On Christmas Eve morning, our dear friends were blessed to receive not one but two children. They had been through all the necessary classes and steps and were licensed by the state about a week before Christmas to foster/adopt. They were almost immediately given a four-year-old boy but only had him for a couple of days before he went to live with his father the day before Christmas Eve. As the saying goes, when God closes one door, She opens another. Or, in this case, two as it was only a matter of hours before they were asked if the could take two brothers, a 5 month old and a two year old. Being the wonderful people they are, they opened their home and their hearts to these two little guys.
Yesterday was actually the older one's second birthday. To celebrate, they planned an outing to the zoo which ended up also including the boys' three year old sister, who is still in the crisis shelter awaiting placement. Since everyone who knows me knows what a baby nut I am and we had already planned to get together with them, I said I wanted to go to the zoo, too (I love zoos, although not quite as much as I love babies!) Luckily, they were more than willing for a couple more adult bodies to come along and help wrangle babies/toddlers so hubby and I joined them for the day. I was a little nervous about if all the walking/stroller pushing/toddler lifting would trigger any kind of flare but things went really well and I made it through the day with no pain meds and only a few aches.
I did have to eventually turn the carrying of the sleeping baby over to hubby as he is quite a chunky monkey and I swear their weight doubles when they're sleeping! I was starting to feel the twinges in my neck and shoulders so even though I hated to hand him off, I knew it was the wisest course of action. The kids had a fantastic time at the zoo, a new experience for these little ones who have had an extremely tough life so far. It was more than a little heartbreaking to have to return the sister to the shelter at the end of the trip. She's a sweet little girl and I hope they find a placement for her soon. As much as they would like to, there is just no way my friends could handle an instant family of three ages three and under. They're already a little overwhelmed with an infant and a toddler.
Here's the thing about receiving an instant family: they don't come with anything and you haven't had 9 months to prepare for the arrival. My admiration for our friends is boundless. It seems like they're discovering something new they don't have every hour. Luckily, friends have been coming through with donations of baby gear and other items but there is still so much more that they need, especially warm clothes. If anyone is interested in helping out, let me know. I'm happy to coordinate donations for items, gift cards, or baby clothes and items. Right now the baby is just moving up to 6-9 month items (he's 18 lbs) and big brother is in 24 month or 2T. Everything helps and makes a difference to these two little guys. They might have had a rough beginning but ending up with our friends is the best thing that could have happened to them.
Sunday, December 28, 2014
Friday, December 26, 2014
Slow but steady
Today I have been having one of those days where everything just kind of aches. Except for my left shoulder. That hurts like a mother but only when I try to move it, like in getting dressed. In my other incarnation, I am a...not really a runner since I don't really run but I have runner friends who get mad at me when I say that and tell me I am a runner so I'm never quite sure what to call myself. "Ultra endurance athlete" has been suggested and I'll admit I like the sound of that although it sounds much more athletic than I am. In any case, I've been known to throw on some exorbitantly expensive shoes and plod along a course or a trail for a while.
Since I have my first major race since my fibromyalgia diagnosis coming up, starting on the 29th, and since Santa brought me new Hokas (one of those expensive types of shoes made especially for running) and a variety of other race gear, I decided I would take them out for a spin and see how things went when I started out painful and achy and having taken no pain medication. Accordingly, I changed into my new Raw Threads bamboo Evil Queen (I believe in truth in advertising) hoodie and capris, laced up the new Hokas, and headed out. While I definitely didn't set any speed records, I ended up doing somewhere around 4 miles or a little more and pain levels only maybe increased 1-2. I figure I was between a 4 and a 5 on the pain scale by the time I got back. Not too bad since I hadn't had any pain medication and was probably at a 3 before I ever left the house.
I will admit that I'm a little nervous about this race. When I registered for it a few months ago, I had set myself the rather lofty (for me) goal of doing 100 miles during the 72 hours of the race. At my best, this was an achievable goal although it would definitely be pushing me beyond where I've gone before. My current personal best for any race is the 51 miles I managed during 72 hours in Silverton, CO over Labor Day. That included climbing up and down a mountain 51 times, with 250 feet of elevation gain and loss each mile, at elevation. So doing twice that distance on a flat course not at elevation seemed somewhat realistic when I registered. I would still really like to hit that goal but I'm trying to be realistic and have decided that I'll be satisfied with anything between 100k (62 miles) and 100 miles. For the record, both my regular doctor and my rheumatologist know about the upcoming race and are in favor of it, providing I stick with my plan.
The first part of the plan is to take my pain medication (Norco) on a regular schedule throughout the race, starting with one prior to the start. Since this race is taking place on a one mile loop and we'll have our RV set up about halfway along that loop, the plan is that I will stop for a 15-20 minute break about every 3.5 miles or so, sitting in my fabulous zero gravity recliner with my feet up. Every 6 hours or so, I will take a 2-3 hour nap. The plan is for this to enable me to keep going at a steady pace without ever exhausting myself. Let's just hope my body cooperates. (If you're interested in more on my races, you can check out my much more infrequently updated running blog, DFL:Deb Finishes Last at http://debfinishes.blogspot.com.)
I still haven't taken any pain medication, even Tylenol, and I'm back down to around a 3 on the pain scale so that's good. I'm currently surrounded by sleeping puppies and even my son is zonked out on the sofa. Kicking back in that zero gravity recliner and reading or snoozing for a bit is seeming awfully appealing right now!
Since I have my first major race since my fibromyalgia diagnosis coming up, starting on the 29th, and since Santa brought me new Hokas (one of those expensive types of shoes made especially for running) and a variety of other race gear, I decided I would take them out for a spin and see how things went when I started out painful and achy and having taken no pain medication. Accordingly, I changed into my new Raw Threads bamboo Evil Queen (I believe in truth in advertising) hoodie and capris, laced up the new Hokas, and headed out. While I definitely didn't set any speed records, I ended up doing somewhere around 4 miles or a little more and pain levels only maybe increased 1-2. I figure I was between a 4 and a 5 on the pain scale by the time I got back. Not too bad since I hadn't had any pain medication and was probably at a 3 before I ever left the house.
I will admit that I'm a little nervous about this race. When I registered for it a few months ago, I had set myself the rather lofty (for me) goal of doing 100 miles during the 72 hours of the race. At my best, this was an achievable goal although it would definitely be pushing me beyond where I've gone before. My current personal best for any race is the 51 miles I managed during 72 hours in Silverton, CO over Labor Day. That included climbing up and down a mountain 51 times, with 250 feet of elevation gain and loss each mile, at elevation. So doing twice that distance on a flat course not at elevation seemed somewhat realistic when I registered. I would still really like to hit that goal but I'm trying to be realistic and have decided that I'll be satisfied with anything between 100k (62 miles) and 100 miles. For the record, both my regular doctor and my rheumatologist know about the upcoming race and are in favor of it, providing I stick with my plan.
The first part of the plan is to take my pain medication (Norco) on a regular schedule throughout the race, starting with one prior to the start. Since this race is taking place on a one mile loop and we'll have our RV set up about halfway along that loop, the plan is that I will stop for a 15-20 minute break about every 3.5 miles or so, sitting in my fabulous zero gravity recliner with my feet up. Every 6 hours or so, I will take a 2-3 hour nap. The plan is for this to enable me to keep going at a steady pace without ever exhausting myself. Let's just hope my body cooperates. (If you're interested in more on my races, you can check out my much more infrequently updated running blog, DFL:Deb Finishes Last at http://debfinishes.blogspot.com.)
I still haven't taken any pain medication, even Tylenol, and I'm back down to around a 3 on the pain scale so that's good. I'm currently surrounded by sleeping puppies and even my son is zonked out on the sofa. Kicking back in that zero gravity recliner and reading or snoozing for a bit is seeming awfully appealing right now!
Thursday, December 25, 2014
Merry Christmas!
I hope everyone is having a very merry Christmas! I'm happy to say that today is going much better than my last update. Contrary to my fears, we managed to get everything packed and loaded. Granted, it was several hours later than I had hoped when we finally left the house in the hands of our faithful house/cat sitter and hit the road but the trip was uneventful. I switched between snoozing in the back of the RV and working on Christmas presents.
Yesterday was an up and down day. Trying to adjust to new furniture in a different house was a bit of a challenge. I really miss my recliner! However, when things were getting bad and I just couldn't get comfortable, hubby came through and let me open one of my Christmas presents early: a new zero gravity recliner! For me. Having something that supports my head and let's me put my feet up seems to really help me.
Today is going really well so far. Some random pains here and there but nothing beyond about a 2, now that I slathered Two Old Goats lotion on my painful shoulder. It's one of the things I've discovered that helps me. I plan on putting more on those things here in the near future but for now it's Christmas and there are many presents to open. I hope your day is going well and you are spending it with friends and family, wherever you may be!
Yesterday was an up and down day. Trying to adjust to new furniture in a different house was a bit of a challenge. I really miss my recliner! However, when things were getting bad and I just couldn't get comfortable, hubby came through and let me open one of my Christmas presents early: a new zero gravity recliner! For me. Having something that supports my head and let's me put my feet up seems to really help me.
Today is going really well so far. Some random pains here and there but nothing beyond about a 2, now that I slathered Two Old Goats lotion on my painful shoulder. It's one of the things I've discovered that helps me. I plan on putting more on those things here in the near future but for now it's Christmas and there are many presents to open. I hope your day is going well and you are spending it with friends and family, wherever you may be!
Tuesday, December 23, 2014
Stop the World, I want to get off
Today I just want to cry. I have so much to do today and I hurt so bad. It's almost 11 and I haven't made it out of bed yet. Thank heaven the puppies must be feeling zonked as well because they're not all over me to be fed. Or maybe hubby fed them when he was downstairs earlier. Who knows?
My neck is incapable of holding my head up. Trying to type this makes waves of achiness roll down from my shoulders to my fingertips. Just the thought of getting up and getting dressed exhausts me. Follow this with the knowledge that I need to pack, oversee my son's packing, finish all the Christmas wrapping and packing, and making sure everything is ready for house sitter and I feel so overwhelmed I have no idea where to start. Although I suppose actually getting out of bed would help. But if I do that, what will hold my head up since my neck isn't up to the job today?
Am I paying the price for doing too much yesterday? I got much accomplished, including being on my feet for three solid hours while I finished shopping. Then I spent several hours wrapping presents while sitting on the floor. I did cheat a little this year and mainly relied on gift bags and decorative boxes, actually wrapping that which was absolutely necessary. I had told hubby and son that I was going to make them help this year but still ended up doing it all myself. Why do I have such an issue with asking or letting them help? Both were willing. But this is something I've always done myself and it's hard to turn it over to someone else, even little bits of it.
Sometimes it seems like no one else in the house will do anything if I'm not doing something. Why is no one else stressed about packing and loading the RV? Why do I always have to be the one to make sure everything gets done? I'm so tired. I just don't know how I'm going to get through everything that needs to be done today.
My neck is incapable of holding my head up. Trying to type this makes waves of achiness roll down from my shoulders to my fingertips. Just the thought of getting up and getting dressed exhausts me. Follow this with the knowledge that I need to pack, oversee my son's packing, finish all the Christmas wrapping and packing, and making sure everything is ready for house sitter and I feel so overwhelmed I have no idea where to start. Although I suppose actually getting out of bed would help. But if I do that, what will hold my head up since my neck isn't up to the job today?
Am I paying the price for doing too much yesterday? I got much accomplished, including being on my feet for three solid hours while I finished shopping. Then I spent several hours wrapping presents while sitting on the floor. I did cheat a little this year and mainly relied on gift bags and decorative boxes, actually wrapping that which was absolutely necessary. I had told hubby and son that I was going to make them help this year but still ended up doing it all myself. Why do I have such an issue with asking or letting them help? Both were willing. But this is something I've always done myself and it's hard to turn it over to someone else, even little bits of it.
Sometimes it seems like no one else in the house will do anything if I'm not doing something. Why is no one else stressed about packing and loading the RV? Why do I always have to be the one to make sure everything gets done? I'm so tired. I just don't know how I'm going to get through everything that needs to be done today.
Monday, December 22, 2014
Monday, Monday
There is just little that is better than a weekday that you don't have to get up and go to work on. Combine that with the knowledge that I don't have to go back until January 5 and I am quite happy! I have the Christmas shopping all done (although in typical teen manner, my son sent me a text in the middle of the night to say there was something else he wanted.) Of course, the wrapping of said presents is another matter and that is largely undone. Avoidance, thy name is Deb!
Yesterday I managed to finish several handmade presents and even get them into gift bags. I think the Cymbalta is working since my pain levels have been fairly low - no more than a 3 or 4 and that level towards the end of the day after I'd been pushing it. Even better, so far there have been no side effects. I'll admit, I was worried about nausea given the issues I have with my stomach but so far so good. Hopefully that will continue when I switch to the full dosage at the end of the week.
Today I'm going to share one of the things that most people do without a second thought that I dread. Ready?
Driving.
Yep, you read that right. I never thought I'd say this but I hate the thought of driving. Overall, I avoid it whenever possible. Sometimes, though, that's just not possible. Like, you know, when you work. Even though I don't have work today, I know I have driving ahead of me since I have to take my son to school (25 miles away from home) for drum line practice. Normally, I'd pawn this job off on my husband but he is responsible for getting the RV serviced today. Plus, I need to drop off a present at a friend's house and buy food for the puppies.
So, you might be wondering, why do I dread driving? For the simple fact that it hurts. Short, local
trips aren't bad but that trip to school/work is long enough that I'm pretty much guaranteed to be in pain by the end of it. Pain in my neck from having to hold my head up and focus on what's going on around me (and we won't even get into how hard it is some days to maintain the necessary focus to drive safely!) Pain in my hands and wrists from holding the steering wheel. Pain in my lower back and hips from sitting for a long period without really being able to move. A feeling of weakness in my thighs (I've got to admit I don't have a real clue about this one.) Pain in my foot, ankle, and calf
from moving between the gas and brake pedals.
This is fibromyalgia. It's dealing with pain caused by things most people don't think anything about. For that matter, it's dealing with pain that you can't find any reason for. You certainly didn't do anything to cause or earn it. It's dealing with a myriad and ever changing smorgasbord of symptoms like itching, fatigue, weakness, neuropathy, and just generally feeling like crap. It's exhausting and it's depressing. And one of the hardest things to come to grips with is that it's never going to go away. Fibromyalgia doesn't go away. There's no magic pill or treatment they can give you to cure it. The best you can hope for is to find something, like the Cymbalta and pain meds, that will keep things at a level that allows you to be a functioning member of the human race.
Yesterday I managed to finish several handmade presents and even get them into gift bags. I think the Cymbalta is working since my pain levels have been fairly low - no more than a 3 or 4 and that level towards the end of the day after I'd been pushing it. Even better, so far there have been no side effects. I'll admit, I was worried about nausea given the issues I have with my stomach but so far so good. Hopefully that will continue when I switch to the full dosage at the end of the week.
Today I'm going to share one of the things that most people do without a second thought that I dread. Ready?
Driving.
Yep, you read that right. I never thought I'd say this but I hate the thought of driving. Overall, I avoid it whenever possible. Sometimes, though, that's just not possible. Like, you know, when you work. Even though I don't have work today, I know I have driving ahead of me since I have to take my son to school (25 miles away from home) for drum line practice. Normally, I'd pawn this job off on my husband but he is responsible for getting the RV serviced today. Plus, I need to drop off a present at a friend's house and buy food for the puppies.
So, you might be wondering, why do I dread driving? For the simple fact that it hurts. Short, local
trips aren't bad but that trip to school/work is long enough that I'm pretty much guaranteed to be in pain by the end of it. Pain in my neck from having to hold my head up and focus on what's going on around me (and we won't even get into how hard it is some days to maintain the necessary focus to drive safely!) Pain in my hands and wrists from holding the steering wheel. Pain in my lower back and hips from sitting for a long period without really being able to move. A feeling of weakness in my thighs (I've got to admit I don't have a real clue about this one.) Pain in my foot, ankle, and calf
from moving between the gas and brake pedals.
This is fibromyalgia. It's dealing with pain caused by things most people don't think anything about. For that matter, it's dealing with pain that you can't find any reason for. You certainly didn't do anything to cause or earn it. It's dealing with a myriad and ever changing smorgasbord of symptoms like itching, fatigue, weakness, neuropathy, and just generally feeling like crap. It's exhausting and it's depressing. And one of the hardest things to come to grips with is that it's never going to go away. Fibromyalgia doesn't go away. There's no magic pill or treatment they can give you to cure it. The best you can hope for is to find something, like the Cymbalta and pain meds, that will keep things at a level that allows you to be a functioning member of the human race.
Saturday, December 20, 2014
Happy Saturday
I managed to have a productive and relatively low pain day today. I spent much of it working on Christmas presents for friends and family. The hardest part about what I've been working on is having to spend extensive time sitting on the floor. Still, if I take some what frequent breaks and make sure I'm sitting on a folded blanket instead of directly on the tile, it's not too bad. Just know that if you get a handmade gift from me for Christmas this year, it was definitely made with love!
Pain levels have definitely kicked up a notch tonight, especially in my hands and wrists. That might be a clue that I pushed them too hard. Still, I had enough sense to call it quits with what I was working on when my hands started complaining with every movement.
Took my second dose of Cymbalta tonight. So far, I haven't experienced any side effects at all, knock on wood. And maybe it's the placebo effect but I swear I can tell an effect on my mood already. I definitely feel more level and less overly emotional.
That wraps up today's post. Keeping it short and sweet. Fingers crossed that tomorrow is another good day. I have tons more left to do making those presents and now to get to add another very special one for the new 4-year-old our dear friends welcomed into their family this morning.
Pain levels have definitely kicked up a notch tonight, especially in my hands and wrists. That might be a clue that I pushed them too hard. Still, I had enough sense to call it quits with what I was working on when my hands started complaining with every movement.
Took my second dose of Cymbalta tonight. So far, I haven't experienced any side effects at all, knock on wood. And maybe it's the placebo effect but I swear I can tell an effect on my mood already. I definitely feel more level and less overly emotional.
That wraps up today's post. Keeping it short and sweet. Fingers crossed that tomorrow is another good day. I have tons more left to do making those presents and now to get to add another very special one for the new 4-year-old our dear friends welcomed into their family this morning.
Friday, December 19, 2014
Emotional wreckage
I have spent the past two weeks slowly getting off Paxil, in preparation for starting Cymbalta. So I really haven't been much fun to live with for the past week or so. Naturally, the Universe decides this is a good time to see just how far to take things. Let's travel back to yesterday to put things in perspective...
The follow up appointment with my rheumatologist went well. He went over the additional bloodwork he'd ordered, almost all of which had come back normal. One came back high or positive but since I don't have any of the conditions (psoriasis, psoriatic arthritis, etc.) that one normally associates with this result, he said we're just going to ignore it for now and focus on the Fibromyalgia. We went over my options again and I told him that I'd decided to try the Cymbalta and had just finished weaning off the Paxil. So he wrote the prescription, went over the dosage (30 mg for the first week and then increase to full dosage of 60 mg beginning the second.) We discussed what to do in the event of side effects, he said he wanted to see me in two months and that I needed to have labs done the week before. Labs were submitted electronically, appointment was made and I went off on my merry way.
At this point, I was pretty happy. I hurt but it was only about at a 3 and that was mainly from driving. Picked up my son from his friend's house and we headed home. Then my sister called and shared some rather upsetting health news of her own. She'd gone in to the ER the night before with what she thought was probably an acute flare of her diverticulitis or appendicitis only to have them discover a huge mass taking up most of her abdominal cavity. She had consults and more tests yesterday and is waiting on those results. Hopefully, it will not turn out to be ovarian cancer, which is the fear. Needless to say, this news has me concerned and worried about my sister. This was then followed by the pharmacist telling me that they had to talk to the doctor before they could fill my prescription. They only have to 60 mg of Cymbalta as a capsule and you can't cut a capsule in half so they needed to make sure they could give me 30 mg tablets and have me take 2 for the increase.
This morning, I'm having the joy of what I call temperature control issues. That's where my body can't decide if it's hot or cold and I go back and forth between the two. Since today is massage day, I jumped in to the shower and stood there with the hot water running over me. Reflected on how good that felt and kind of wished I had a chair in there so I could just sit with the water running over me. By the time I was dressed and heading downstairs, however, I was already stressed by trying to carry too much with me and sweating like crazy even though the house is cool.
I'm trying to pick things up and get ready for my massage therapist friend to come over, which does not help the sweating. I notice a travel cup of coffee sitting on the floor and ask my husband if it's his as I'm picking it up. And then it happens. I go completely over the edge. Because I did not like the way he said, "Yes, that's my coffee." I broke down into hysterical tears because I was only trying to help and pick it up so the puppies wouldn't knock it over. I spent the next 10 minutes or so sobbing, even while I'm still trying to get the dogs fed, etc. the thing was, even as it was happening, I knew it was a total over reaction to the situation. That didn't make one bit of difference, though. Now I feel totally wiped out.
On the plus side, I am no longer sweating and my feet are absolutely freezing. My friend should be arriving in the next 15 minutes or so and will set up and spend the next 90 minutes or so giving me a lovely and much needed massage, using a special essential oil formulated for fibromyalgia. If there is any way you can possibly do it, I highly recommend regular massages. Go to someone who knows and deals with clients with fibro. I was really reluctant to have my therapist come to the house for my massages because it felt like such an imposition. She convinced me it wasn't and I am so glad. If you can find someone to do in-house massage, it can really help. If not, at least try to go out and get one on a regular basis. It's one of the best things you can do for yourself.
The follow up appointment with my rheumatologist went well. He went over the additional bloodwork he'd ordered, almost all of which had come back normal. One came back high or positive but since I don't have any of the conditions (psoriasis, psoriatic arthritis, etc.) that one normally associates with this result, he said we're just going to ignore it for now and focus on the Fibromyalgia. We went over my options again and I told him that I'd decided to try the Cymbalta and had just finished weaning off the Paxil. So he wrote the prescription, went over the dosage (30 mg for the first week and then increase to full dosage of 60 mg beginning the second.) We discussed what to do in the event of side effects, he said he wanted to see me in two months and that I needed to have labs done the week before. Labs were submitted electronically, appointment was made and I went off on my merry way.
At this point, I was pretty happy. I hurt but it was only about at a 3 and that was mainly from driving. Picked up my son from his friend's house and we headed home. Then my sister called and shared some rather upsetting health news of her own. She'd gone in to the ER the night before with what she thought was probably an acute flare of her diverticulitis or appendicitis only to have them discover a huge mass taking up most of her abdominal cavity. She had consults and more tests yesterday and is waiting on those results. Hopefully, it will not turn out to be ovarian cancer, which is the fear. Needless to say, this news has me concerned and worried about my sister. This was then followed by the pharmacist telling me that they had to talk to the doctor before they could fill my prescription. They only have to 60 mg of Cymbalta as a capsule and you can't cut a capsule in half so they needed to make sure they could give me 30 mg tablets and have me take 2 for the increase.
This morning, I'm having the joy of what I call temperature control issues. That's where my body can't decide if it's hot or cold and I go back and forth between the two. Since today is massage day, I jumped in to the shower and stood there with the hot water running over me. Reflected on how good that felt and kind of wished I had a chair in there so I could just sit with the water running over me. By the time I was dressed and heading downstairs, however, I was already stressed by trying to carry too much with me and sweating like crazy even though the house is cool.
I'm trying to pick things up and get ready for my massage therapist friend to come over, which does not help the sweating. I notice a travel cup of coffee sitting on the floor and ask my husband if it's his as I'm picking it up. And then it happens. I go completely over the edge. Because I did not like the way he said, "Yes, that's my coffee." I broke down into hysterical tears because I was only trying to help and pick it up so the puppies wouldn't knock it over. I spent the next 10 minutes or so sobbing, even while I'm still trying to get the dogs fed, etc. the thing was, even as it was happening, I knew it was a total over reaction to the situation. That didn't make one bit of difference, though. Now I feel totally wiped out.
On the plus side, I am no longer sweating and my feet are absolutely freezing. My friend should be arriving in the next 15 minutes or so and will set up and spend the next 90 minutes or so giving me a lovely and much needed massage, using a special essential oil formulated for fibromyalgia. If there is any way you can possibly do it, I highly recommend regular massages. Go to someone who knows and deals with clients with fibro. I was really reluctant to have my therapist come to the house for my massages because it felt like such an imposition. She convinced me it wasn't and I am so glad. If you can find someone to do in-house massage, it can really help. If not, at least try to go out and get one on a regular basis. It's one of the best things you can do for yourself.
Thursday, December 18, 2014
Welcome to A New Normal
As I begin to type this, I'm sitting in front of my computer, feeling like I'm burning up from the inside out. The air around me is actually on the cool side but that seems to make no difference. This is just one of the lovely dichotomies that accompanies fibromyalgia. Tomorrow will mark two weeks since my fibromyalgia diagnosis and those two weeks have been full of so many thoughts, feelings, and sensations that it seemed like a good idea to have a place to document them and to chart this journey through living life with fibromyalgia.
And so, A New Normal, is born. This is my place to put down what it's like, how I feel, what I'm doing, and how I'm coping with what is my new normal. Most people who haven't experienced a chronic condition in some way or another don't really understand what it's like. So as I try to understand what living with chronic condition is all about and what it's like on a day to day basis, I thought I'd share those experiences.
Anyone who has gone through the process of trying to be diagnosed with a nebulous chronic condition, one for which there is no definitive test and for which the symptoms can change not only from day to day but from hour to hour, know how frustrating that process is. You go to the doctor because you know something is wrong. They do tests. Those tests all come back negative. You don't push it because, after all, the tests said there was nothing wrong with you. Maybe you go through a period where you feel better (or, at least, you don't feel quite as bad.) Your symptoms change again. Eventually, you go back to the doctor. There are more tests. Those tests all come back negative as well. Again, you don't push it because, after all, the tests said there was nothing wrong. At least, nothing that you didn't already know about, such as osteoarthritis.
The cycle continues. There are times that you think maybe you're just crazy. Maybe it's all in your head. After all, today's symptoms are often different than yesterday's or last week's. People suggest that you're feeling badly because of a variety of things. "We need to start eating better," says your husband. "You should get out and exercise more," says a friend. Slowly, you probably just withdraw a little bit more. You're not as visible on social media because you feel like all you do is post about how badly you're feeling. You hear through the grapevine at work how people comment and how inconsiderate you're being when you take sick days off more frequently than others do. You no longer are able to appear quite as happy and upbeat as you've always tried to be. You wonder how much you should pursue things with your doctor, not wanting to be seen as a hypochondriac when they repeatedly can't find anything wrong with you.
Those last two paragraphs sum up what things have been like for me for the past several months. Longer than that, really, but I regularly convinced myself that I was just "weird" and that it wouldn't do any good to go back to the doctor or tell them about this strange set of symptoms or that strange set of symptoms. However, things got so bad beginning in September of this year that I couldn't NOT do anything any more. I KNEW, with every fiber of my being, that there was something wrong. To be in this much pain, to be this tired, was just not normal. It was starting to negatively impact my quality of life and my being able to do things that I needed to and to be there for my family. I was missing more work than I'd ever missed before because my entire body hurt and I just couldn't *do* anything. Even worse, I felt like I was letting my son down when I had to miss a marching band field competition due to pain issues.
Luckily, I had a scheduled appointment with my doctor coming up. Even thought I'm no longer diabetic since my weight loss surgery in 2013, she still runs blood work every three months just to make sure all my numbers are remaining where they should be and everything is still going well. Over the past year, she's ordered x-rays for various body parts as I've complained of ongoing pain here and there: my hips, my lower back, my right shoulder blade area, my knee, etc. Each time, they've shown nothing but existing osteoarthritis and bone spurring caused by osteoarthritis. I told her how bad things were and how much work I'd been missing and that the pain and fatigue were affecting my quality of life. So she ordered more blood tests, this time looking specifically at things like rheumatoid factor and inflammation identifiers.
Unfortunately, those tests all came back normal as well. "It's probably just the osteoarthritis. Just keep taking the arthritis medication," the nurse told me when she called me with the results. Frankly, I wasn't sure what she meant. One of the things about having gastric bypass surgery is that you are not supposed to take any kind of anti-inflammatory medication afterwards. Which meant that I'd been off my prescription ones since before my surgery and wasn't even allowed to take ibuprofen. Tylenol was the only OTC pain reliever I was supposed to take and my doctor had drilled into me the necessity to watch even the amounts of that due to the effect it can have on your liver. I did have prescription pain medication, for when the arthritis pain was really bad or I was doing a race so I assumed that was what she meant.
I told myself I'd give it another week and see how I felt and if things were still just as bad then, I'd make yet another appointment. That week came and things didn't get any better so I called and they got me in the next day. She went over the latest blood test results with me again, telling me how everything was withing normal ranges. I told her that I was still having major issues. At this point, I had done some research and was hoping she'd give me a referral to a specialist. I couldn't remember if I'd ever told her that my mother has rheumatoid arthritis so I told her about that. I also told her that I have one sister with lupus and another sister with Reynauld's Syndrome, all of which are auto-immune disorders. Luckily, after being my doctor for 15 years and seeing me at least four times a year for the past 7 years or so, she knows me well. I will never forget her telling me, "I think I need to send you to a specialist to find out what's going on. This isn't you. We need to get to the bottom of this."
She put in the request for referral and her office called me the next week as soon as the approval for it came through. (Don't you just love insurance companies who get to decide whether or not you get to see the specialist your PCP recommends??) I called and had an appointment with the rheumatologist that same week. I remember being thrilled when I got there for my appointment and the paperwork they gave me was very brief, with none of the pages of questions asking whether you've ever had a headache or allergies before. Instead, when the doctor came in to see me, he told me he was going to ask me a number of mostly yes or no questions and proceeded to do so, allowing me to elaborate or explain anything I needed to (something those forms never seemed to allow for.) He had copies of all of the blood work my doctor had had done, had the results of the x-rays I'd had done, both of which we discussed, and he did a brief tender point exam.
And then he said words which I never thought I'd be glad to hear. But, honestly, you get to the point where you just want someone to tell you that *something* is wrong with you so that you can figure out what to do to make it better. He told me, "I'm going to order a few more blood tests, just to make sure we didn't miss anything. But I don't see the need for an MRI or more x-rays. Everything points to fibromyalgia." He explained what it was and told me that, if I was interested, there were three drugs currently approved for the treatment of fibromyalgia pain. However, since I'd had a negative reaction to Neurontin (gabapentin), which had been prescribed for neuropathy in my foot, that he wouldn't recommend Lyrica, which is closely related and works in much the same way. He recommended that I do some reading and decide if I was interested in trying either Cymbalta or Sevella before my next appointment. However, if I was interested in either of those, it would mean weaning off my current anti-depressant/anti-anxiety medication, Paxil, before I could try them because being on both is contraindicated.
I did my research and reading and have decided to start by giving Cymbalta a try. I followed an approved plan for weaning off of the Paxil and am hoping that he goes forward with giving me the prescription for the Cymbalta at today's appointment. He'll also go over the results of the additional blood work he ordered, which I had done last week. I am really hoping that I can get going on it and that it is effective. I have a 72 hour race coming up (more on that aspect and how fibro affects that in a future post) from Dec. 28-Jan.1 and would really like to be able to make my 100 mile goal a reality. Time will tell. My appointment is in two hours. I'll let you know how it goes.
And so, A New Normal, is born. This is my place to put down what it's like, how I feel, what I'm doing, and how I'm coping with what is my new normal. Most people who haven't experienced a chronic condition in some way or another don't really understand what it's like. So as I try to understand what living with chronic condition is all about and what it's like on a day to day basis, I thought I'd share those experiences.
Anyone who has gone through the process of trying to be diagnosed with a nebulous chronic condition, one for which there is no definitive test and for which the symptoms can change not only from day to day but from hour to hour, know how frustrating that process is. You go to the doctor because you know something is wrong. They do tests. Those tests all come back negative. You don't push it because, after all, the tests said there was nothing wrong with you. Maybe you go through a period where you feel better (or, at least, you don't feel quite as bad.) Your symptoms change again. Eventually, you go back to the doctor. There are more tests. Those tests all come back negative as well. Again, you don't push it because, after all, the tests said there was nothing wrong. At least, nothing that you didn't already know about, such as osteoarthritis.
The cycle continues. There are times that you think maybe you're just crazy. Maybe it's all in your head. After all, today's symptoms are often different than yesterday's or last week's. People suggest that you're feeling badly because of a variety of things. "We need to start eating better," says your husband. "You should get out and exercise more," says a friend. Slowly, you probably just withdraw a little bit more. You're not as visible on social media because you feel like all you do is post about how badly you're feeling. You hear through the grapevine at work how people comment and how inconsiderate you're being when you take sick days off more frequently than others do. You no longer are able to appear quite as happy and upbeat as you've always tried to be. You wonder how much you should pursue things with your doctor, not wanting to be seen as a hypochondriac when they repeatedly can't find anything wrong with you.
Those last two paragraphs sum up what things have been like for me for the past several months. Longer than that, really, but I regularly convinced myself that I was just "weird" and that it wouldn't do any good to go back to the doctor or tell them about this strange set of symptoms or that strange set of symptoms. However, things got so bad beginning in September of this year that I couldn't NOT do anything any more. I KNEW, with every fiber of my being, that there was something wrong. To be in this much pain, to be this tired, was just not normal. It was starting to negatively impact my quality of life and my being able to do things that I needed to and to be there for my family. I was missing more work than I'd ever missed before because my entire body hurt and I just couldn't *do* anything. Even worse, I felt like I was letting my son down when I had to miss a marching band field competition due to pain issues.
Luckily, I had a scheduled appointment with my doctor coming up. Even thought I'm no longer diabetic since my weight loss surgery in 2013, she still runs blood work every three months just to make sure all my numbers are remaining where they should be and everything is still going well. Over the past year, she's ordered x-rays for various body parts as I've complained of ongoing pain here and there: my hips, my lower back, my right shoulder blade area, my knee, etc. Each time, they've shown nothing but existing osteoarthritis and bone spurring caused by osteoarthritis. I told her how bad things were and how much work I'd been missing and that the pain and fatigue were affecting my quality of life. So she ordered more blood tests, this time looking specifically at things like rheumatoid factor and inflammation identifiers.
Unfortunately, those tests all came back normal as well. "It's probably just the osteoarthritis. Just keep taking the arthritis medication," the nurse told me when she called me with the results. Frankly, I wasn't sure what she meant. One of the things about having gastric bypass surgery is that you are not supposed to take any kind of anti-inflammatory medication afterwards. Which meant that I'd been off my prescription ones since before my surgery and wasn't even allowed to take ibuprofen. Tylenol was the only OTC pain reliever I was supposed to take and my doctor had drilled into me the necessity to watch even the amounts of that due to the effect it can have on your liver. I did have prescription pain medication, for when the arthritis pain was really bad or I was doing a race so I assumed that was what she meant.
I told myself I'd give it another week and see how I felt and if things were still just as bad then, I'd make yet another appointment. That week came and things didn't get any better so I called and they got me in the next day. She went over the latest blood test results with me again, telling me how everything was withing normal ranges. I told her that I was still having major issues. At this point, I had done some research and was hoping she'd give me a referral to a specialist. I couldn't remember if I'd ever told her that my mother has rheumatoid arthritis so I told her about that. I also told her that I have one sister with lupus and another sister with Reynauld's Syndrome, all of which are auto-immune disorders. Luckily, after being my doctor for 15 years and seeing me at least four times a year for the past 7 years or so, she knows me well. I will never forget her telling me, "I think I need to send you to a specialist to find out what's going on. This isn't you. We need to get to the bottom of this."
She put in the request for referral and her office called me the next week as soon as the approval for it came through. (Don't you just love insurance companies who get to decide whether or not you get to see the specialist your PCP recommends??) I called and had an appointment with the rheumatologist that same week. I remember being thrilled when I got there for my appointment and the paperwork they gave me was very brief, with none of the pages of questions asking whether you've ever had a headache or allergies before. Instead, when the doctor came in to see me, he told me he was going to ask me a number of mostly yes or no questions and proceeded to do so, allowing me to elaborate or explain anything I needed to (something those forms never seemed to allow for.) He had copies of all of the blood work my doctor had had done, had the results of the x-rays I'd had done, both of which we discussed, and he did a brief tender point exam.
And then he said words which I never thought I'd be glad to hear. But, honestly, you get to the point where you just want someone to tell you that *something* is wrong with you so that you can figure out what to do to make it better. He told me, "I'm going to order a few more blood tests, just to make sure we didn't miss anything. But I don't see the need for an MRI or more x-rays. Everything points to fibromyalgia." He explained what it was and told me that, if I was interested, there were three drugs currently approved for the treatment of fibromyalgia pain. However, since I'd had a negative reaction to Neurontin (gabapentin), which had been prescribed for neuropathy in my foot, that he wouldn't recommend Lyrica, which is closely related and works in much the same way. He recommended that I do some reading and decide if I was interested in trying either Cymbalta or Sevella before my next appointment. However, if I was interested in either of those, it would mean weaning off my current anti-depressant/anti-anxiety medication, Paxil, before I could try them because being on both is contraindicated.
I did my research and reading and have decided to start by giving Cymbalta a try. I followed an approved plan for weaning off of the Paxil and am hoping that he goes forward with giving me the prescription for the Cymbalta at today's appointment. He'll also go over the results of the additional blood work he ordered, which I had done last week. I am really hoping that I can get going on it and that it is effective. I have a 72 hour race coming up (more on that aspect and how fibro affects that in a future post) from Dec. 28-Jan.1 and would really like to be able to make my 100 mile goal a reality. Time will tell. My appointment is in two hours. I'll let you know how it goes.
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