current health info. It was ridiculous. So I got up nice and early, ate a sensible breakfast, put on a podcast, and set out to tackle the monster. I started with the box in the closet. I looked at each page and sorted into one of three piles keep, recycle, shred. Then I took the keep pile and separated by type (pay stubs, credit card statements, health info, etc). The good thing about taking a second look is that I could decide if it was something I really needed, like an envelope full of wine articles ripped from magazines or a 4-year old collection of blank New York Times crossword puzzles. Purged. Once things were in their categorized piles I could easily organize them (reverse chronological order) and put them in my file box. I did the same process for the stuff on the floor.
The whole process took about 3 hours without breaks and I feel so relieved. I've wanted to complete that project for years and I'm glad I was finally able to do it. That made for an amazingly productive day and I look forward to never having another pile of crap ever again.
In other news, I called and scheduled the stomach emptying study. It's tomorrow morning at 8:30 am. I don't know how long it will take since it's done in intervals and it will keep going until they get all the results they need, but that's a good thing. I think this procedure will answer a lot of questions when it comes to the pain and nausea. I'll tell you all about it tomorrow evening.
Today I sorted, filed, shredded, and recycled the huge pile of miscellaneous paperwork that I've been holding on to since college. It was mostly mail, pay stubs, receipts, important letters and such, that just needed to be organized. But with my hoarder tendencies, I have always had a hard time going through the pile. Of course, once it gets out of hand or I'm preparing to move, I start to tackle the pile and kinda get it organized, but I never finish it. And I never truly purge the unnecessary stuff. I toss out a few things and then return the whole pile to a box or plastic grocery bag. This has honestly been the trend since college and I've carried various forms of this pile from Maine to California and it has grown with each move around the Bay Area.
The hard part came with our move to our current home which is small and doesn't have a lot of storage space. I had one box full of papers that I hid in my closet and a huge pile of current mail and documents that covered the floor just outside my closet. On top of this pile of papers I tossed clothes, pillows, purses, and pretty much anything else that I didn't feel like putting away. This pile routinely gets knee-high and Nilaja will coyly ask, "how do you get in your closet?" and I'll know that it's time to sort out the big items (like toss the laundry into the hamper). To be fair, I don't think Nilaja really cares about me being messing and often tells me to sit down when I get into my cleaning frenzies (which have never included tackling the pile), but the pile of crap was monstrous and often encroached on my safe passage to the bed.
I knew it was time to tackle the pile when I was talking to my gastro and had to paw through the crap on the floor in order to find the notebook where I keep my current health info. It was ridiculous. So I got up nice and early, ate a sensible breakfast, put on a podcast, and set out to tackle the monster. I started with the box in the closet. I looked at each page and sorted into one of three piles keep, recycle, shred. Then I took the keep pile and separated by type (pay stubs, credit card statements, health info, etc). The good thing about taking a second look is that I could decide if it was something I really needed, like an envelope full of wine articles ripped from magazines or a 4-year old collection of blank New York Times crossword puzzles. Purged. Once things were in their categorized piles I could easily organize them (reverse chronological order) and put them in my file box. I did the same process for the stuff on the floor.
The whole process took about 3 hours without breaks and I feel so relieved. I've wanted to complete that project for years and I'm glad I was finally able to do it. That made for an amazingly productive day and I look forward to never having another pile of crap ever again.
In other news, I called and scheduled the stomach emptying study. It's tomorrow morning at 8:30 am. I don't know how long it will take since it's done in intervals and it will keep going until they get all the results they need, but that's a good thing. I think this procedure will answer a lot of questions when it comes to the pain and nausea. I'll tell you all about it tomorrow evening.
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