Disclosure: A lot of this post will come across as self-indulgent. I am aware. Still, it is what it is :)
I've always been a great sleeper. I remember taking daily naps throughout middle school and high school. Sleep was highly respected in my family, which meant that no one would wake you up unless it was necessary. In high school my alarm clock was my dad as he was headed out for work. Before leaving, he would sit at the end of my bed and wake me up with foot massages! He would leave my bedroom door opened and since my room was near the kitchen, I would wake up to marvelous foot massages and the smells of homemade flour tortillas...a vital component to any Mexican's breakfast diet :) As you can imagine, I loved sleep!
My associations to sleep and naps were great. Even as I'm typing this out, I have a big smile on my face just thinking about my old habits! Naps were never seen as a waste of time. They were crucial to my growth my parents always emphasized! And lets just say that after leaving home, college and graduate school continued to be a safe haven in my nap routine. I was very busy, but my schedule was so flexible that I could always schedule in a nap.
Fast forward to my internship and fellowship, after endless years in graduate school, and my glorious naps took a huge hit! I just didn't have the time to take them very often, once a week naps sadly became a luxury. I felt like an addict in withdrawals going from daily naps down to ONE a week. Fast forward a couple of years into my actual, real, full-time, grown-up, M-F job, and my naps were no longer a luxury it felt like, but a necessity. My body craved naps. My husband and friends joked that I could sleep for the rest of my life if they let me. Internally though, I felt like I really needed a nap. I figured it was due to my upbringing and what others called "bad habits" during school. I never realized that in a few months my body would really need naps 1000x more!
When my RA really got going and the flares became a regular part of my life, sleeping and naps became an even bigger need. Now, I truly always feel like I need a nap. The fatigue is so intense that sometimes I am amazed that I get through the day. My body often feels waterlogged. Sluggish and heavy muscles are my constant companions. I never knew, despite my past expertise, how vital a nap could be. Though my husband and friends understand that naps are now part of my self-care process, I now feel guilty about taking them. ME! The person who laughed and was genuinely confused when others said they felt guilty taking naps or saw them as a waste of time. It's funny how when something is no longer in your control, it becomes larger than itself. I have internal debates almost everyday regarding whether I should nap or not. It feels like just another thing RA has complicated for me. Sometimes I am so tired that I just fall asleep without wanting to, other times I "allow" myself to nap, and very rarely now do I look forward to napping for "fun".
I'm finding it easier overtime to not be so hard on myself. I allow for plenty of rest and when necessary, I nap. It's still a great feeling to climb into bed while it's still light outside, spread out across my mattress, and blissfully take a nap. But, there's a nagging thought now of "Fight it, don't let RA take anymore time away from you." I try to remember my previous relationship with sleep, but like a lot of old relationships, it's hard to think of the good when something bad has ruptured it. Yes, I realize I just compared naps to old relationships...it's that serious people!
Friends...please tell me what I'm going to do when I have children? Will I survive?! How?!
February 6, 2016
February 2, 2016
Awareness Day!
Today, February 2nd, is Rheum Awareness day! As a small way to raise awareness, I changed by Facebook profile and cover pictures to show support. When people hear Rheumatoid Arthritis I think a common thought is "old people arthritis"- PC or not, I've heard responses like this. I don't blame anyone, because prior to my own diagnosis, I only had a vague notion of the disease. So, I encourage everyone to share little tidbits about our disease whenever possible today. I struggle with just how much to share (later post on that), but today especially, I will make an effort to raise awareness.
There's a push to identify Rheumatoid Arthritis as Rheumatoid Disease (RD) in order to better capture the seriousness of it. As I think more about this, I can definitely see the different implications the two terms bring up. Arthritis is a very common ailment for many people, so I can see how RA would be categorized as simple joint pain and stiffness. RD implies much more than that. Labels drive me crazy sometimes...funny for someone in the Mental Health profession...but, unfortunately sometimes that is the only way to push forward an agenda. For RA/RD, the agenda (for me at least) should be one of awareness, understanding, research, treatment accessibility, and support.
Dealing with this disease is complicated and it's important for others to realize that, not for pity or attention, but for empathy and validation. Many would say that you only need your own validation in order to deal with something difficult. However, that's in an ideal world. In the real world, in my world, empathy and validation provide the type of support that keeps me pushing through. The type of support that lets me know I can live a full life, despite whatever struggles I may be experiencing.
Today, I hope everyone takes advantage of the impact awareness can have. Awareness is often the first step, so join me spreading some around!
There's a push to identify Rheumatoid Arthritis as Rheumatoid Disease (RD) in order to better capture the seriousness of it. As I think more about this, I can definitely see the different implications the two terms bring up. Arthritis is a very common ailment for many people, so I can see how RA would be categorized as simple joint pain and stiffness. RD implies much more than that. Labels drive me crazy sometimes...funny for someone in the Mental Health profession...but, unfortunately sometimes that is the only way to push forward an agenda. For RA/RD, the agenda (for me at least) should be one of awareness, understanding, research, treatment accessibility, and support.
Dealing with this disease is complicated and it's important for others to realize that, not for pity or attention, but for empathy and validation. Many would say that you only need your own validation in order to deal with something difficult. However, that's in an ideal world. In the real world, in my world, empathy and validation provide the type of support that keeps me pushing through. The type of support that lets me know I can live a full life, despite whatever struggles I may be experiencing.
Today, I hope everyone takes advantage of the impact awareness can have. Awareness is often the first step, so join me spreading some around!
January 24, 2016
The Dilema of High Heels
It's incredible how far reaching the effects of RA are. I've stressed many times because of RA, but I never imagined that RA would lead me to stress over high heels. Yes, high heels.
A few months into RA I realized I had not worn any of my high heels...and let me tell you, I have a ton! My toes, heels, and ankles hurt pretty regularly so I knew wearing high heels to work was no longer an option. This in itself required a period of mourning. It may sound silly and as if I'm exaggerating, but it's not about the heels. It's about feeling restricted in doing simple things, things that you never gave a second thought to. RA somehow manages to make every decision an internal mini debate. It gets exhausting!
Still, I held hope for weekends and special occasions where I could throw on a pair of heels and feel that surge of confidence you feel as you feel taller and stronger the minute you slide your feet into some heels (does that not happen to everyone?). The first opportunity that came up for a test run was a friend's wedding. I elected a simple black wedge with a rounded toe. I figured the wedge would provide some stability and the rounded toe would let my little toes have some breathing room. The ceremony and reception were in downtown (San Antonio, Tx.), so I knew some walking would be involved. I'd recently experienced a flare and intense fatigue was lingering, as such, my husband and I decided we would only stay a max of 3 hours. I figured 3 hours in heels was maybe pushing it, so I brought along a pair of very slim, flats (stuck them in my clutch!).
The walk to the ceremony was about 5-7 minutes and I did pretty good. Minimal discomfort, not much more than pesky toes tingling every so often. The ceremony was held outside by the riverfront, but we were able to sit down throughout it. I did pretty good throughout the reception, mainly because we opted to sit down for the most part and talk with friends. 2 hours in and it started to rain! The venue was half outside, half inside, so thankfully there was a place to hang out. Side Note: The bride and groom kept dancing in the rain- it was adorable! Even though our 3 hours weren't up, we decided to head out in case the rain got heavier (I would really be screwed then). The walk back was a bit more uncomfortable than going in, but it was do-able. However, I did kick those heels off as soon as we were in the truck :)
This little test run made me feel much better. Just knowing heels were an option gave me some satisfaction. Since the wedding (~6 months) I haven't worn heels again. I haven't had a lot of occasions to justify potential discomfort and pain, so flats and boots have been my go-tos. I've thought on and off about donating or selling a few pairs, but I just can't part with them. So, I just gaze at them all lined up in their pretty little clear boxes. I try not to think too much about how much money I've invested in heels, otherwise I start to cringe. I'm still holding out hope that one day I can regularly wear them again, but the reality of me wearing my 30+ pairs of sky-high designer heels are pretty dismal at this point. I play with the idea of wearing them a few hours at work everyday, but between the stiffness and fatigue in the morning, I honestly never remember. Even if I did remember, I doubt I would have the energy to give it a go. Still, I hold hope!
I'm curious about others' experience. Do you still wear high heels? Have you gotten rid of them? Am I the only one who even thinks about this?
A few months into RA I realized I had not worn any of my high heels...and let me tell you, I have a ton! My toes, heels, and ankles hurt pretty regularly so I knew wearing high heels to work was no longer an option. This in itself required a period of mourning. It may sound silly and as if I'm exaggerating, but it's not about the heels. It's about feeling restricted in doing simple things, things that you never gave a second thought to. RA somehow manages to make every decision an internal mini debate. It gets exhausting!
Still, I held hope for weekends and special occasions where I could throw on a pair of heels and feel that surge of confidence you feel as you feel taller and stronger the minute you slide your feet into some heels (does that not happen to everyone?). The first opportunity that came up for a test run was a friend's wedding. I elected a simple black wedge with a rounded toe. I figured the wedge would provide some stability and the rounded toe would let my little toes have some breathing room. The ceremony and reception were in downtown (San Antonio, Tx.), so I knew some walking would be involved. I'd recently experienced a flare and intense fatigue was lingering, as such, my husband and I decided we would only stay a max of 3 hours. I figured 3 hours in heels was maybe pushing it, so I brought along a pair of very slim, flats (stuck them in my clutch!).
The walk to the ceremony was about 5-7 minutes and I did pretty good. Minimal discomfort, not much more than pesky toes tingling every so often. The ceremony was held outside by the riverfront, but we were able to sit down throughout it. I did pretty good throughout the reception, mainly because we opted to sit down for the most part and talk with friends. 2 hours in and it started to rain! The venue was half outside, half inside, so thankfully there was a place to hang out. Side Note: The bride and groom kept dancing in the rain- it was adorable! Even though our 3 hours weren't up, we decided to head out in case the rain got heavier (I would really be screwed then). The walk back was a bit more uncomfortable than going in, but it was do-able. However, I did kick those heels off as soon as we were in the truck :)
This little test run made me feel much better. Just knowing heels were an option gave me some satisfaction. Since the wedding (~6 months) I haven't worn heels again. I haven't had a lot of occasions to justify potential discomfort and pain, so flats and boots have been my go-tos. I've thought on and off about donating or selling a few pairs, but I just can't part with them. So, I just gaze at them all lined up in their pretty little clear boxes. I try not to think too much about how much money I've invested in heels, otherwise I start to cringe. I'm still holding out hope that one day I can regularly wear them again, but the reality of me wearing my 30+ pairs of sky-high designer heels are pretty dismal at this point. I play with the idea of wearing them a few hours at work everyday, but between the stiffness and fatigue in the morning, I honestly never remember. Even if I did remember, I doubt I would have the energy to give it a go. Still, I hold hope!
I'm curious about others' experience. Do you still wear high heels? Have you gotten rid of them? Am I the only one who even thinks about this?
January 21, 2016
We Don't Know, Part 2
When I finally got in to see my PCP my nerves were frazzled. I'd spent the previous 3 days in pain and in fear. On the 2nd day of waiting, my hips started to hurt and that's when I really lost it. I cried to my husband pretty much daily. Most of the tears were for the unknown. It's really hard waiting to find out what's going on. My PCP is amazing and saw me immediately the day of the appointment. Right away he said "Let's run a bunch of tests to rule things out, it's either an allergic reaction or a joint condition." I tearfully nodded my head while he went about his physical exam. He made a follow-up appointment for me in 1 week (he thankfully rushed the test results) and re-filled my pain meds- at this point he took me off of steroids because he didn't want to overmedicate me without knowing what was going on.
Let me tell you, 1 week is a LONG time when you're awaiting test results. I did a lot of research into RA during that week and scared myself like no other! I've found that medical forums come in extremes, the really bad or the really good. Hearing stories of mobility issues, going on disability, joint replacements, chemotherapy (which at the time boggled my mind!), and post-partum flares had me terrified. Once you go down the rabbit hole of Google it's hard to stop. This was a very scary time. The uncertainty one often experiences in situations like this is often worst than the reality. As humans we tend to be really good at worst-case scenarios, it can definitely be a slippery slope.
Once I got in to see my PCP again he got straight to the point (just how I like my doctors). "It's not an allergy and it's not RA. It might be Lupus, I don't know. I'm sending you to a Rheumatologist." Not RA?! Lupus?! This news really threw me for a loop. Lupus had never crossed my mind. Lupus is a disease I have very not-so-good ties to. I saw my mom's cousin (by marriage) pass away from Lupus complications and my husband's aunt also passed away from Lupus complications. It could NOT be Lupus! The fear at that point sunk deep into my stomach. I managed to keep it together until I was in my car and then I broke down. I called by husband sobbing, I was so scared. I even tear up now thinking about it.
Long story short (well, shorter...), my PCP pulled strings and got me to see the Rheumatologist just 1 week later! I didn't realize at the time how lucky I was to have such an advocate in my PCP. A lot of people have to wait weeks, even months, to get specialty follow-up. My Rheumatologist was thankfully much like my PCP in terms of communication, no sugar coating and straight-forward. "You have RA, I don't have a doubt. Even though you don't test positive for the factor, I know it's RA." Her self-assuredness was comforting, even if the news was unwelcome. I know for some people this type of communication style might be off-putting, but for me it's just right. I don't need a warm provider, I need a confident one. She sent me off for more intensive lab work and made a follow-up for me in 3 days. Sure enough, upon follow-up she confirmed the diagnosis. My sedimentation rate, c-reactive protein, and anti-CCP all indicated RA.
My Rheumatologist was initially hopeful that I would achieve full remission. She stated that most people don't get diagnosed or treated for RA for years. Due to my acute onset (for the most part, although I had a few earlier signs), she wanted to be aggressive in treatment. According to her (and a lot of great research), early aggressive treatment plans can lead to remission in a lot of patients. Particularly for those with symptoms caught really early on. So, Methotrexate and Enbrel were prescribed that day, along with Prednisone.
Well....it turns out I did not achieve remission. In the past year, I've had to stop Methotrexate due to elevated liver enzymes, Enbrel did not alleviate any symptoms, nor did Humira (Humira only gave me severe acne all across my chest and back). I'm currently on Orencia and *fingers crossed* seem to be doing a bit better. I constantly flare (2-3x/month), I'm on FMLA at work, and everyday something hurts. Since Feb 2015 (when I was diagnosed) I've had 3 pain-free days. Three! Otherwise, my "normal" pain level is 3/10, and flares shoot me up to a 8-9/10.
I know I am incredibly lucky to have been diagnosed and treated so early. The horror stories I hear about delayed diagnoses, mis-diagnoses, and just awful doctors who are dismissive of symptoms make me grateful for my providers. Still, it sucks. It totally and completely sucks. This is just my story. One of many unfortunately. My goal is to use this space so that I can make sense of what often feels like a whirlwind disorder. I don't have any answers, just my perception of my disease. I hope this little journey of mine can help someone else with theirs.
Let me tell you, 1 week is a LONG time when you're awaiting test results. I did a lot of research into RA during that week and scared myself like no other! I've found that medical forums come in extremes, the really bad or the really good. Hearing stories of mobility issues, going on disability, joint replacements, chemotherapy (which at the time boggled my mind!), and post-partum flares had me terrified. Once you go down the rabbit hole of Google it's hard to stop. This was a very scary time. The uncertainty one often experiences in situations like this is often worst than the reality. As humans we tend to be really good at worst-case scenarios, it can definitely be a slippery slope.
Once I got in to see my PCP again he got straight to the point (just how I like my doctors). "It's not an allergy and it's not RA. It might be Lupus, I don't know. I'm sending you to a Rheumatologist." Not RA?! Lupus?! This news really threw me for a loop. Lupus had never crossed my mind. Lupus is a disease I have very not-so-good ties to. I saw my mom's cousin (by marriage) pass away from Lupus complications and my husband's aunt also passed away from Lupus complications. It could NOT be Lupus! The fear at that point sunk deep into my stomach. I managed to keep it together until I was in my car and then I broke down. I called by husband sobbing, I was so scared. I even tear up now thinking about it.
Long story short (well, shorter...), my PCP pulled strings and got me to see the Rheumatologist just 1 week later! I didn't realize at the time how lucky I was to have such an advocate in my PCP. A lot of people have to wait weeks, even months, to get specialty follow-up. My Rheumatologist was thankfully much like my PCP in terms of communication, no sugar coating and straight-forward. "You have RA, I don't have a doubt. Even though you don't test positive for the factor, I know it's RA." Her self-assuredness was comforting, even if the news was unwelcome. I know for some people this type of communication style might be off-putting, but for me it's just right. I don't need a warm provider, I need a confident one. She sent me off for more intensive lab work and made a follow-up for me in 3 days. Sure enough, upon follow-up she confirmed the diagnosis. My sedimentation rate, c-reactive protein, and anti-CCP all indicated RA.
My Rheumatologist was initially hopeful that I would achieve full remission. She stated that most people don't get diagnosed or treated for RA for years. Due to my acute onset (for the most part, although I had a few earlier signs), she wanted to be aggressive in treatment. According to her (and a lot of great research), early aggressive treatment plans can lead to remission in a lot of patients. Particularly for those with symptoms caught really early on. So, Methotrexate and Enbrel were prescribed that day, along with Prednisone.
Well....it turns out I did not achieve remission. In the past year, I've had to stop Methotrexate due to elevated liver enzymes, Enbrel did not alleviate any symptoms, nor did Humira (Humira only gave me severe acne all across my chest and back). I'm currently on Orencia and *fingers crossed* seem to be doing a bit better. I constantly flare (2-3x/month), I'm on FMLA at work, and everyday something hurts. Since Feb 2015 (when I was diagnosed) I've had 3 pain-free days. Three! Otherwise, my "normal" pain level is 3/10, and flares shoot me up to a 8-9/10.
I know I am incredibly lucky to have been diagnosed and treated so early. The horror stories I hear about delayed diagnoses, mis-diagnoses, and just awful doctors who are dismissive of symptoms make me grateful for my providers. Still, it sucks. It totally and completely sucks. This is just my story. One of many unfortunately. My goal is to use this space so that I can make sense of what often feels like a whirlwind disorder. I don't have any answers, just my perception of my disease. I hope this little journey of mine can help someone else with theirs.
January 20, 2016
We Don't Know, Part 1 of 2
I noticed the slight stiffness and swelling in both my hands as I woke up that morning. I'd experienced the same thing a handful of times throughout the years, so I thought nothing of it. Too much salt. That's what I had been told during undergrad when it first happened. Given my dietary craves, it made total sense.
Throughout the day the stiffness and swelling increased. I continued to brush it off and pushed aside any worries. It was my day off, so all I was doing was watching TV. My usual days of typing and other hand-related activities weren't present. In the evening, while eating a hamburger, I finally realized the extent of the pain and swelling. I could barely hold the burger. My fingers felt like an overstretched exercise band ready to pop. I slowly ate the burger and entered into a slightly surreal state where I was hyper-focused on holding the burger while simultaneously trying to make sense of the difficulty I was having manipulating my hands and fingers. Still, I only mentioned in passing to my husband that my hands and fingers hurt.
It wasn't until I tried to brush my teeth for the night that I realized my hand was unable to hold unto something so thin as a toothbrush. That's when it hit that something was really wrong. "I think I'm going to urgent care" I told my husband. I don't quite remember his reaction, but I'm sure it was one of surprise and potentially one of confusion. Outwardly, the situation seemed to have escalated quickly. When we got to the truck, my husband had to open the door and buckle me in; my hands were no longer cooperating at all. On the way over there we threw out ideas: Is it an allergic reaction? Did I somehow fracture both my hands without realizing it? Is it cancer?! (hypochondriac...yes, that word had come up before!). Allergic reaction. It had to be, at that point both my hands had swelled significantly and were bright red.
It was around 10pm and the urgent care center, which turned out to be a mobile ER, was empty. They processed me in and the nurse just sort of frowned the entire time saying "Hmmmm, I'm not sure what's going on." For some reason that made me feel better. Surely if it was serious they would know right away! After a steroid shot, pain meds, and x-rays, my hands were still very swollen and at this point very painful. "I'm at an 8/10 !" I kept saying throughout my time there. A favorite pain question at any medical center as many of you know. After 1.5 hours of no improvement and normal x-rays, I was given an injection of morphine via my IV, along with some fluids. The initial surge of morphine made my stomach flip, but did little else. Eventually the ER doctor came in and said "Look, we don't know what's going on. It might be an allergic reaction or maybe some sort of arthralgia." Looking back, I paid very little attention to the second option. "Go to your PCP as soon as you can" she said. I was promptly discharged after that with some steroid and pain pills.
I couldn't see my PCP for 3 days after that night. I spent those 3 days taking all my medications and icing my hands on and off. The pain medication numbed some of my pain, but driving and handling small objects was still hard. I started to Google possibilities, which is never a good idea! Rheumatoid Arthritis came up as an option. As I read through the list of symptoms I knew in my heart that it was RA. Still, without confirmation, the diagnosis still felt foreign and hard to relate to.
Part 2 coming soon...
Throughout the day the stiffness and swelling increased. I continued to brush it off and pushed aside any worries. It was my day off, so all I was doing was watching TV. My usual days of typing and other hand-related activities weren't present. In the evening, while eating a hamburger, I finally realized the extent of the pain and swelling. I could barely hold the burger. My fingers felt like an overstretched exercise band ready to pop. I slowly ate the burger and entered into a slightly surreal state where I was hyper-focused on holding the burger while simultaneously trying to make sense of the difficulty I was having manipulating my hands and fingers. Still, I only mentioned in passing to my husband that my hands and fingers hurt.
It wasn't until I tried to brush my teeth for the night that I realized my hand was unable to hold unto something so thin as a toothbrush. That's when it hit that something was really wrong. "I think I'm going to urgent care" I told my husband. I don't quite remember his reaction, but I'm sure it was one of surprise and potentially one of confusion. Outwardly, the situation seemed to have escalated quickly. When we got to the truck, my husband had to open the door and buckle me in; my hands were no longer cooperating at all. On the way over there we threw out ideas: Is it an allergic reaction? Did I somehow fracture both my hands without realizing it? Is it cancer?! (hypochondriac...yes, that word had come up before!). Allergic reaction. It had to be, at that point both my hands had swelled significantly and were bright red.
It was around 10pm and the urgent care center, which turned out to be a mobile ER, was empty. They processed me in and the nurse just sort of frowned the entire time saying "Hmmmm, I'm not sure what's going on." For some reason that made me feel better. Surely if it was serious they would know right away! After a steroid shot, pain meds, and x-rays, my hands were still very swollen and at this point very painful. "I'm at an 8/10 !" I kept saying throughout my time there. A favorite pain question at any medical center as many of you know. After 1.5 hours of no improvement and normal x-rays, I was given an injection of morphine via my IV, along with some fluids. The initial surge of morphine made my stomach flip, but did little else. Eventually the ER doctor came in and said "Look, we don't know what's going on. It might be an allergic reaction or maybe some sort of arthralgia." Looking back, I paid very little attention to the second option. "Go to your PCP as soon as you can" she said. I was promptly discharged after that with some steroid and pain pills.
I couldn't see my PCP for 3 days after that night. I spent those 3 days taking all my medications and icing my hands on and off. The pain medication numbed some of my pain, but driving and handling small objects was still hard. I started to Google possibilities, which is never a good idea! Rheumatoid Arthritis came up as an option. As I read through the list of symptoms I knew in my heart that it was RA. Still, without confirmation, the diagnosis still felt foreign and hard to relate to.
Part 2 coming soon...
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