So, I've had a crazy string of things happen that caused me to take some time off from blogging....one of the main ones being the loss of my laptop in a dog vs. soda accident. Anyhow, I'm back now, kind of! In the time I was off, I switched to Effexor because the cost was better than Savella but I didn't find it nearly as effective. I *thought* some of my symptoms actually seemed worse with it. I asked the doctor if I could go back to my regular anti-depressant (Celexa) until I could figure out a way to afford Savella and he let me change. That might have been a HUGE mistake. I had heard that coming off of Effexor was really really nasty but I really didn't experience anything too bad, thankfully. What DID happen was that I realized that for as much as I didn't *think* it was working, it was certainly keeping some of the bad symptoms at bay. Welcome to Alzheimer's land! Within days, I felt the fog creeping up on me and I'm back to my forgetful old self now. On top of that, it feels to me that the depression along with it is worse. Panic attacks and headaches are back, too. I think the doctor might think I'm a fruit loop if I call back and ask to change meds again but I see that on the horizon for sure.
I'd like to hear from some of you how you're coping this summer. Last week when our outdoor temps were in the 100+ degrees, I stayed in as much as possible and felt sick the whole time anyhow. Headaches, nausea, fever.... for 3 of those days, my temp was equivalent to 102F. I really might have to invest in more ice packs if the summer gets worse! I've officially turned into one of the elderly that they warn to stay inside when the heat index skyrockets! Who knew you could be elderly at 37?
Let's see, what else happened during my time off? We've still been dealing with Kyle's issues. (Going on a bit of an ADD rant here.) When he was diagnosed, the doctor put him on Strattera at my request. I'm not a fan of stimulants for kids and I've heard so many bad things about them that I wanted to avoid that for as long as possible. The first few days, he'd wake up and take his 18mg and within an hour he'd be out again for a two to four hour nap. He was still having trouble sleeping at night though. With a little bit of research, I found that a lot of people taking Strattera found that it worked best for them at bedtime because it would knock them out and then they could sleep all night. Well, we tried that and it worked fairly well, especially when we added Melatonin to it. Eventually, he was up to the max dosage of Melatonin though and suddenly he wasn't sleeping at all. He'd knock out for two to four hours around 11pm and then that was all she wrote! He'd wake up and be up alllll night and day until the next dose. We tried moving up to 25mg Strattera and that didn't change anything at all. Not only was he not sleeping, he was SO grumpy/irritable/whiny. Anyhow, I got a referral for him to a pediatric neurologist (in December!) and he's off Strattera until then. Amazingly, the first day off of it, he started sleeping again and has only been taking the Melatonin a few nights as needed! Anyhow.... I just had to get that out there because on top of my regular insomnia, I've been staying up with him and so it was about a month or more of no sleep for me!
OH! For those of you who are interested, I'm still not drinking Mt Dew! I haven't experienced any of the "miracles" associated with stopping yet but I'm still hopeful!
Okay, just a couple more things and I'll stop with the rambling. (Maybe I'm the one with ADD?) I'm a Hallmark Channel junkie in the wee hours of the night. They have a great lineup, although, I have to admit, I've seen EVERY episode of The Golden Girls and Frasier at least 5 times! Anyhow, there are two particular episodes of The Golden Girls that really hit home for me. Episodes 103 & 104 are titled "Sick and Tired" (Parts 1 & 2) and they are about Chronic Fatigue Syndrome. I can't remember (obviously, lol) when CFS really came into the public eye but I'm guessing it was about the time the show originally aired. I strongly recommend these episodes to anyone else suffering with any "non-visual" debilitating disease. They hit so close to home for me that I cry every time I watch them because of the total validation I get from them.
Here we go, last thought for the night! Since it's now after 2am, I am officially the mother of a 9-year old boy. It's so strange because you hear other people say "I remember it like it was yesterday" or "Where does the time go?"..... I don't remember it and I don't know where the time went because nothing really exists for me that happened more than a month ago or so. We had an adorable baby book when he was born and I was very lax about filling it out because I had a crazy accurate memory then and thought I'd never need to write it down to remember..... or that when I DID sit down to fill it out, it was no problem because of course I'd remember that, right? Anyhow, I now have a 9-year old, an empty baby book and no recollection of the major-milestones of the last 9 years. There are no first steps, no first words, no rolling over. Does it ever stop? Does it get better or worse? What happens when he moves out on his own? Do I forget his existence if I don't see him for a month at a time? I hate to end on a note like this but these are the things plaguing my mind right now. Thanks for reading, feedback is appreciated and welcome!
Tuesday, July 10, 2012
Tuesday, May 15, 2012
Week 4: May 7 - May 14... plus a few days!
So I didn't write my weekly wrap-up on Sunday because I had my follow-up with the doctor on Monday and I wanted to include it (and then I was just lazy on Tuesday!). Last week, I was so incredibly tired and had lots of joint pain. Also, to kind of add on to my mowing adventure, I had a lot of trouble regulating my temperature. My normal is usually in the 96-degrees but there were several times it would spike up to the high 98s. I don't know if everyone with FM has this or not? As long as I can remember (lol, get it?) I've never had a high fever like a "normal" person. It seems like my temperature drops when I'm really ill rather than going up. Anyhow, not only was my temperature spiking, it was happening often, sometimes changing up to 2 degrees either direction in less than an hour. I brought it up at my appointment and my doctor told me that it was something I'd just have to work around since there's nothing that can be done medically to "fix it". We also talked about the insomnia which has incidentally gotten a lot better since I stopped drinking all of that Mt. Dew. I've still had a few sleepless nights though so I wanted to address it. It seems silly that I'm tired ALL the time but can't sleep when I get into bed at night but that's just the way it is. The doctor told me to try 10mg of Melatonin for the nights I can't sleep. Since it can build up an "immunity" in your system and I don't like to sleep TOO hard, I decided to start with 5mg as needed, I'll keep you posted on how that works. He was going to prescribe something for the joint pain but because of my allergies, I'm pretty limited on what I can take. I'm trying 1500mg of Glucosamine for a month to see if it will help. Also, as much as I loved Savella, I had called the pharmacy to find out how much it was going to cost to stay on it and the price for a month was $175 which is really not in my budget at all. Today I'm on my first full day of Effexor. So far it seems to be doing just as well but I'm having trouble focusing.... not my brain, my eyes. Maybe I'm just tired today? If anyone has had this happen to them, please let me know?
I almost felt bad for my doctor during the appointment. Even though my memory IS getting better, I'd written down questions and concerns that I've had so I wouldn't forget to ask. A lot of them, he just couldn't answer. I think he's an amazing doctor and I don't think it's a lack of medical knowledge, I think there are just too many "gray areas" when it comes to FM. He did his best to give me answers based on the single symptoms alone but he said that they could be different within the spectrum of all that's included in FM. One thing we talked about that still concerns me is memory. My short-term has gotten SO much better but I wanted to know if long-term comes back once it's gone or not. I'm not sure I like the answer I got but again, this is what he knows of and isn't necessarily the "gospel" so it could be different from person to person. His answer, as I understood it, was that sometimes we might have memories but they haven't "imprinted" into our brains so once it's lost, it's lost. It makes me wonder what's required for something to be important enough to you to do this "imprinting" or if you even have an option in what saves and what doesn't. I've actually had similar thoughts along these lines even though I don't want to admit that these things are truly "gone". My thought has been.... when is something a "memory" and when is something just remembered because you've repeated or heard it so many times? Pretty deep stuff, eh?
In closing, I asked if Parkview offers a Fibromyalgia support group and they don't. He suggested I start one! I don't know what all that entails but for now I think I'm happy with my little group of friends I have right now. Besides, support groups make me think of people crying and hugging and I'm not down with all of that touching, lol. As always, I appreciate your support and hope that you've gained something from my ramblings. Some of you have me on Facebook, some of you know me in SL, anyone else feel free to drop me an email at LOLA132@yahoo.com but be sure you put the word Fibromyalgia in the subject line so I don't think you're a hot cam girl or something! Thanks for listening! <3
I almost felt bad for my doctor during the appointment. Even though my memory IS getting better, I'd written down questions and concerns that I've had so I wouldn't forget to ask. A lot of them, he just couldn't answer. I think he's an amazing doctor and I don't think it's a lack of medical knowledge, I think there are just too many "gray areas" when it comes to FM. He did his best to give me answers based on the single symptoms alone but he said that they could be different within the spectrum of all that's included in FM. One thing we talked about that still concerns me is memory. My short-term has gotten SO much better but I wanted to know if long-term comes back once it's gone or not. I'm not sure I like the answer I got but again, this is what he knows of and isn't necessarily the "gospel" so it could be different from person to person. His answer, as I understood it, was that sometimes we might have memories but they haven't "imprinted" into our brains so once it's lost, it's lost. It makes me wonder what's required for something to be important enough to you to do this "imprinting" or if you even have an option in what saves and what doesn't. I've actually had similar thoughts along these lines even though I don't want to admit that these things are truly "gone". My thought has been.... when is something a "memory" and when is something just remembered because you've repeated or heard it so many times? Pretty deep stuff, eh?
In closing, I asked if Parkview offers a Fibromyalgia support group and they don't. He suggested I start one! I don't know what all that entails but for now I think I'm happy with my little group of friends I have right now. Besides, support groups make me think of people crying and hugging and I'm not down with all of that touching, lol. As always, I appreciate your support and hope that you've gained something from my ramblings. Some of you have me on Facebook, some of you know me in SL, anyone else feel free to drop me an email at LOLA132@yahoo.com but be sure you put the word Fibromyalgia in the subject line so I don't think you're a hot cam girl or something! Thanks for listening! <3
Sunday, May 6, 2012
Week 3: April 30 - May 6
A full week on Savella 50mg and the nausea has subsided! Hooray! I had a few setbacks this week in terms of my mental well-being so I'll talk about those.
I haven't been able to be an "active" member of the household for some time now and earlier this week, I decided to change that. We have some pretty picky neighbors around here and we've had the police called on us once before for having our grass too long. It seems like every time J has a day off, it's raining or something else happens that he can't get to it and of course, working third shift doesn't help. I haven't been able to do any of the mowing myself since we moved here, though I DID make myself do it the first year. Every time I tried, I'd have trouble breathing, totally overheat and I'd end up broke out in hives. After each time, I'd have to take a totally cold shower just to get somewhat back to normal and it would still be hours before I could function. Well, with all of the improvements I've been feeling, I thought it was time to try again. It was probably around 10am so it wasn't HORRIBLY hot outside yet and the dew was dry when I went out to the shed and pulled out the mower. I tried a few times to pull the starter cord and that was totally fail, I ended up coming inside and asking J to come start it for me. I went out to the front yard and mowed the patch between the sidewalk and the road and then the patch between the driveway and the neighbor's yard. By that time I was already sweating and having trouble breathing. I went ahead and did about 6 passes in the main part of the front yard but that was it, I couldn't go any further. I felt defeated by my stupid yard. When I came inside, I was flushed and sweating, gasping for breath and my skin was itching. I grabbed a big glass of iced tea and the ice pack out of the freezer and turned on the air conditioner before I plopped down in my chair. Within 20 minutes, the ice pack was completely thawed and even starting to warm yet my body was still sweating and hot. I just kept drinking my tea and eventually after a couple hours I cooled down to what I would call normal. I was in tears. My yard is NOT that large or difficult to mow, I shouldn't have had an issue doing it but there I was. J ended up finishing it even though he had to work that night. I'm going back to the doctor a week from Monday so I'm going to discuss this with him because I can't imagine this is normal at all. (Anyone that's had a similar problem, feel free to contact me, I'd like to know I'm not alone in this!)
The second fail of the week was actually the same night. I haven't really told many people because I wasn't sure I could do it but...... I'm now SIX days Mountain Dew free! I've been drinking at least 40 ounces a day for at least 20 years and I know it's horrible for you, not to mention the caffeine, so I decided to stop. I'm already an insomniac, do I really need that much caffeine? Since I quit, I've been tired a bit earlier in the evening so I'm pretty sure it's helping at least a little. Anyhow, after such an awful day with the yard and all, I was ready for bed at 10:30pm so I went! As I was laying there drifting off, I started having these horrible sensations in my legs. Now, in the past, I've had feelings of trembling in them or even those sudden impulse jerks but I've never experienced anything like this. It was like the impulse jerks but the jerk never came. I could feel the "energy" going down to my legs but then the big twitch never came. It was happening SO frequently that it began to actually hurt, especially in my knees. I laid there for awhile trying to jedi-mind-trick myself.... I thought if I could persuade my body into actually completing the impulse it would feel so much better. Well, I'm no jedi so that didn't work! I finally got out of bed and walked around a bit and stretched some. By the time I got back to bed it was 4:30am though. I hope I described this well enough in text for everyone to understand. I told my friend P what had happened and she said she's had the exact same thing so that made me feel a lot better, in that, at least I'm not alone!
3 weeks down! Onto the next! Thanks for reading! <3
I haven't been able to be an "active" member of the household for some time now and earlier this week, I decided to change that. We have some pretty picky neighbors around here and we've had the police called on us once before for having our grass too long. It seems like every time J has a day off, it's raining or something else happens that he can't get to it and of course, working third shift doesn't help. I haven't been able to do any of the mowing myself since we moved here, though I DID make myself do it the first year. Every time I tried, I'd have trouble breathing, totally overheat and I'd end up broke out in hives. After each time, I'd have to take a totally cold shower just to get somewhat back to normal and it would still be hours before I could function. Well, with all of the improvements I've been feeling, I thought it was time to try again. It was probably around 10am so it wasn't HORRIBLY hot outside yet and the dew was dry when I went out to the shed and pulled out the mower. I tried a few times to pull the starter cord and that was totally fail, I ended up coming inside and asking J to come start it for me. I went out to the front yard and mowed the patch between the sidewalk and the road and then the patch between the driveway and the neighbor's yard. By that time I was already sweating and having trouble breathing. I went ahead and did about 6 passes in the main part of the front yard but that was it, I couldn't go any further. I felt defeated by my stupid yard. When I came inside, I was flushed and sweating, gasping for breath and my skin was itching. I grabbed a big glass of iced tea and the ice pack out of the freezer and turned on the air conditioner before I plopped down in my chair. Within 20 minutes, the ice pack was completely thawed and even starting to warm yet my body was still sweating and hot. I just kept drinking my tea and eventually after a couple hours I cooled down to what I would call normal. I was in tears. My yard is NOT that large or difficult to mow, I shouldn't have had an issue doing it but there I was. J ended up finishing it even though he had to work that night. I'm going back to the doctor a week from Monday so I'm going to discuss this with him because I can't imagine this is normal at all. (Anyone that's had a similar problem, feel free to contact me, I'd like to know I'm not alone in this!)
The second fail of the week was actually the same night. I haven't really told many people because I wasn't sure I could do it but...... I'm now SIX days Mountain Dew free! I've been drinking at least 40 ounces a day for at least 20 years and I know it's horrible for you, not to mention the caffeine, so I decided to stop. I'm already an insomniac, do I really need that much caffeine? Since I quit, I've been tired a bit earlier in the evening so I'm pretty sure it's helping at least a little. Anyhow, after such an awful day with the yard and all, I was ready for bed at 10:30pm so I went! As I was laying there drifting off, I started having these horrible sensations in my legs. Now, in the past, I've had feelings of trembling in them or even those sudden impulse jerks but I've never experienced anything like this. It was like the impulse jerks but the jerk never came. I could feel the "energy" going down to my legs but then the big twitch never came. It was happening SO frequently that it began to actually hurt, especially in my knees. I laid there for awhile trying to jedi-mind-trick myself.... I thought if I could persuade my body into actually completing the impulse it would feel so much better. Well, I'm no jedi so that didn't work! I finally got out of bed and walked around a bit and stretched some. By the time I got back to bed it was 4:30am though. I hope I described this well enough in text for everyone to understand. I told my friend P what had happened and she said she's had the exact same thing so that made me feel a lot better, in that, at least I'm not alone!
3 weeks down! Onto the next! Thanks for reading! <3
Monday, April 30, 2012
Week 2: April 23 - 29
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*
A quick update after posting: Today is my first day on full-strength Savella (50mg) and the nausea is horrid. *Shovels in the gingersnaps*
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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