I don't have a whole lot to report for this week, just generally achiness and fatigue. I didn't really even keep track of what day it was because so little was going on! It seems that the skin sensitivities really do seem to be under control from the Savella. My ears started itching a little bit and they are still broke out after all..... but it's not nearly as bad as it was! I'm still thinking "slowly" too, which is interesting because it gives you more time to analyze everything. You'd think that all that analysis would give me stuff to write about but I'm not quite ready to share those things yet. :) I've read a lot about the possible "causes" of FM and it's flare-ups and I'm trying to make a few connections between stress and symptoms. Anyhow, once I'm ready, you can bet you'll hear all about it! Thanks for reading! <3
A quick update after posting: Today is my first day on full-strength Savella (50mg) and the nausea is horrid. *Shovels in the gingersnaps*
Monday, April 30, 2012
Wednesday, April 25, 2012
What Was I Saying?
I've tried to keep a diary, a journal, a blog before and failed epically but it seems like every day I think "OH! I should totally blog that!". So I'm not promising a daily post but I've decided that besides my weekly wrap up I'm going to randomly post if I want to!
Today's post is about memory.... or lack thereof. I had intended to discuss this in my report for last week but I wasn't really ready for all of the emotion that is behind it. I think I am now so here goes nothing! Losing my memory has really been the most challenging of all of the symptoms I've experienced with FM. Oftentimes, I find myself stopping dead in my tracks because I've forgotten where I was going. Sometimes I arrive there but once I get there, I don't remember why I'm there. I like to think I'm a fairly intelligent person with a pretty good vocabulary but sometimes I can't remember a word that I want to use in a sentence. (Thankfully, I'm still able to come up with similar words to get my point across and oftentimes the person I'm talking to comes up with the word I actually wanted for me.) Sometimes I forget halfway through the sentence what I was saying. I'm currently trying to remember what plans I had made for this Friday last week and I'm at a point that I'm not even sure I DID have plans to start with. Now memory, for me at least, is a tricky thing. I have very specific and vivid memories of some events..... some of them important, some of them seemingly meaningless. Other events, I've got very foggy or vague recollections. Some seem to be gone for good, though I hope that's not the case.
I look at people who I've known for years and can't come up with a name or where I know them from. If I DO come up with a name, sometimes that's all that I can get. I get friend requests on Facebook from people and I look at the name and the picture and I get a blank even if we have 50 friends in common who went to the same school. I see people out in the store and I feel like I should know them but I can't place them at all. I'm not trying to ignore you but if I don't talk to you it's because I'm embarrassed because I have no clue who you are or how I know you.
If we've made plans and I didn't show up or cancelled at the last minute, chances are that I forgot until it was too late or I double booked myself. Sometimes it's simply because I'm too tired. If we're having a discussion and I seem to get agitated or annoyed, chances are I'm struggling to remember what we're talking about. Sometimes I think I remember things that never happened so I might even hold a grudge over something that never really even occurred.
Okay, I've stalled enough, here's the emotional stuff. I have been in bed after a bout of forgetting something important and wished that I wouldn't wake up the next morning because I couldn't bear another day of forgetting even more. I think this has to be the closest you can come to having Alzheimer's without actually having it and at my age the thought of having another 30-50 years of this is unbearable. To forget very significant events in your life is devastating to say the least. I have memories of the day that Kyle was born but I feel like I'm missing the most important stuff. I don't remember seeing him for the first time, or his first bottle. I don't remember holding him and I don't remember what he smelled like as a baby. I've forgotten the first day of preschool and even the events of Kindergarten-hell are starting to fade a bit. Sometimes I feel like I have trouble relating to him as "my child" instead of a "small friend" and I think that's what I'm losing with my memory because I don't have those mother-baby connection memories. I also have a harder time dealing with death now because once that person has passed, I'm afraid my memories will go right along with them and eventually it will be like they never existed in my life. I remember my Gram used to laugh a lot, but I can't remember the sound of it. If I seem to grieve longer than others, it's because I feel like that's the only way I can hold onto them.
I AM starting to feel better. I don't feel like I'm forgetting as much as I was before. I can even tell you today what I had for dinner last night and for me that's pretty impressive. I don't know if long-term memory loss is recoverable so we'll have to see what happens with that. So far, short-term is improving but really in the long run, I don't care what I ate for dinner the day before.... I just don't want to lose my past. Enough for now, thanks for reading.
Today's post is about memory.... or lack thereof. I had intended to discuss this in my report for last week but I wasn't really ready for all of the emotion that is behind it. I think I am now so here goes nothing! Losing my memory has really been the most challenging of all of the symptoms I've experienced with FM. Oftentimes, I find myself stopping dead in my tracks because I've forgotten where I was going. Sometimes I arrive there but once I get there, I don't remember why I'm there. I like to think I'm a fairly intelligent person with a pretty good vocabulary but sometimes I can't remember a word that I want to use in a sentence. (Thankfully, I'm still able to come up with similar words to get my point across and oftentimes the person I'm talking to comes up with the word I actually wanted for me.) Sometimes I forget halfway through the sentence what I was saying. I'm currently trying to remember what plans I had made for this Friday last week and I'm at a point that I'm not even sure I DID have plans to start with. Now memory, for me at least, is a tricky thing. I have very specific and vivid memories of some events..... some of them important, some of them seemingly meaningless. Other events, I've got very foggy or vague recollections. Some seem to be gone for good, though I hope that's not the case.
I look at people who I've known for years and can't come up with a name or where I know them from. If I DO come up with a name, sometimes that's all that I can get. I get friend requests on Facebook from people and I look at the name and the picture and I get a blank even if we have 50 friends in common who went to the same school. I see people out in the store and I feel like I should know them but I can't place them at all. I'm not trying to ignore you but if I don't talk to you it's because I'm embarrassed because I have no clue who you are or how I know you.
If we've made plans and I didn't show up or cancelled at the last minute, chances are that I forgot until it was too late or I double booked myself. Sometimes it's simply because I'm too tired. If we're having a discussion and I seem to get agitated or annoyed, chances are I'm struggling to remember what we're talking about. Sometimes I think I remember things that never happened so I might even hold a grudge over something that never really even occurred.
Okay, I've stalled enough, here's the emotional stuff. I have been in bed after a bout of forgetting something important and wished that I wouldn't wake up the next morning because I couldn't bear another day of forgetting even more. I think this has to be the closest you can come to having Alzheimer's without actually having it and at my age the thought of having another 30-50 years of this is unbearable. To forget very significant events in your life is devastating to say the least. I have memories of the day that Kyle was born but I feel like I'm missing the most important stuff. I don't remember seeing him for the first time, or his first bottle. I don't remember holding him and I don't remember what he smelled like as a baby. I've forgotten the first day of preschool and even the events of Kindergarten-hell are starting to fade a bit. Sometimes I feel like I have trouble relating to him as "my child" instead of a "small friend" and I think that's what I'm losing with my memory because I don't have those mother-baby connection memories. I also have a harder time dealing with death now because once that person has passed, I'm afraid my memories will go right along with them and eventually it will be like they never existed in my life. I remember my Gram used to laugh a lot, but I can't remember the sound of it. If I seem to grieve longer than others, it's because I feel like that's the only way I can hold onto them.
I AM starting to feel better. I don't feel like I'm forgetting as much as I was before. I can even tell you today what I had for dinner last night and for me that's pretty impressive. I don't know if long-term memory loss is recoverable so we'll have to see what happens with that. So far, short-term is improving but really in the long run, I don't care what I ate for dinner the day before.... I just don't want to lose my past. Enough for now, thanks for reading.
Sunday, April 22, 2012
Week 1: April 16-22
Monday
I was so nervous all day waiting for my 2:50pm appointment. I went over my symptom list that I'd made and checked, double-checked and triple-checked. I verified that I had all of my MRI films and radiology reports together and then I sat and waited. I was so fortunate to have my best friend Meredith to keep me calm and hold my hand, even if it was via text, because I was 2 days off of my anti-depressants and I was a MESS! I was hoping for a new script so when that one ran out at the end of last week, I didn't refill it. The doctor's office was a little chaotic with all of the people who had gotten sick over the weekend, regular scheduled appointments and being in the process of moving to their new location but I finally got out of the waiting room. Of course our first stop was the scale.... I'm not going to reveal the result of that but I've lost a substantial amount of weight over the last few years, close to 70 lbs! I sat down for the work-up with the nurse (she was filling in to help my doctor's care-team) and she was so amazingly sweet when I explained what was going on and showed her my list of symptoms. My blood pressure was actually kind of high for me 120/70 and my temperature was 97.5. Next, I saw my doctor. We went over my medical history with my previous doctor and the neurologist I'd been referred to. We looked at the reports from the radiologist about my MRIs... three on my brain and one on my spine. He looked at my symptom list I'd compiled and we discussed how many things I'd kept to myself because I was afraid of sounding like a hypochondriac. Not only did he tell me that I'd never had a stroke that he could see (something I'd been told by my previous GP), he also told me that based on the results of all of my brain MRIs I do NOT have Multiple Sclerosis! Anyhow, to wrap up Monday.... I was diagnosed with Fibromyalgia. Since I don't have health insurance, my doctor gave me a month worth of samples of the drug Savella. If you're curious about the symptom list I used click here. I literally have experienced all but about 15 of those symptoms in the last 6 months.
Tuesday
Day 1 on Savella! The way it works, you start out taking 12.5mg twice a day, then move to 25mg twice a day and finally 50mg twice a day. Each sample pack is supposed to last 2 weeks but my GP said that it seemed to be having better effects if it was doubled so he told me to use the 12.5 from the first pack then do the 12.5 from the second pack and so on. It might sound crazy but by the end of the day, I SWEAR I was already feeling some good effects from it even with the unbearable nausea. I've decided I'm going to be open and honest about my diagnosis with everyone because it might make it easier for everyone to understand why I can and can't do/remember certain things.
Wednesday
REALLY?! My ears have stopped itching! For those of you who don't know, I've had psoriasis patches on my ears since 1997. They are flaky, bloody, itchy and disgusting and I hate them so much... especially since I can't cover them with my hair because that makes them itch more... but today.... they aren't itching! I noticed it first when I was in bed last night because normally I have to flip my head over every 5 minutes because the ear on the pillow gets too hot and starts itching. I'm also noticing something weird and I think I may have figured it out..... "normal" people think slowly! I can't remember a time when I didn't have 50-100 random thoughts bouncing around my brain at once.... until now. It's almost like being on Vicodin where everything seems to slow down only there's no tiredness and no "fog" to it. Processing thoughts a few at a time is AMAZING! (Addition: I went outside when they were mowing and didn't get stuffed up... could it be possible?)
Thursday
Okay, so I do have a couple complaints. I'm still not sleeping, I might even be sleeping LESS because I'm forcing myself to NOT nap. I want to sleep at night! And the nausea.... oh the horrible nausea. But because I'm seeing such good coming out of this already I'm not ready to give up! I've been doing a lot of reading online and what I've seen so far is that several people have quit Savella in the first few days because of the nausea but those who've made it past the first two weeks say that it's amazing. I'm going to be one of them! I ran into a couple friends when I was at Wal-Mart and one of them is also suffering from FM. It's SO great when you run into someone else because they can give you such validation of what you're experiencing! Tonight, when I took my evening dose, I followed it with a handful (okay, maybe 2 handfuls) of gingersnaps that I picked up at the store. Guess what... no more nausea! I figured I'd have to eat some with every dose for awhile but that's okay because I LOVE feeling this good! (Addition: I also found out that with my new medication, I'll be able to go out in the sun again!)
Friday
Well, today was interesting. I woke up with blood in my urine and my feet and ankles were a little swollen. The swelling is a known side effect, I think it goes along with the rise in blood pressure? I was frantic though because I was afraid I was having a very adverse reaction to the medication and I really do NOT want to stop taking it. I put off calling the doctor for a little bit because something just didn't seem "right." I figured out later that it was the beginning of my monthly cycle! For the first time in YEARS it snuck up on me because I didn't have the 2 day migraine leading up to it! I had another first when we took James to work tonight. It was raining and I had to go into the store. I've learned that unless I want to be itching for an hour, I have to wear something on my head because raindrops make my scalp itch like nobody's business. I didn't wear my hood..... rain fell right on my head.... and I didn't itch! This might be too good to be true.
Saturday & Sunday
Still no nausea, still no migraine, I'm still thinking pretty clearly, the itching is back on my ears but it's minimal. I'm extremely fatigued and emotional but for now I'm chalking that up to my monthly cycle. So, I survived the first week! Not only did I survive, I feel like I came out of it better! There's no cure for FM but at the rate things are improving I think I can live with it! Special thanks to Patty, Angie, Becky, Bill, Tricia, William, Meredith and Karl... all of you made such a big difference to me this week with your understanding, friendship and love. Looking forward to another great week starting tomorrow!
I was so nervous all day waiting for my 2:50pm appointment. I went over my symptom list that I'd made and checked, double-checked and triple-checked. I verified that I had all of my MRI films and radiology reports together and then I sat and waited. I was so fortunate to have my best friend Meredith to keep me calm and hold my hand, even if it was via text, because I was 2 days off of my anti-depressants and I was a MESS! I was hoping for a new script so when that one ran out at the end of last week, I didn't refill it. The doctor's office was a little chaotic with all of the people who had gotten sick over the weekend, regular scheduled appointments and being in the process of moving to their new location but I finally got out of the waiting room. Of course our first stop was the scale.... I'm not going to reveal the result of that but I've lost a substantial amount of weight over the last few years, close to 70 lbs! I sat down for the work-up with the nurse (she was filling in to help my doctor's care-team) and she was so amazingly sweet when I explained what was going on and showed her my list of symptoms. My blood pressure was actually kind of high for me 120/70 and my temperature was 97.5. Next, I saw my doctor. We went over my medical history with my previous doctor and the neurologist I'd been referred to. We looked at the reports from the radiologist about my MRIs... three on my brain and one on my spine. He looked at my symptom list I'd compiled and we discussed how many things I'd kept to myself because I was afraid of sounding like a hypochondriac. Not only did he tell me that I'd never had a stroke that he could see (something I'd been told by my previous GP), he also told me that based on the results of all of my brain MRIs I do NOT have Multiple Sclerosis! Anyhow, to wrap up Monday.... I was diagnosed with Fibromyalgia. Since I don't have health insurance, my doctor gave me a month worth of samples of the drug Savella. If you're curious about the symptom list I used click here. I literally have experienced all but about 15 of those symptoms in the last 6 months.
Tuesday
Day 1 on Savella! The way it works, you start out taking 12.5mg twice a day, then move to 25mg twice a day and finally 50mg twice a day. Each sample pack is supposed to last 2 weeks but my GP said that it seemed to be having better effects if it was doubled so he told me to use the 12.5 from the first pack then do the 12.5 from the second pack and so on. It might sound crazy but by the end of the day, I SWEAR I was already feeling some good effects from it even with the unbearable nausea. I've decided I'm going to be open and honest about my diagnosis with everyone because it might make it easier for everyone to understand why I can and can't do/remember certain things.
Wednesday
REALLY?! My ears have stopped itching! For those of you who don't know, I've had psoriasis patches on my ears since 1997. They are flaky, bloody, itchy and disgusting and I hate them so much... especially since I can't cover them with my hair because that makes them itch more... but today.... they aren't itching! I noticed it first when I was in bed last night because normally I have to flip my head over every 5 minutes because the ear on the pillow gets too hot and starts itching. I'm also noticing something weird and I think I may have figured it out..... "normal" people think slowly! I can't remember a time when I didn't have 50-100 random thoughts bouncing around my brain at once.... until now. It's almost like being on Vicodin where everything seems to slow down only there's no tiredness and no "fog" to it. Processing thoughts a few at a time is AMAZING! (Addition: I went outside when they were mowing and didn't get stuffed up... could it be possible?)
Thursday
Okay, so I do have a couple complaints. I'm still not sleeping, I might even be sleeping LESS because I'm forcing myself to NOT nap. I want to sleep at night! And the nausea.... oh the horrible nausea. But because I'm seeing such good coming out of this already I'm not ready to give up! I've been doing a lot of reading online and what I've seen so far is that several people have quit Savella in the first few days because of the nausea but those who've made it past the first two weeks say that it's amazing. I'm going to be one of them! I ran into a couple friends when I was at Wal-Mart and one of them is also suffering from FM. It's SO great when you run into someone else because they can give you such validation of what you're experiencing! Tonight, when I took my evening dose, I followed it with a handful (okay, maybe 2 handfuls) of gingersnaps that I picked up at the store. Guess what... no more nausea! I figured I'd have to eat some with every dose for awhile but that's okay because I LOVE feeling this good! (Addition: I also found out that with my new medication, I'll be able to go out in the sun again!)
Friday
Well, today was interesting. I woke up with blood in my urine and my feet and ankles were a little swollen. The swelling is a known side effect, I think it goes along with the rise in blood pressure? I was frantic though because I was afraid I was having a very adverse reaction to the medication and I really do NOT want to stop taking it. I put off calling the doctor for a little bit because something just didn't seem "right." I figured out later that it was the beginning of my monthly cycle! For the first time in YEARS it snuck up on me because I didn't have the 2 day migraine leading up to it! I had another first when we took James to work tonight. It was raining and I had to go into the store. I've learned that unless I want to be itching for an hour, I have to wear something on my head because raindrops make my scalp itch like nobody's business. I didn't wear my hood..... rain fell right on my head.... and I didn't itch! This might be too good to be true.
Saturday & Sunday
Still no nausea, still no migraine, I'm still thinking pretty clearly, the itching is back on my ears but it's minimal. I'm extremely fatigued and emotional but for now I'm chalking that up to my monthly cycle. So, I survived the first week! Not only did I survive, I feel like I came out of it better! There's no cure for FM but at the rate things are improving I think I can live with it! Special thanks to Patty, Angie, Becky, Bill, Tricia, William, Meredith and Karl... all of you made such a big difference to me this week with your understanding, friendship and love. Looking forward to another great week starting tomorrow!
Saturday, April 21, 2012
FM does NOT have to mean FML!
I was diagnosed earlier this week with Fibromyalgia (FM) after a long series of various testing and an even longer history of various symptoms and I'm actually thrilled! It sounds so strange to say that about being diagnosed with a debilitating disease but if you've lived with FM without a diagnosis, I'm sure you understand. I'm relieved to find that there are things that I can do to combat these symptoms so that I might be able to live a "normal" life again (or for the first time, as the case may be)!
I'm creating this blog for a few different purposes.
- Education - For my friends and family. FM is a difficult disease to explain so I'll be sharing links and observations that I feel are relevant to my case in particular.
- Progress - I expect progress and I'd like to keep a record of it, since I spend hours online and have virtually no memory, I think this is the best medium for keeping track.
- Personal Reasons - I'm not sure I even know who I am right now. Without being able to pinpoint when the illness started, there is a good possibility that the person I thought I was isn't "me".... so I guess you're going to be subjected to this strange journey to "find myself" right along with me!
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