A Day of Ups and Downs

sushi

If you read my post from last night, you know I was up late waiting for my eBay auction to end. I’m happy to say that I’m the proud owner of a sushi chef nutcracker (pictured above). So, my day started out on a high note.

My kids religion class was canceled this morning because the roads were very icy here in CT. People were posting on Facebook all day about accidents in town and nearby, so my plan was to stay in our jammies and watch television. My kids got a huge kick out of the Game Show Network. It was actually a really fun few hours until it got awkward when the questions on Family Feud included things like, “Name something that would be surprising for your husband to bring to bed on your honeymoon?”

Yep! When I yelled out “book” the kids all wanted to know why. I opted not to seize the moment and discuss what a man and a woman usually do in bed on their honeymoon.

My girls really wanted to go see Into the Woods this evening. I’ve been going back and forth about it because some people have said it’s too scary (they are almost 8 and almost 10). Others have said that the graphic stuff isn’t shown, so it would be fine. I don’t think they’ll pick up on the sexual things from the wolf (another reason not to prolong our Family Feud conversation), but I don’t want to pay all that money and have to leave because my youngest daughter is too scared.

When I finally got the urge to shower today, I went downstairs to grab something and water was pouring into my finished basement from two different spots. Last night we thought a bit of water was coming in from a pipe, but today it was clear that Mother Nature was to blame.

As I freaked out running back and forth to the two spots with the shop vac, I realized I wasn’t going to be able to keep that up for very long. My husband finally got home and began to build a trench leading the water from the crazy ice and rain away from the house.

Within about 30 minutes, the water slowed way down and it’s all but stopped now. It wasn’t what I planned on doing today, and it pretty much sucked. Despite sucking for the obvious reasons, add to that being on my hands and knees with the shop vac and that sent my joints into complete hell and subsequently canceled our movie plans. Actually, we also heard the roads still weren’t great, so that helped make my mind up to take the kids tomorrow. Praying that’s the right decision.

I’ve been researching weight loss plans to deal with the weight issues that having been, well, weighing me down for a while now. I need something that takes a lot of the guesswork out. I tried Take Shape for Life last year and I actually liked some of the food, but I didn’t do so well. I don’t know what to attribute my failure to. I think after the really tough first week and only losing three pounds, I was frustrated. People in the online support group were reporting 7-10lbs gone and I had a measly 3.

Anyway, I think I’m going to try another program that involves two shakes (or meal bars) per day and a healthy meal. They actually want you to eat every three hours. So what’s going to be different this time? I really wish I could answer that. The drive is there. I need to suck it up and do it. The programs I looked at included Ideal Shape, Shakeology, Isagenix (which a friend has been trying to get me to do) and 310.

Based on the ratings and the prices, I chose Ideal Shape. I’m going to give it my best shot. I hope to be able to order it on Tuesday. Up until yesterday I had my heart set on Isagenix. Two friends had great results, but it’s about $500 if I include the snack I’d need to get through the cleanse days. It also didn’t get rated as high as Ideal Shape in some categories.

Basically, the problem is me. I don’t feel that I’m eating enough to be this weight, but I’m going to give a serious two months to this program while I’m waiting for an appointment with another endocrinologist who specializes in endocrine issues other than diabetes. I tried taking the Metformin to treat the PCOS, but it made me nauseous and I didn’t have the insulin resistance that goes along with PCOS. I wanted to try something so bad, but I don’t want to be on a medication if I don’t truly need it…especially one that makes me nauseous.

This program also has some CDs to help me with self-hypnosis. Yep, I’m three shades of crazy, but I either have to be all in or not do it at all. I’m in. I want to look like myself this summer, not some fat version of me. The other thing is, losing weight has to help relieve the knee and ankle pain (I hope) from the rheumatoid arthritis. I also plan to chronicle my journey (even if it’s boring as hell) as a way to hold myself accountable.

I’ve also been going back and forth about going back on Plaquenil to deal with my arthritis pain. Also on my list to do this week would be finally going to get that blood test that my rheumatologist wanted me to get. I think it was called a Vectra blood test. It’s supposed to look deeper into the issue of RA, and once and for all have a definitive answer. Every specialist has something different to say.

Most agree that I have fibromyalgia. One thinks I have both fibro and RA. And let’s not forget the Raynaud’s. Can I just say that winter completely sucks with Raynaud’s? My fingers and toes are like painful icicles. As far as I know, though, there’s not much that can be done for it. That which does not kill us…oh whatever!

Advertisements

Been Diagnosing Myself Again

tiredkitten

Usually I’m the first to admit that I spend way too much time on the Internet researching my illness, but in many cases I’ve been 100% correct. Case in point, my infertility years. I read every possible thing I could get my hands on about miscarriage and ovulation and medications to make you ovulate. I diagnosed myself with PCOS despite not being glucose intolerant and went into the reproductive endocrinologist to explain my diagnosis. He agreed with me. Why? Because I know what the hell I’m talking about!

So I starting writing a blog the other night after seeing my ALS Ice Bucket challenge video. I was very upset seeing myself on video. Do I look horrid? Well, no, but I don’t look like me! My face is so puffy and I’m way overweight. All I could think about was that everyone must be thinking–wow, she didn’t age well since high school. Should I care? No! Did I? Kind of! I don’t Photoshop my pictures to impress anyone. I’m a fairly simple girl. I just want my regular clothes to fit. That’s all!

So I started writing the blog and it got me thinking about my appointment this coming Tuesday with my rheumatologist and how I need to prepare. Overall, my pain level has been significantly better in the warmer weather. I’m going to discount the week in Disney when I completely overdid it and sent myself into a terrible flare (I will come back to that in a minute, though). My main concern is the exhaustion. Lately, I will go teach my Pilates class in the morning, and I can hardly keep my eyes open on the way home. I get home and sleep for 1-2 hours, and it’s not a light nap. It’s a deep sleep, so deep, in fact, that I don’t hear the phone.

It’s pretty much the same scenario if I run to the store. I need to rest afterward. This just isn’t normal and it is getting worse instead of better. Now I’m not naive enough to think my pain level is going to stay this way when it gets colder, and I want a plan in place to deal with the winter. I can’t do another winter med-free, or periodically using pain meds. It was awful. I also don’t want to use Lyrica or Cymbalta because of their side effects of weight gain.

Given that weight gain is a big concern for me, when they both have a side effect of severe weight gain, that’s not a road I want to go down. Now gabapentin had less side effects, but I got off course while looking that up and started reading more about thyroid issues and Hashimoto’s Disease. Now my thyroid levels were in the normal range, but I happen to exhibit every other symptom of hypothyroidism. Chronic hoarse throat/laryngitis, severe exhaustion, weight gain, hair loss, sensitivity to cold, joint and muscle pain, puffy face, muscle weakness…HELLO…This is me! Going back to my Disney trip when I ran my body ragged, as I started to feel the pain, I lost my voice…completely. I couldn’t do anything more than whisper for our last two days, and then I came home and slept for 3 days straight before getting and antibiotic that was called in for a sore throat/sinus infection.

Now I need to convince my doctor that there are different ranges of normal for TSH, T3, and T4. Hashimoto’s is actually an autoimmune disease that affects the thyroid causing hypothyroidism. So then I thought, what if I don’t even have RA because I’m non-serum RA and what if my correct diagnosis is Hashimoto’s and fibromyalgia? No one is arguing an autoimmune disease. My ANA level is high. I’m sure my rheumy with do more blood work after our chat this Tuesday. I don’t actually think there will be much he can do for me, so in the art of working around him, I’m calling Monday to make an appointment with an endocrinologist.

I was feeling positive with this new direction and I figured, let me check with my aunt to see if she knows of any family history. I seemed to remember something about my grandmother taking thyroid medicine. Well, she just got back to me and as it turns out both my grandmother and my uncle (my mom’s brother) had/have hypothyroidism and my grandmother had all of the same symptoms I do. I don’t know why this made me cry. I read it after I pulled into my driveway and turned the car off and I sat there for a moment and cried.

Maybe it’s that connection. Maybe it’s that I could be on the right path to figuring out this awful autoimmune puzzle. I think I have my work cut out for me to get a doctor to treat me, even if I’m borderline, but I’m sure going to try! I will have to see how my bloodwork from this week comes out. Any recommendations on thyroid bloodwork? I’m not really on meds that would affect it. Should I go first thing in the morning? Also anyone with Hashimoto’s, please feel free to leave a comment letting me know some of your symptoms and if you were misdiagnosed in the beginning. There’s always the possibility that I have RA, Fibro, and Hashimoto’s…let’s not go there yet.

I’m focusing on the positive of having something to discuss with my rheumatologist and perhaps a new endocrinologist. I’m not stopping until I get some answers.

 

Memories…

p_emerald_01x

It’s so funny how two people can have very different memories of the same exact situation. I had a former college fling contact me on Facebook last week. I hesitate to even call it a fling…it was college, wasn’t everything a fling? He was actually one of the first people I met in college and he was in a few of my classes. We hung out a lot and became friends. I remember doing a lot of things together as friends and one or two evenings in which there was a little kissing.

Anyway, that’s not the point of my post. The post is that I ended up just having a hour long conversation with him and it was so nice to catch up. Life has been good to him, which is always nice to hear. It was just funny to hear him talk about our college days and our little fling. According to him, the reason we “broke up” was because I went back to my crazy boyfriend (I’ll explain about him in a moment). According to me, he was in love with another girl that was away at another college. I thought things just never really went anywhere, and there was no real drama or breakup, we were just always friends, and then the following year we weren’t in classes together and I didn’t see him much.

The story he remembered was a day the car I was borrowing broke down. I commuted to the school and it was about an hour away. I needed my ex-boyfriend to come up and help me with the car because it belonged to his brother, and his brother wasn’t around. The plan was that he was going to call me when he got to town and I’d meet him back at the car, but in the meantime I was going to go to work with my friend Steve, who worked as a camp counselor with young kids in a day program. I had so much fun that day with the kids, until my ex-boyfriend showed up like a lunatic wanting to know if I was sleeping with Steve.

Let me giving a quick overview of my ex. I was young–very young. He was older, attractive, but extremely jealous and a bit crazy. He cheated on me and we broke up, but apparently the thought that I could be interested in someone else really bothered him. I never did go back to him, but he always seemed to be lurking around for a long time after that.

I thought Steve went back to the girlfriend, but I guess that never happened. Tonight he told me that he really wanted to date me at that time, but thought I was going back to the crazy ex. Funny how things work out when people don’t communicate. I had no idea the guy was even that interested. That’s what no self-esteem does for you! I never thought that someone like him, who I saw as this great guy, would be interested in me. I thought I had to settle for the crazy ones!

It was nice to catch up and fun to relive some memories. Hard to believe how long it’s been, but it was nice to swap stories about our lives and kids, etc. There aren’t a lot of people from my past that I’m not in contact with already that I’m dying to hear from, but I was really happy to hear from him…even if he did post a picture of me with really big 1991 hair!

Tonight was the finale of The Wizard of Oz. I am officially exhausted. I’m really proud of my daughter. I know she has a long way to go in terms of stage presence and acting, but for the first time, she wasn’t nervous or panicked going on stage, with the exception of the first night. As much as all these shows were a lot on me, I think they helped her over her fear.

My body is super tired, though. The problem is that my mind doesn’t agree with my body. I just a half an Ambien to try and get some rest. The chilly nights have also been a little tough on my arthritis. Last night my hip was pretty bad, and tonight my toe is bothering me. It’s manageable, but I’m really looking forward to sleeping in tomorrow and relaxing. I am hoping not to have to get out of bed until 10AM.

I do have to talk about a new symptom, one that I did bring up to my doctor, but he kind of shrugged off last time. My one eye feels like it gets so dry and nothing helps. It gets to the point where it feels like there is something inside of it. I know this can be a symptom of sjogren’s syndrome, which is another autoimmune disease, but my rheumatologist didn’t think it was that since it was mainly one eye. I am going to bring it up again because both eyes feel dry, but the one eye feels like something is stuck in it. No amount of drops really helps.

It’s on my to-talk-about list. My appointment is either the 15th or the 19th. I have to call Monday and confirm. I definitely will not be doing the trigger point shots again. For now I’m going to go read what I can about sjogren’s syndrome so I can tell you more about it tomorrow…and hold an intelligent conversation about it with my doctor.

Oh My Aching Back

KONICA MINOLTA DIGITAL CAMERA

There’s no question why my body is rebelling at the moment. I have been going in high gear for more than a week, driving my kids from one practice to another, trying to keep up with work, social activities, sports, voice lessons, doctor’s appointments, and family obligations. I knew at some point soon my body would cry uncle and that day was today. I actually woke up okay, but as the day went on my body got more and more stiff, starting with my back and going into my hips, knees, and feet. At this point even my hands hurt. It’s the first time in quite a while I opted to take medication for the pain.

I didn’t think I’d fall asleep and I have to be up early for a meeting tomorrow, so Ambien was out of the question. I figure I have a good 20 minutes before the pain medication begins to hit. I can catch up with a blog. Besides, the pain medication doesn’t affect me nearly as bad as the Ambien. It just seems to take the edge off the pain without making me all crazy, like Ambien.

Today I started to get a little stressed about our upcoming vacation to Disney. I’m looking forward to it. Obviously I love seeing my children excited, I just don’t like tension, and traveling with family…especially my in-laws, can be tough. I’m just trying to make the trip about my kids and what they want to do. It’s going to be up to them and we’re going to play things by ear without over planning too much. Last time we have to follow everyone else’s schedule and I won’t do that again. I don’t mean to sound like I’m not excited. I am starting to get excited. I think I always get nervous before I travel.

This is the first big trip I’m taking since being diagnosed with rheumatoid arthritis and fibromyalgia. The last time we went to Disney, I had not problem walking for 9 hours a day for 8 days in a row. I don’t know how I’m going to do this time. Actually it was the week after we returned home that I felt like I got hit with a bus. At first I thought my legs were sore from all the walking,  but instead of getting better, it got worse and worse. The doctor diagnosed me with Lyme disease. That was the beginning of my journey with autoimmune disease.

After the course of treatment for Lyme didn’t help, I was sent to a rheumatologist, who didn’t think I ever really had Lyme disease. Long story short, here I am with RA and fibro, and I’m a little panicked about how I’m going to handle walking Disney in the July heat from sun up to sundown. I’ll be fine on the first day, but what if I can’t do it on the second day? Do I bring my cane? Do I think about renting a scooter? OMG, I’m thinking about possible renting a freakin Hoveround at Disney. This is a new low!

I suppose I’ll figure it all out next week and I won’t worry about it at 12:45AM when I have a meeting in the morning.

A short recap of everything else that’s happened. My daughter sang in her recital yesterday. It was such a huge moment for her. Two months ago she refused to even try to sing in it because she was so scared. She’s come so far in the past few years, but especially these last few months. I knew she was scared on the way there, but the little girl she was singing with was a little ham, and that really put my daughter at ease. The other little girl is very sweet and silly, which brought my daughter out of her shell, so to speak, and she started to have more fun with it. Heck, she even cracked a smile a few times during the performance.

She didn’t sing alone, and it wasn’t one of the solos that blows me away during her voice lessons. The songs were light and easy, but she did it, and even more than that, she said it was FUN! That was a huge moment in her life. I was a very proud mama!

My son is having a tough time with travel baseball. He’s in a hitting slump and it’s psychological. He thinks he sucks, and he’s telling that to himself. We bring him to the batting cage and the kid nails the ball. He gets up in front of the pitcher and he freezes. About 75% of the time he gets a walk because at the moment he’s the smallest kid on the team (he has my genes) and the pitchers have trouble adjusting pitches to him. The other 25% of the time he strikes out. Tonight I had a long conversation with him about this time vs, his spring team where he was hitting the ball really well. I think he really just doesn’t believe he can do it on this team. I have my work cut out for me, but I will get him confidence up.

And baby #3 is still vying for starting makeup tutorials on youtube. I have no idea where she comes from, but that kid just keeps me laughing all the time. From making me buy a kabuki brush so I can properly apply loose powder, to making sure I only apply blush to the apples of my cheeks, she is one smart cookie. I feel like so much time is devoted to her brother and sister’s activities that I need to make sure she gets back into her own things in the fall. Having three kids is not cheap!

Anyway, I should try and get some sleep now that my pain is slowly subsiding with the medicine. I don’t like taking this stuff, but I’m so thankful I have it for nights like tonight.

 

 

Shots into My Neck and Shoulders and a Mommy Brag

6076334458_84b70e8b13_m

My day started out with my appointment with the rheumatologist. Let me start by saying I like my rheumatologist. He tolerates my online medical degree pretty well. He answers my lists of questions without frustration and has no problem going over all my tests with me each time. So the recap is…based on symptoms I have sero-negative rheumatoid arthritis. He’s basing this on the swelling and pain in my hands and feet. If this become worse at some point, we’ll consider plaquenil again, but for now we’re not doing much.

My main issue at the moment, according to the doctor, is fibromyalgia. This is causing widespread pain, stiffness, symetrical tender points, and rock-hard trigger points in my neck (right under my skull) and on the top of my shoulders (the trapezius muscle). He talked to me again about Lyrica. My biggest concern is the weight gain, with my secondary concer being all the other meds that I’m already on.

He said we could likely ditch the nightly xanax if I took the Lyrica and he would recommend a very low dose to acoid the weight gain, yet combat the widespread body pain. My thoughts on this were to give it a little more time. In general I feel better during the summer. I have less swelling and pain in the warm weather. The swimming also helps with the stiffness and range of motion. My thought was, I’m not going to opposed to trying it if it might really help, but I’m going to wait until I need it, which is likely next fall or winter when the weather starts to get cold again.

I have to believe that spring and summer are coming. I HAVE TO BELIEVE! SO instead of changing up my medications, we did trigger point injections into my traps and into the bands below my skull and one in my hip, just for fun…ok not really for fun, but because my right hip has been giving me a lot of pain. These aren’t cortisone or steroid injections, but rather injections of lidocaine and some other “caine” that I can’t remember that help relax the area. For me, the tightness in my neck and shoulders triggers my migraines and in the past the shots have helped decrease the headaches and tension through that area.

So, that’s where I am in the course of my treatment. No medication changes, though I did lobby for a new muscle relaxer. We went with the shots and are going to meet again in July unless I need to see him sooner. Right now I’m laying here with ice packs covering all the injection areas, and I’m feeling darn darn good. I might be feeling darn good because I’ve had a muscle relaxer, a xanax, and my Topamax, but does it really matter why I feel good? Let’s just be happy I feel good for the moment!

And now a mommy brag that I can’t share on Facebook and I need to share with someone! So my oldest daughter (age 9) has issues with being shy. She has worked really hard and little by little she has gotten on stage to do The Nutcracker and most recently a tiny part in The Sound of Music. Well, she came to me and said she’d really like to pursue singing instead of piano so I contacted a voice coach to discuss the possibility. I don’t know what the hell I’m doing, so I had a lot of questions.

The lady was highly recommended by the mother of the girl who played Maria in The Sound of Music, and she was kind enough to answer all my questions. She was honest with me and said that she rarely works with kids my daughter’s age because their voices are developed enough. She said the last thing she’d do is teach a child how to belt something out so if that was what I was looking for that is not her. She trains the voice appropriately and that doesn’t include yelling.

Anyway, after our chat, she agreed to audition my daughter for a possible student and we went today. She taught my daughter all these vocal exercises and helped her prepare for an audition that she’s going to do this weekend for a small part in The Wizard of Oz (it’s like I don’t even know who this kid is). I sat there and listened to my daughter and it was everything I could do not to cry.

Was she the greatest singer ever? Of course not! But she was beautiful and she had the BEST time. I have no idea whether she’ll be old enough to be a student with this teach or whether she’ll need to wait another year or two, but it was awesome to watch my shy little kid stand up and hold a note with confidence. I saw a glimpse of the girl to come, and I couldn’t be more proud of how hard she’s working.

I have no idea how many kids will be at the audition on Saturday, but frankly, just for my daughter to walk in the door is huge. It’s all about the baby steps!

 

I’m Just Not Wonder Woman Today

2671961998_edb222def2_o

It was one of those days. One of those days where I was annoyed for no reason. I was tired and woke up to a house of six children that had slept over last night, and not all of them were getting along. I was ready for them all to go home. None of them left until around 11:30, after a few rounds of sliding down the stairs in a sleeping bag and annoying the crap out of each other and me.

When they left, I laid on my bed and fell asleep for two hours. My girls were playing really nice with their Littlest Pet Shop toys and my son had tryouts for a travel baseball team. I don’t want to sound like the worst mom ever, but there is a very slim chance he will make it. He has a strong desire to be a great athlete, but he’s not quite there yet, though he consistently improves every season. There were about 35 kids trying out for 12 slots, so the way I figure, he won’t be overly disappointed if he doesn’t make it because many of his friends won’t either. In fact, many of his good friends tried to make it last year and didn’t. I’m proud of him that he wanted to try, but I don’t have my hopes up. He can still play regular baseball with the town so I’m not worried about it.

My nap was nice. I was feeling depressed today and I’m not really sure why. I am not feeling terrible, and things are going terrible, it’s just one of those days that I wanted to cry all day but I truly couldn’t tell you why. I don’t have a valid reason, and I never ended up crying.

The girls and I made a Target run for groceries and that was about it for leaving the house. I think today might just be a culmination of the craziness that’s been going on lately. I’m darn tired to thinking too much.

I have an appointment with my rheumatologist on Monday morning and I don’t even have any idea what I’m going to say. I think I want to ask about MCTD after reading a lot of your posts on the Autoimmune Mama Facebook Group. It sounds like what I’m going through. I’m just not ready to try anything new in terms of meds, with the exception of maybe a stronger muscle relaxer. The Flexeril really doesn’t seem to be helping me as much. I realized that when I went for the massage and the man practically had to use his whole body weight to get my trapezius muscles to release, and even then he thought they were still tight. So I guess, that’s the plan (glad I just worked that out).

I don’t want to start the Lyrica at this point. I know a lot of people have had good luck with it, but we’re getting to warmer weather (I hope) and I tend to feel better when it’s warm. I just don’t want to add anything new into the mix since I just re-started the Topamax. That, and I keep hearing about loads of weight gain with Lyrica. I’m fighting that uphill battle enough already!

My off-topic news of tonight…I can’t find the remote and I’m too lazy to get up so I just watched Wonder Woman. That was one of my favorite shows growing up. What a hideous show! I mean first of all, what kind of idiot works with Diana Prince 24/7 and can’t tell that she’s Wonder Woman? The invisible jet. The lasso of truth. All classic! And, Lynda Carter…holy crap is that woman gorgeous. Just plain and simple, beautiful! I finally was forced to get out of bed to change the channel when Star Trek came on and Spock’s brain was stolen by some woman. We all have our limits.

Wishing you a pain-free evening!

Lots of Drama on Valentine’s Day

Photo by Hathuyanna

Photo by Hathuyanna

Valentine’s Day has never been much of a big deal to me. I scheduled doctor’s appointments and hair cuts for the kids. We got pizza and watched a movie together. We watched Wall-E, which might possibly be the most boring movie I’ve ever seen.

We ended up with about 13 inches of snow and there is a huge shortage of salt in the area, so everyone is freaking out. It’s getting all sorts of media coverage. I didn’t even attempt to shovel the snow after a night of crazy loud sleeting. I knew it would be too heavy for me.

The night turned dramatic a few minutes ago with my youngest daughter. We laughed at something she said, which resulted in tears and theatrics with statements like, “My heart is broken and I just don’t know if there is anything you can do to fix it” and “No one in this family loves me.” She has a flair for drama — my own little Sophia Lauren.

The good news about today was that some of the intense pain in my hands was gone. I still have the numbness and my lower back aches, but it’s a huge step up from the pain I was in earlier in the week. My swelling has gone down quite a bit. Tonight I’m doing a lot of research on sleep, more specifically non-restorative sleep. I can’t be alone in feeling like I can sleep all night and still wake up exhausted and unrefreshed.

While sleep has been in issue for me as long as I can remember, it wasn’t until lately that I have a whole new level of exhaustion. There are many days where I can’t make it through without a nap — again, it’s a blessing that I work from home, as that might be difficult in an office. I’m not only trying learn about the stages of sleep (which will make for another blog post), but different ways to get more quality sleep.

I don’t know if you’ve tried sleep medications, either over-the-counter or prescription, but with most of them, I wake up in more of a fog than usual. I think I’ve touched on my issues with Ambien in previous blog post. I have not remembered shopping sprees on Ebay (very happy that even on meds I’m a bargain shopper) and I’ve made several phone calls and written emails that I don’t have a single memory of in the morning.

Needless to say, I need help in the area of sleep. With my rheumatologist mentioning the possibility of starting Lyrica, he did also mention that it would help me relax at night. Perhaps an added bonus. Have any of you on Lyrica seen a benefit in your quality of sleep? I’d be really interested to hear how it has affected others.

We did have a Twitter comment asking about Orencia. For any other readers on Orencia for their rheumatoid arthritis, how long did it take to begin feeling a difference? Feel free to comment here or on our Autoimmune Mama Facebook page.

Of Course the Pain Is Gone

5018791055_a1145eb0ec_n(1)

I believe I called it in yesterday’s blog that I’d wake up and feel much better today since I scheduled a doctor’s appointment for this morning. My hands were hardly swollen and other than feeling like a migraine is coming on, I’m doing pretty well.

My rheumatologist really wanted to believe I just had fibromyalgia since I really do fit that mold. I think he was hoping that because my swelling was minor, that it wasn’t early rheumatoid arthritis or lupus. He wants to do a bunch of blood work to check my levels. Chances are I won’t get that done tomorrow with the wonderful storm coming in, but I’ll get there on Friday.

He said that the fact that my hands were significantly swollen and stuck for two to three days before the appointment, that really is more of a rheumatic symptom. Fibro is pain all over with tenderness at the trigger point areas. I definitely have fibro. There is no question in his mind or mine, but now he is thinking that the early RA diagnosis is also correct. We’re going to see how my blood work comes back and how my pain level is over the next week.

If my blood work comes back the same as it has been, with an elevated ANA being the only thing that’s off, we are going to consider Lyrica. I need help people!! Please give me some feedback if you are on Lyrica. You can either comment on this blog post or start a conversation on the Autoimmune Mama Facebook page. I’m hoping that more of my readers will start to post their own questions or vents on the page. That’s what it is there for. I so appreciate the positive feedback. It’s just so nice to connect with people that understand what my life is like with an autoimmune disease. You all have helped me more than you know.

If my blood work comes back with an elevated RA level, I will go back on Plaquenil. I guess my main concern is that I’m currently on a ow dose of Celexa for anxiety. I tried to go off of it completely a few months ago, and I was downright evil. I think I scared my kids one day when I snapped at them. Lyrica is also for anxiety, so in my head, the plan would be to start Lyrica and go off Celexa.

My rheumatologist said it is fine to be on both as they do very different things, even though they both work for anxiety. I just don’t want to be on so much medicine. I’m trying this gluten-free diet and pretty soon I’m cutting down on sugar. I think I was supposed to start that today, but it’s my daughter’s birthday and dammit, I had ice cream and it was delicious!

I know as my condition gets worse, I will likely need more meds or different kinds of meds, but my goal is to get the pain under control with the least amount of medicine possible. The doctor did give me more pain medicine for days like I had earlier this week. I don’t mind that because I take those only when I really need them — sparingly. It’s really just the every day factor that bothers me.

So for now I’m doing nothing different until my lab work comes back. I’m going to take another muscle relaxer to help with my migraine and try and relax after a long day.

I was one of the room moms for my daughter’s class Valentine’s party, and we went out to dinner for her birthday. All three kids are still up because they are off from school until next Tuesday for February break (yay me!). All the area towns that were supposed to have school tomorrow have already announced that they will be closed because of the impending storm. Looks like we’ll be going stir crazy tomorrow since we won’t be leaving the house.

I have to laugh at all the crazy people buying enough food to be snowed in for a week. Come hell or high water, I’ll be leaving the house at some point on Friday. I hope those of you getting the storm (practically the whole east coast) stay safe and warm, and of course, pain free.

Swelling, Brain Fog, and Pain…Oh My!

4925389358_f074d481d8_n

I’m not doing much better today. I finally fell asleep last night around 4AM, and then took the morning off and slept until noon after I got the kids on their buses. My hands are more swollen then they have ever been, and I can’t even tell you what body part hurts the most. I hurt everywhere!

Days like this are so hard, and I know my fellow autoimmune sufferers can understand. I don’t want to sleep all day. I have a lot of things that needed to get done. The people who say “just push through it” don’t have a clue. I am the person that just pushes through. Most moms take care of themselves last. We aren’t allowed to get sick. We hold our little ones as they cough all over us, and when we finally get sick the caring for the children doesn’t stop. We push through.

I guess that “push through it” annoys me because it implies that I’m not trying to push through the day. What many people don’t know is I’m pushing to get through of most days, but they don’t get that. When I have a day like today, there is no pushing through. I can’t move without intense pain.

I’m walking hunched over, and when I get up I feel like my knees are going to give out. I even had trouble holding my cup of tea today…so NO, I’m not pushing through anything. I’m letting my body guide my day and doing what I need to do to get through. I refuse to let anyone tell me that’s some kind of failure…giving in and staying in bed most of the day. As far as I know, I’m the only person in this body and no one else can judge the level of pain I’m in.

After I put the kids to bed, I took some narcotic pain medicine. The thing I hate the most about it is that they all seem to make me itchy. I constantly scratch myself when I take percocet, vicodin, or dilaudid. It’s some weird reaction, but I would rather be itchy than in pain. To be honest, the medicine just took the edge off the pain. It’s not like I’m feeling good at the moment; I’m just in a bit less pain.

Brain Fog

I don’t think I’ve touched on the topic of brain fog much on my blog yet. I think it’s something I don’t like to admit to having. I’m ready to tell you, that today was also hellish in terms of brain fog. I know my routine, yet for the past few days I’m forgetting things. Last Thursday I forgot to bring my daughter to dance simply because I didn’t remember it was Thursday.

That’s just not like me. I know these storms we’ve been having contribute to the amount of pain and other symptoms I’m having, but I’m just not sure what to do about the brain fog. It doesn’t seem to get better with sleep. I’m at a loss for what to do. Any helpful hints are most welcome.

Going Back to the Rheumatologist

I’ve also given myself a deadline of the weekend to start feeling better. I really wanted things to work going off my RA meds, but I’m seriously considering going back on the Plaquenil. I have researched other things I will ask the good doctor about, but I just can’t keep going on in this kind of pain. I want my life back!

Tomorrow is another day, and I’ll work on being less crabby and less of a downer. We all have days like this, I’m sure.

Diagnosing Fibromyalgia

Photo credit:  ericalaurend

Photo credit: ericalaurend

It’s not in your head! Fibromyalgia is a chronic pain disorder that causes widespread pain and muscle tenderness throughout the body. It also causes extreme fatigue, digestive problems, migraines, and sleep issues.

One of the big problems with fibro is that it’s often difficult to diagnose. Any person can walk into a doctor’s office and say they are suffering from exhaustion, but many of us often ignore the aches and pains until they become unbearable. As I mentioned in an earlier post, I have had migraines, muscle tenderness and joint pain for years prior to my fibro diagnosis.

One of the primary ways to diagnose fibromyalgia is by reviewing a your symptoms with your doctor. It may also be necessary to see a rheumatologist, who deals with autoimmune issues more regularly and thoroughly than an ordinary general practitioner. With fibromyalgia, pain sometimes affects several areas of the body, such as the shoulders, back, hips and legs, and is generally located both above and below the waist. It may become more intense in cold weather or during stressful periods.

For many people with fibromyalgia, extreme fatigue and/or insomnia is one of the main symptoms and often the reason people seek medical attention. Fibromyalgia patients often wake up still exhausted and fatigued even after 8 or more hours of sleep. Fatigue can also be so severe that it interferes with everyday activities, including maintaining a job, family responsibilities, and normal everyday activities.

Not all people with fibromyagia suffer from the same symptoms, which also adds to the difficulty in diagnosis. Other symptoms may include migraine headaches, restless leg syndrome, or sensitivity to bright light. Some patients may have (or may develop) anxiety and depression. Cognitive problems may also develop, including memory lapse and concentration difficulties, often referred to in the autoimmune community as “brain fog.”

There is no specific medical test to diagnose fibromyalgia. This definitely makes the diagnosis more challenging in that many of the symptoms of fibro are also symptoms of countless other issues.. According to the National Fibromyalgia Association, it takes about five years for a patient to be accurately diagnosed. For me, it took 2 years and three different doctors. Of course the jury isn’t in yet if I also suffer from early rheumatoid arthritis or lupus. Both keep getting thrown around because of the swelling in my hands and how quickly I went from being basically fine to feeling like I got hit by a truck.

It’s important to see a doctor if you’ve had one or more of these symptoms for a period of 2-3 months. Of course, if the your level of pain is more severe, don’t wait.

Traditionally, a rheumatologist will do a “tender point” exam. Established by the American College of Rheumatology in 1990, the tender point test designates 18 spots throughout the body as possible painful areas, located near various joints including the hips, elbows, and shoulders. During the exam, the physician applies pressure with a finger to the points.

A fibro diagnosis used to be made if 11 of the 18 trigger points experience tenderness. Although the tender point exam may still be helpful in making a diagnosis, its results aren’t considered a primary indication of fibromyalgia. One reason is with fibro (and other autoimmune diseases) symptoms may come and go, and trigger points may hurt one day and not another.

Doctors now consider widespread pain for more than three months to diagnose the condition. The problem is, fibromyalgia symptoms are very similar to those of other conditions, like RA and lupus. It’s not uncommon for patients to undergo several other medical and blood tests to rule out other conditions. It is also not uncommon for these symptoms to be present in anxiety and depression–another instance of what came first the pain or the depression?

For those of us dealing with fibro and other autoimmune issues, it’s not uncommon to have some sort of depression. Your life is in turmoil, not knowing how you will feel from one day to the next. It’s hard not to feel depressed if you’re cooped up in the house unable to move without pain. You may miss important events, etc. This isn’t easy on autoimmune sufferers. It’s one thing I struggle with. It’s difficult to make firm plans when you don’t know how you’re going to feel from one day to the next.

The bottom line is, if you are experiencing these symptoms, most importantly widespread pain (the spots can change from day to day), see your doctor and don’t stop asking questions until you get some answers. I have heard the talk that fibro is diagnoses when they can’t find anything truly wrong, but for those of us suffering with it, it’s very real.