I have so much I want to say and write about, but I just received a call from my gastro that has me quite distracted. He just received my latest blood test results and my liver function tests are "extremely high." I think he said the numbers are quadruple what they should be. I don't know what this all means for me, but he has me scared. I knew that Betaseron could do awful things to my liver, but I didn't know exactly what these awful things were. Notably, he mentioned that it could create some sort of autoimmune Hepatitis as my body begins to attack my liver. Lovely. He told me there isn't much he can tell me from the one general blood draw that he had done, but he's going to collect my history and he's sending me a more detailed order that he wants me to do ASAP. Interestingly, I've had liver function tests done before and the last time, July 22, was a few days after I started taking full doses of the Betaseron and one of my tests was elevated. I told Dr. H all of this and he asked me for two specific numbers from the results (which I have on hand), AST and ALT. In July my AST was high normal while my ALT was slightly elevated (deemed "not clinically significant"). Now they are both elevated. Really elevated. The good news is that my ultrasound was clear and my liver looked normal. He also cleared me to do the emptying study, so I'll call in the morning to set that up.
But folks, I'm worried. I really don't need something else to go wrong.
Monday, August 31, 2009
Thursday, August 27, 2009
3 years and family
Yesterday was the anniversary of my coming to California. I wanted to mention that in yesterday's post but I was in such a hurry to post it and already dopey, that it just didn't happen. I know you're thinking, "Chris, you posted that entry at 7:04 pm." Well, the timestamp is 7:04 pm. Actually, I posted it just after 10 pm. I guess the timestamp corresponds to the time you open the posting window and not when you click publish. And no, it didn't take me 3 hours to compose the post. I'd actually written my first sentence when my sister called and we got to chatting. I really do love talking to my sister on the phone. We haven't always gotten along, but as adults we're best friends. We easily have 2 hour conversations about every topic under the sun. That's what happened last night, we talked about the advantages and disadvantages (primarily) of weight loss surgery, weddings, and Christianity all in one conversation.
Talking to her also made me wonder if I've ever written about my family. I know I've mentioned them in rants before, but never given you a clear profile of them. How many of you knew I am a middle child? I am. I used to call myself the "extreme" middle child because my sister is 6 years older and my brother is 6 years younger (he sometimes comments here). That's just enough years to ensure that we never had the same friends, never attended a school at the same time, and it puts us in different generations. We were raised by my parents in Gary, Indiana. We all left home as after high school, but I'm the only one who settled outside of Indiana. My is the only one to give my parents grandchildren, 2 girls and a boy), but Nilaja and I are hoping to change that in a few years. I was the only one to do 4 years of college and I graduated from Colby College in Waterville, ME in 2006.
Which brings me back to California. I haven't always liked living here, but it's grown on me. I actually couldn't imagine leaving here now. Especially since I finally have my health care organized. Oy, I can't even imagine what it would take to recreate this network. But I'll do it if I need to. I'll just groan the whole time!
Talking to her also made me wonder if I've ever written about my family. I know I've mentioned them in rants before, but never given you a clear profile of them. How many of you knew I am a middle child? I am. I used to call myself the "extreme" middle child because my sister is 6 years older and my brother is 6 years younger (he sometimes comments here). That's just enough years to ensure that we never had the same friends, never attended a school at the same time, and it puts us in different generations. We were raised by my parents in Gary, Indiana. We all left home as after high school, but I'm the only one who settled outside of Indiana. My is the only one to give my parents grandchildren, 2 girls and a boy), but Nilaja and I are hoping to change that in a few years. I was the only one to do 4 years of college and I graduated from Colby College in Waterville, ME in 2006.
Which brings me back to California. I haven't always liked living here, but it's grown on me. I actually couldn't imagine leaving here now. Especially since I finally have my health care organized. Oy, I can't even imagine what it would take to recreate this network. But I'll do it if I need to. I'll just groan the whole time!
Wednesday, August 26, 2009
I left the house today!
Even though I was unable to workout this morning due to the pain and fatigue, I managed to leave the house today. Yay! It almost didn't happen though. See, I had to go to the post office to pick up a certified letter that the carrier couldn't be bothered to ring the bell and deliver yesterday. The post office isn't very far, about 3 blocks, but when I'm having a bad day that seems like miles. I also hate going to that post office because the entrance closest to my path and destination has stairs and the ramp is on the opposite side of the building. Although it's less than a full flight of stairs, in my head there is several flights of very steep stairs without a railing. But I also don't want to go to the other entrance because in my head, it's a mile away to get to it and I have to walk that same distance to get to the necessary area to retrieve my letter. Basically, when I woke up this morning the simple trip to the post office seemed as difficult as an unguided trek up Mt Everest.
After an hour of trying to get myself out of bed, dressed, and ready to go with no success I was almost ready to quit trying when a friend suggested I come visit her and another friend if I made it out. I knew she worked in the area, but I didn't know that her office was on the floor above the post office. (I didn't even know there were offices above the post office!) As a person who spends the daytime alone I couldn't pass up an opportunity like this. That simple invitation was the boost I needed to get dressed (I even put a little makeup on) and get my errand done.
Seeing those two friends today was really great. Although I am having a bad day with pain, fatigue, and cognitive difficulties, the whole interaction went really smoothly. They even played the "what is that person's name" game with me where I can't remember someone's name and go off into a whole description of the person while they guess who I was talking about. (Side note: I love that game and greatly appreciate when people play it with me and help me figure out the name. I've become really self-conscious about my cognitive difficulties and have been afraid of having more social interactions, but having them be so patient was really good for me. This time it was Anne Hathaway.) They even invited me back to visit them again and I just may take them up on it if I'm going down there or if I bake cookies or if it's been a while since I've been out and I just need to get out.
I like this getting out the house stuff. I think I'm gonna do it more often. It's good for me.
After an hour of trying to get myself out of bed, dressed, and ready to go with no success I was almost ready to quit trying when a friend suggested I come visit her and another friend if I made it out. I knew she worked in the area, but I didn't know that her office was on the floor above the post office. (I didn't even know there were offices above the post office!) As a person who spends the daytime alone I couldn't pass up an opportunity like this. That simple invitation was the boost I needed to get dressed (I even put a little makeup on) and get my errand done.
Seeing those two friends today was really great. Although I am having a bad day with pain, fatigue, and cognitive difficulties, the whole interaction went really smoothly. They even played the "what is that person's name" game with me where I can't remember someone's name and go off into a whole description of the person while they guess who I was talking about. (Side note: I love that game and greatly appreciate when people play it with me and help me figure out the name. I've become really self-conscious about my cognitive difficulties and have been afraid of having more social interactions, but having them be so patient was really good for me. This time it was Anne Hathaway.) They even invited me back to visit them again and I just may take them up on it if I'm going down there or if I bake cookies or if it's been a while since I've been out and I just need to get out.
I like this getting out the house stuff. I think I'm gonna do it more often. It's good for me.
Tuesday, August 25, 2009
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.
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.
Monday, August 24, 2009
Feeling Better
First, thank you for all the emails and Facebook messages. Your kind words were a big help in raising my mood. I promise I will respond to them all, just give me a little time. I was under a pretty dark cloud until Saturday afternoon, but it wasn't anything a bus ride and my favorite surroundings couldn't fix. By Saturday afternoon I was back to my old self. I am also happy to report that after several weeks of not having the energy or drive to do anything around the apartment, I finally got ALL my cleaning done today. That's right, I got all the dishes washed and put away, I vacuumed, I cleaned behind the toilet, and even did some spot removal on our carpeting. It feels so good to be able to clean. I don't know if I've told you all, but cleaning is one of my favorite hobbies. I would rank it right after singing but before cooking (I am so weird). So, it feels good to spend a day listening to podcasts and scrubbing our apartment.
All that cleaning also got me thinking. To be honest, I didn't think about anything new, I just figured out a possible partial solution to a complex problem. Money. Let me tell you, having a chronic illness and trying to maintain some level of wellness is an expensive endeavor. Be it maintenance care (like monthly prescriptions or follow up doctor visits), to acute care (like ER visits or hospital stays), to supplemental items (like vitamins or quality-of-life items), even with decent medical coverage, the costs of trying to be as healthy and happy as possible can quickly become unaffordable. I'm at that point. Well, I was never in a position where I could afford to be sick, but the costs of trying to be as healthy as I can be have surpassed the resources. Between the hospital bills, all the new prescriptions, the influx of doctor visits and prescribed physical therapy, plus all my household bills, the well has run dry.
While, I can't stop treating my illness or seeing my doctors (well, I can but I'm not going to), I have decided to eliminate as much extra stuff as possible. This includes all vitamins and supplements and sleeping aids. I am also going to try to cut down on my use of bladder control pads, which may mean more neurosis, but they are crazy expensive (even the store brand) and if I only use them when I go out, I can stretch that cost over several months. I am also going to speak with my doctors and see if I can see them every 6-8 weeks instead of every 4 weeks. And I decided that for now, I'm not going to do the physical therapy for my shoulder. I know it's important to maintain my non-MS-related health, but PT isn't feasible right now. I'm sure between my network of friends and my awesome Google-fu, I'll figure out ways to help my shoulder. And if not, I can focus on my shoulder after we figure out my stomach issues.
Speaking of stomach issues, I need to call the gastro and find out what's going on with the emptying study and if they saw anything on the ultrasound. I don't know how much longer I can deal with all the nausea. The Prilosec is not helping.
Oh, I also have two new symptoms to report. First, I'm starting to have significant numbness and tingling on my face. It's such a weird feeling and very different from the numbness I feel in my hands and feet. It's only on the right side of my face mostly around my upper lip and usually happens in the morning. Though, it's tingling right now just to spite me.
The second symptom is very distinct memory loss. I've had small moments of forgetfulness for a few months, but recently acknowledged that there are recent events that are completely gone. I'm having a bit of a hard time with this because my memory was once one of my best traits. Now there are lists upon lists upon lists and I still forget. I'm sorry about all the birthdays I keep missing. :-( But it's not all bad. Now that I realize I'm losing some things, I'm spending more time tracing memories and exploring the things I do remember. For example, a song will come on the radio and it'll feel oddly familiar. So, I'll think about it and maybe remember that it's something I heard in college. Instead of leaving it there, I'll try to remember where I was or who I was with, and the next thing I know all the emotions and laughter of the original event are back. (Hey guys, remember "Run by Collective Soul?") I love this. I am such a sentimental-nostalgic-emotional creature and these personal little moments are the best. And by some miracle, these memories are usually really happy and remind me just how much I am loved and love the people that I call family and friends. (I know I'm a loser and don't keep in touch, but I still love you.)
OK, enough sentimentality for tonight. Time for bed. By the way, I'm still looking for part time or gentle full time work. If you have any leads, please email me. Thanks.
All that cleaning also got me thinking. To be honest, I didn't think about anything new, I just figured out a possible partial solution to a complex problem. Money. Let me tell you, having a chronic illness and trying to maintain some level of wellness is an expensive endeavor. Be it maintenance care (like monthly prescriptions or follow up doctor visits), to acute care (like ER visits or hospital stays), to supplemental items (like vitamins or quality-of-life items), even with decent medical coverage, the costs of trying to be as healthy and happy as possible can quickly become unaffordable. I'm at that point. Well, I was never in a position where I could afford to be sick, but the costs of trying to be as healthy as I can be have surpassed the resources. Between the hospital bills, all the new prescriptions, the influx of doctor visits and prescribed physical therapy, plus all my household bills, the well has run dry.
While, I can't stop treating my illness or seeing my doctors (well, I can but I'm not going to), I have decided to eliminate as much extra stuff as possible. This includes all vitamins and supplements and sleeping aids. I am also going to try to cut down on my use of bladder control pads, which may mean more neurosis, but they are crazy expensive (even the store brand) and if I only use them when I go out, I can stretch that cost over several months. I am also going to speak with my doctors and see if I can see them every 6-8 weeks instead of every 4 weeks. And I decided that for now, I'm not going to do the physical therapy for my shoulder. I know it's important to maintain my non-MS-related health, but PT isn't feasible right now. I'm sure between my network of friends and my awesome Google-fu, I'll figure out ways to help my shoulder. And if not, I can focus on my shoulder after we figure out my stomach issues.
Speaking of stomach issues, I need to call the gastro and find out what's going on with the emptying study and if they saw anything on the ultrasound. I don't know how much longer I can deal with all the nausea. The Prilosec is not helping.
Oh, I also have two new symptoms to report. First, I'm starting to have significant numbness and tingling on my face. It's such a weird feeling and very different from the numbness I feel in my hands and feet. It's only on the right side of my face mostly around my upper lip and usually happens in the morning. Though, it's tingling right now just to spite me.
The second symptom is very distinct memory loss. I've had small moments of forgetfulness for a few months, but recently acknowledged that there are recent events that are completely gone. I'm having a bit of a hard time with this because my memory was once one of my best traits. Now there are lists upon lists upon lists and I still forget. I'm sorry about all the birthdays I keep missing. :-( But it's not all bad. Now that I realize I'm losing some things, I'm spending more time tracing memories and exploring the things I do remember. For example, a song will come on the radio and it'll feel oddly familiar. So, I'll think about it and maybe remember that it's something I heard in college. Instead of leaving it there, I'll try to remember where I was or who I was with, and the next thing I know all the emotions and laughter of the original event are back. (Hey guys, remember "Run by Collective Soul?") I love this. I am such a sentimental-nostalgic-emotional creature and these personal little moments are the best. And by some miracle, these memories are usually really happy and remind me just how much I am loved and love the people that I call family and friends. (I know I'm a loser and don't keep in touch, but I still love you.)
OK, enough sentimentality for tonight. Time for bed. By the way, I'm still looking for part time or gentle full time work. If you have any leads, please email me. Thanks.
Thursday, August 20, 2009
Bad Day
I know it's only 7:39 am and I've been awake for 24 minutes, but I'm having a bad day. A really bad day. The kind of day where I'd take a sleeping pill right now to sleep the day away and another to get me through the evening until tomorrow. But I can't because I have my ultrasound today and I can't miss that. Though I want to miss it because I'm having a lot of anxiety about it. Yes, I know that it's non-invasive and I'll basically just lay there while it happens, but that doesn't alleviate my nerves. Along with the anxiety, I'm exhausted, I'm having sharp shooting pains all over my body, I have a headache, and I feel shaky. Oh, and my brain is moving really slowly. Every few seconds I find myself staring off into space and I can't focus. Ugh, I'll probably forget something and end up crying. I hate this, I hate this, I hate this. Why can't I just be "normal."
Tuesday, August 18, 2009
Today's problems: Fatigue and Spasticity
Today I slept until 10:22 am. OK, that's not entirely true. I actually ignored the 4:30 alarm and crawled out of bed at 4:54, just in time to get dressed and head to the fitness center with Nilaja. I don't think I mentioned that we are getting back into our morning workout routine. It's going pretty well and I'm even back on the treadmill. Defiantly of course, but to my credit, I am not pushing myself like I was before, I don't go on days when I haven't slept, and if I start feeling numb, overheated, dizzy, or light-headed I stop. (See, even I can overcome stubbornness.) After the half hour workout, Nilaja gets ready for work and I head back to bed with my ice water. I usually go back to sleep, but am up having breakfast by 9 am.
Today was different. When our alarms went off (we use separate alarms and mine goes off just seconds before Nilaja's), I didn't even open my eyes because I was exhausted. I don't even remember hearing Nilaja get out of bed. And then for some strange reason I woke up at 4:54, realized Nilaja hadn't left yet, and decided to ignore the fatigue. Sometimes I do the dumbest things. Doing the treadmill was harder today than it was the first time I tried after the hospital. My legs felt like they were made of lead, my head was foggy, and after only three minutes, the heat started. I thought about stopping, but I wasn't going very fast, the incline wasn't too bad, and my feet weren't numb. Stopping didn't feel justified. I made it through and headed to bed just as tired as I usually am.
And then I slept, and slept, and slept. On one of my rollovers I caught a glimpse of the clock and was shocked to see that it was after ten. I can't remember the last time I slept that late without having a fever. To make matters worse, it was 10:22 am and I wasn't awake enough to get up. I laid there for another 40 minutes before I was able to stand up. And the prize for standing, spasticity. My legs felt stiff and the muscles were so tight that I thought I would rip them if I stretch my legs. I had mild spasms in my calf muscles, but thankfully they went away after I moved around a bit.
I hate days like this. I'm too tired to move, but have to, and when I do it hurts. I managed to get some food around noon and I've only gotten up from the dining table once since then, to prep the vegetables for dinner. Days like today are great reminders that I need to do what I can when I can. I never know when my pain levels or fatigue will be higher, so I can't put things off. I also can't get too upset when my plans have to change. There will be time for chores and baking on another day. Today I'm going to sit at the dining room table, listening to music, and resting.
Today was different. When our alarms went off (we use separate alarms and mine goes off just seconds before Nilaja's), I didn't even open my eyes because I was exhausted. I don't even remember hearing Nilaja get out of bed. And then for some strange reason I woke up at 4:54, realized Nilaja hadn't left yet, and decided to ignore the fatigue. Sometimes I do the dumbest things. Doing the treadmill was harder today than it was the first time I tried after the hospital. My legs felt like they were made of lead, my head was foggy, and after only three minutes, the heat started. I thought about stopping, but I wasn't going very fast, the incline wasn't too bad, and my feet weren't numb. Stopping didn't feel justified. I made it through and headed to bed just as tired as I usually am.
And then I slept, and slept, and slept. On one of my rollovers I caught a glimpse of the clock and was shocked to see that it was after ten. I can't remember the last time I slept that late without having a fever. To make matters worse, it was 10:22 am and I wasn't awake enough to get up. I laid there for another 40 minutes before I was able to stand up. And the prize for standing, spasticity. My legs felt stiff and the muscles were so tight that I thought I would rip them if I stretch my legs. I had mild spasms in my calf muscles, but thankfully they went away after I moved around a bit.
I hate days like this. I'm too tired to move, but have to, and when I do it hurts. I managed to get some food around noon and I've only gotten up from the dining table once since then, to prep the vegetables for dinner. Days like today are great reminders that I need to do what I can when I can. I never know when my pain levels or fatigue will be higher, so I can't put things off. I also can't get too upset when my plans have to change. There will be time for chores and baking on another day. Today I'm going to sit at the dining room table, listening to music, and resting.
Monday, August 17, 2009
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.
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.
Sunday, August 9, 2009
Why I cut my hair for a stranger.
Today I met a little girl named Ruby. Ruby is 3 years old. Ruby has Acute Lymphoblastic Leukemia. Cancer. She is also one of the happiest, most energetic people that I have ever met. Today, I cut my hair off for her and it has made my day!
A week or two ago a friend of mine, Jenn, posted on Facebook about a party for one of her friends, Ruby. I was intrigued and asked for more information. She told me that Ruby was recently diagnosed with cancer and her parents were throwing her a head-shaving party, which they cleaverly titled "Shear Solidarity: A Fun(d) Razor for Ruby." I thought, "What a great idea," and marked it on my calendar. Even though I wasn't ready to shave my head and didn't have any money to give (I'm still trying to figure out my own medical bills), I thought it might be nice to go to the party to share my support of the cause.
Then, on one of those sleepless nights recently, I started to think about the event and what I could do to really show my support and I immediately knew I would cut my hair off. I mean, why not? I complain about all the energy it takes to maintain my hair and have wanted a more carefree hairstyle. I really don't understand why I was so apprehensive about cutting it. So, instead of getting it professionally braided, I'd cut it all off.
Honestly, though I'd been looking forward to the party, I was also a little hesitant about it. I've never been to a head-shaving party and wasn't sure what the mood would be like. Would it be a somber event where we each trudge up for our chance in the chair after waving at poor little Ruby lounging in her seat? Or would it be one of those parties where the reason for the gathering is the big elephant in the room and everyone tiptoes around hoping not to break one of the metaphorical eggshells?
To my delight, it was neither. Ruby's party was the hightlight of my week, maybe even my month. Everyone there was so full of joy and happiness. When I met Ruby, the first thing I noticed was her big smile and pretty blue eyes. She was sitting in a red wagon, but that only lasted for a few minutes. Once she arrived to the park, she was up and running around just like all the other kids and not missing a beat when it came to being a kid. It was fantastic. And then I met her parents, Mars and Ben. Mars is one of those women who walks into the room and everyone smiles. She radiates enthusiasm and sunshine. Seriously, when I met her I did one of those goofy smiles that makes people think I've just taken pain medication. Her dad was such a great guy, too. He was charming and made me feel right at home with him and his friends and family. I love that feeling.
Mars was the first to get her hair cut. She'd parted her red hair into tiny little ponytails and allowed everyone who'd donated the opportunity to cut one off. As each lock of hair was chopped off by the party guests, Mars cheered them on. By the time it was my turn to get cut, I was pumped. After watching Mars celebrate her hair being methodically chopped off and then shaved to the scalp, I couldn't squirm about mine. I hopped right into the chair and sat still as my shoulder length hair was whacked off in preparation for the clippers. No second thoughts.
Now that I'm home and Nilaja has had a chance to rub her hand over it and offer her approval, I have to tell you that I am so glad I went and even happier that I cut my hair off for Ruby. I think I would have been happy I did it no matter what, but doing it for a great family was an added bonus. They are such good people and I think they are handling their situation with strength and grace. I don't know what it's like to have cancer or a close family member with cancer, but I do know what it's like to have a chronic illness. And while it's not fun and games all the time, it does make the days go faster if you take a few moments to laugh. I only spent a few hours with them, but I know that over the 2 1/2 years that Ruby will be having daily chemo therapy treatments, there will be tons of laughter. And when this is all over, when Ruby beats this, the laughter will continue.
I may have just met Ruby and her family, but I hope there will be more occasions for me to share their joy. In just 4 hours, they taught me more about living happily with chronic illness than I've learned in 5 months. These are lessons I'll never forget.
The family is still accepting donations. If you'd like to help Mars and Ben pay for Ruby's care, please visit this website they have set up. You can also find more information about Ruby and her family there.
A week or two ago a friend of mine, Jenn, posted on Facebook about a party for one of her friends, Ruby. I was intrigued and asked for more information. She told me that Ruby was recently diagnosed with cancer and her parents were throwing her a head-shaving party, which they cleaverly titled "Shear Solidarity: A Fun(d) Razor for Ruby." I thought, "What a great idea," and marked it on my calendar. Even though I wasn't ready to shave my head and didn't have any money to give (I'm still trying to figure out my own medical bills), I thought it might be nice to go to the party to share my support of the cause.
Then, on one of those sleepless nights recently, I started to think about the event and what I could do to really show my support and I immediately knew I would cut my hair off. I mean, why not? I complain about all the energy it takes to maintain my hair and have wanted a more carefree hairstyle. I really don't understand why I was so apprehensive about cutting it. So, instead of getting it professionally braided, I'd cut it all off.
Honestly, though I'd been looking forward to the party, I was also a little hesitant about it. I've never been to a head-shaving party and wasn't sure what the mood would be like. Would it be a somber event where we each trudge up for our chance in the chair after waving at poor little Ruby lounging in her seat? Or would it be one of those parties where the reason for the gathering is the big elephant in the room and everyone tiptoes around hoping not to break one of the metaphorical eggshells?
To my delight, it was neither. Ruby's party was the hightlight of my week, maybe even my month. Everyone there was so full of joy and happiness. When I met Ruby, the first thing I noticed was her big smile and pretty blue eyes. She was sitting in a red wagon, but that only lasted for a few minutes. Once she arrived to the park, she was up and running around just like all the other kids and not missing a beat when it came to being a kid. It was fantastic. And then I met her parents, Mars and Ben. Mars is one of those women who walks into the room and everyone smiles. She radiates enthusiasm and sunshine. Seriously, when I met her I did one of those goofy smiles that makes people think I've just taken pain medication. Her dad was such a great guy, too. He was charming and made me feel right at home with him and his friends and family. I love that feeling.
Mars was the first to get her hair cut. She'd parted her red hair into tiny little ponytails and allowed everyone who'd donated the opportunity to cut one off. As each lock of hair was chopped off by the party guests, Mars cheered them on. By the time it was my turn to get cut, I was pumped. After watching Mars celebrate her hair being methodically chopped off and then shaved to the scalp, I couldn't squirm about mine. I hopped right into the chair and sat still as my shoulder length hair was whacked off in preparation for the clippers. No second thoughts.
Now that I'm home and Nilaja has had a chance to rub her hand over it and offer her approval, I have to tell you that I am so glad I went and even happier that I cut my hair off for Ruby. I think I would have been happy I did it no matter what, but doing it for a great family was an added bonus. They are such good people and I think they are handling their situation with strength and grace. I don't know what it's like to have cancer or a close family member with cancer, but I do know what it's like to have a chronic illness. And while it's not fun and games all the time, it does make the days go faster if you take a few moments to laugh. I only spent a few hours with them, but I know that over the 2 1/2 years that Ruby will be having daily chemo therapy treatments, there will be tons of laughter. And when this is all over, when Ruby beats this, the laughter will continue.
I may have just met Ruby and her family, but I hope there will be more occasions for me to share their joy. In just 4 hours, they taught me more about living happily with chronic illness than I've learned in 5 months. These are lessons I'll never forget.
(Here are a few pictures that were taken after a shower, which means no makeup.)
The family is still accepting donations. If you'd like to help Mars and Ben pay for Ruby's care, please visit this website they have set up. You can also find more information about Ruby and her family there.
Thursday, August 6, 2009
"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.
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.
Tuesday, August 4, 2009
Making changes
I'm officially applying for jobs again, YAY! I'm actually really excited about working again. I think it will be good for me to get back out and start using my brain again. Currently I'm only applying for part time work which will be easier for me to ease my way into, but within the next few months or so, I'd like to be back up to full time. Wish me luck!
I want to cut all my hair off. I've worn it very short before and loved it. I think it will make my life so much easier and will help me conserve energy. Even though I cut it all off before, I'm still a little afraid. I've become really attached to my hair and can't stop wondering if I'll regret the cut. I was the same way last time. I actually talked about it so much that my good friend Nicki picked up a phone and made an appointment for me. I had 30 minutes later, my hair was gone and I loved it. Maybe I should do that again...
I bought a domain name and am currently working a website for My Journey with MS. It's still being formatted and worked out, but within the next month we (the blog and hopefully all of you) will be moving to a new site. YAY! Once the site is up I'll post links and keep this site live for a while.
I'm still having tons of sleeping issues. I'm hoping that my appointment with the neurologist on Friday will yield some better sleep help. And pain help.
I want to cut all my hair off. I've worn it very short before and loved it. I think it will make my life so much easier and will help me conserve energy. Even though I cut it all off before, I'm still a little afraid. I've become really attached to my hair and can't stop wondering if I'll regret the cut. I was the same way last time. I actually talked about it so much that my good friend Nicki picked up a phone and made an appointment for me. I had 30 minutes later, my hair was gone and I loved it. Maybe I should do that again...
I bought a domain name and am currently working a website for My Journey with MS. It's still being formatted and worked out, but within the next month we (the blog and hopefully all of you) will be moving to a new site. YAY! Once the site is up I'll post links and keep this site live for a while.
I'm still having tons of sleeping issues. I'm hoping that my appointment with the neurologist on Friday will yield some better sleep help. And pain help.
Saturday, August 1, 2009
Top 5 Things that I Learned Last Night/This Morning
1. I cannot go two consecutive nights without a sleeping aid, even if the first night was restless and I resist taking a nap. I've been awake since 8:16 am Friday morning. I actually woke up at 4:04 am, but managed to get back to sleep after Nilaja left for work (at 7 am). My doctor suggested I take a pill every other night and I should have taken one last night, but I thought I was tired enough to get to sleep without it. I gave up trying to sleep around 3 am.
2. There is nothing good on tv after 3 am. I watched a few cartoons and a few infomercials, before I gave up and tried to be a little more creative and productive.
3. Trying to paint when I have insomnia results in a huge waste of materials. I made two attempts at a nature scene with sky and wild flowers. The first is unbalanced and the colors were off so I put it to the side unfinished. The second looks like a kindergartner got a hold of some paint. It's so bad I didn't even sign it.
4. The numbness and tingling in my legs goes wild when I don't sleep. I wish there was a way to show you how painful this can be.
5. The absolute worst thing for a headache is not sleeping. I'm fairly certain that the stabbing headache I had all day yesterday was a result of not sleeping well on Thursday night. So imagine how I feel that I still haven't gotten any sleep. Please someone come take the knife out of my skull.
2. There is nothing good on tv after 3 am. I watched a few cartoons and a few infomercials, before I gave up and tried to be a little more creative and productive.
3. Trying to paint when I have insomnia results in a huge waste of materials. I made two attempts at a nature scene with sky and wild flowers. The first is unbalanced and the colors were off so I put it to the side unfinished. The second looks like a kindergartner got a hold of some paint. It's so bad I didn't even sign it.
4. The numbness and tingling in my legs goes wild when I don't sleep. I wish there was a way to show you how painful this can be.
5. The absolute worst thing for a headache is not sleeping. I'm fairly certain that the stabbing headache I had all day yesterday was a result of not sleeping well on Thursday night. So imagine how I feel that I still haven't gotten any sleep. Please someone come take the knife out of my skull.
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