Neurologist

I went to see the neurologist today. It was my first appointment. I was referred to evaluate my hand tremors, which of course are better. But, I've waited two months for the appointment, so I figured it was worth going anyway. We talked about the hand tremors and how/when they occur. They only seem to happen when I lift my hand, not at rest. I mentioned how I had been having really bad headaches. Bad enough, that my doc had ordered an MRI. The MRI was fine, but I keep getting this sharp stabbing pain in the left side of my head. The neurologist is ordering a anticonvulsant medication. Basically, to slow the activity in my brain. I took the first dose today. The side effects don't look awful. I always worry about stomach upset or fatigue. Those things really get to me. It does say I could possible get fatigue and/or dizziness. I'm going to keep a close eye on it. The interesting thing is, that the doc today was figuring that these symptoms began when I started Enbrel. Right now, it's not enough for me to say I want to stop Enbrel. It's doing more good than it could potentially be doing bad.

RA update

It was absolutely amazing to take time off work. I went with the family to Hawaii. I'm in love with their weather AND beach! It was so nice to take time off work and just relax. Even though I was able to relax mentally, I wasn't physically...but that's ok! We walked a lot and saw a lot. I loved being somewhere that had stable temperatures. Their high and low only vary by around 10 degrees!



I realized something while I was on vacation. NO headaches. It has to be caused from stressed. I was completely relaxed AND even slept in. I suppose this is good news, but I'm still going to keep my neuro appointment.



Last week I started physical therapy for my knees. I do NOT want knee replacements in my 30's if I can help it. It turns out, my hips are really weak. I could kick myself for pushing for physical therapy after my hip surgery. The doctor didn't recommend it, so I didn't push for it. They are recommending to completely stay away from the treadmill and running/jogging all together. It gets me so discouraged. I was just starting to get the energy for jogging and started working on my endurance. I drop weight so fast when I run. I know its for the best, my knees kill me after the treadmill. Maybe the bike and I will learn how to be friends.


I think I'm pretty good at controlling my pain. I get "achy", but rarely is it unbareable. I get a massage every week to 2 weeks. I try to get to acupuncture at least once every few weeks. I'm thinking about throwing chiropratic care in there. Not sure if I'll get anything out of it, but I suppose it's worth a try.

BIG headache, little answers

I have had headaches and migraines for as long as I can remember. Normally, from stress or lack of caffeine. Last week, after my fun trip to the rheumy for cortisone injections, I thought it was time to ask about my increased head pain. For the past couple weeks, I've been getting sharp stabbing pains in the left side of my head and eye. Nothing brings them on, and nothing helps them. It doesn't last more than a few seconds, but once it starts, I seem to have episodes every few minutes. It was bothersome in the begining, now, I'm scared. I am STILL waiting for insurance to approve an MRI. My thought is, they'll probably approve it next week, and by the time it'll get scheduled, I'll be out of town on vacation. I didn't go to the gym at all last week. Partly because of my knee injections, but also because of my head. My doctor told me it could be from a couple different things. One being a seizure disorder, but I don't think that's likely. The other thing is something called Tic Douloureux. Basically it's nerve pain that's not harmful, but it HURTS. I'll feel better after the MRI and know that it's not something else.

It's not a day full of rainbows and unicorns

For the past week or so, I've noticed my fatigue to slowly start creeping back. 2 days ago, my knees starting to hurt when I walk. No swelling though. The swelling is all in my feet. I have cankles, and they hurt. I'm feeling so discouraged tonight. I tasted what it feels like to be normal. I don't want that to go away. I had cortisone injections in both knees today. They are absolutely killing me right now. I thought I was bummed when the doc said no gym for 2 days....reality is hitting in that my Enbrel injections aren't helping like they did in the beginning. It's only been a couple months.

Holy sciatica

Today was injection #7. I feel more tired and achy than last week. That may be because I've been working too many hours AND I haven't had time to pick up my meds at the pharmacy. Ive had a headache for 4 days now. My back is burning and aching soo bad right now. I still somehow made it to the gym though! I'm back in my cycle. I feel good, so I work too much and wear myself down, which usually causes a flare. Doc sent paperwork to my work for me to work less hours. It's so hard when there's so much to do! For now, I suffer with this awful back pain and vow to pick up my meds on Monday.

New and Improved

On Friday, I saw my rheumatologist. Let me just say, I love this woman. I think the key to a good patient-doctor relationship is communication. She doesn't just tell me what to take, but I get to give my input! Looking back 2 months ago, I was a hot mess. I have no idea how I functioned feeling so crappy and having such little energy. I will NEVER forget that feeling. Last week was enbrel injection #5, I still had a skin reaction, but feeling good! I asked doc if it was ok to drink. In the past alcohol has always been a trigger for me. I would wake up the next day with stiff and swollen joints. Doc informed me that was because I was drinking beer, the yeast is a trigger. I never knew! She gave me the go-ahead to have gin or vodka. Good lord, this doc knows how to paaarty. I had the best weekend in such a long time. I met some girlfriends for karaoke. It was so much fun watching bad singers and singing along. A couple of my guy friends came out later and we stayed until the bar closed. Nobody was really ready to go home, so we went bike riding! Omg, such a free feeling. I've had a brand new bike just sitting and waiting to be used. The weather was perfect! We rode bikes until 4am. My legs were sore the next day, but the good-muscle sore. On Saturday, I met some friends at a club to celebrate a birthday. We danced until our feet hurt. I was a little self conscious because I wore a dress and my injection site was already reacting. But, one of my friends said it just looked like a bug bite. I had vodka on Friday and Saturday, and I have to say that I think the injection has an effect. I didn't feel anything! It was like I hadn't had any alcohol. I'm usually the light weight, and it's been months since I've had a drink. I wanted to see if there was any info to read about that.

I'm so thankful to feel well enough to do these things. I really needed to get out and socialize.


The downers from Fridays doctors visit: she doesn't want me to get a tattoo. Doc says it can trigger an inflammatory attack. I researched over the weeked and chatted with other RA'rs that have gotten tattoos. I think I'm going to get it still. Also, doc wants me to see a neurologist. I occasionally get shaky hands. Like if I'm holding or grabbing something.

We're starting a "Biggest Loser" at work, kind of like the tv show. It's perfect timing too. Doc also gave the ok to go back to the gym. I feel like I've lost so much muscle. I already have a work out buddy. I just need to figure out my schedule. It's so easy to say "no" to the gym when you're too tired. My biggest problem is my diet. I have had flare ups off and on for the past 2 years. Before that, I felt good for quite a few years. So when I have a flare up, I comfort eat. Usually something really bad, like fast food. I'm also a Starbucks junkie, such a hard habit to quit!

Peer pressure vs guilt

I've completed 4 weeks of enbrel injections. Overall, I feel so much better. My energy is better, I can concentrate at work again, my pain is well controlled. I will never forget what true fatigue feels like. I want more than anything to keep things as they are, I even have a goal of returning to the gym. It scares me to think about going back to how I felt just 2 months ago. I felt like I hit rock bottom with my disease. I plan to do everything in my power to maintain my health from now on. As much as I miss socializing and happy hour after work, I have decided to stay away from alcohol. Alcohol has always been a big RA trigger for me. I have told people my choice. Now, when they keep asking me to join them at the bar, how do I nicely remind them that I'm not drinking? And, when they keep asking, am I just sounding like a party pooper or someone from AA when I keep saying "I'm not drinking". It's not that I don't want to go out with friends, I miss socializing! But, have you ever been the sober one at a party? You definately realize what an idiot some people are. For now, I will choose to be the party pooper. A wise friend once told me, you can teach someone something but you can't learn it for them.

Enbrel=energy and ugly skin

Friday was injection #4 of Enbrel. Last week, and again this last injection, I've had skin reactions. Which, doc and fellow RA'ers are saying are "normal". I still feel good, energy is back and the only pain I've had lately was mild when it rained a couple days.

I'm dealing with the ring worm look alike reaction. Luckily, I inject my thigh, which rarely sees the light of day.

My plan is to have one full month of feeling good before I try any physical activity. I'm so scared of going back to where I was pain wise. When I think back to where I was 2 years ago, I get discouraged. I was nearly 40 pounds lighter, and in shape. I just hope I can get back there.

The fog has finally lifted

I know to expect side effects from medications. The past few weeks just was more than I had expected. I feel like I've been in a complete fog. Lyrica is now on my "I refuse to take list". The headaches and nausea were awful. It's so hard to try to go about your day when you feel like crap. I think the absolute worst is when you cannot think or comprehend when someone is talking to you. I imagine this is what feeling like a nutcase is like. I felt like a complete lunatic not being able to process my thoughts or forgetting the simpliest things. It made my fatigue twice as bad. 12 hours of sleep felt like a nap, it was just awful. In the midst of going through my "crazy fit", I started Enbrel. I've never injected myself before this. I thought it would be much more difficult. The injection itself is the easy part. The medication going in, well, saying that it burns a little would be an understatement. But, the benefits are way worth it.  Friday was my second injection, and also day 4 of being off of Lyrica. I think yesterday was my first real day of feeling "good". No pain, no Lyrica yuckiness. I think I'm finally going down a better road.

One uppers

I'm flaring, can I just have my moment?! I can't complain about aches and pains without someone telling me about theirs. I can't say that I'm tired, because the person next to me is just as tired. I sometimes wonder if these people have any idea what I'm going through.

Where's the unlike button for RA?

It's a known fact that a full tank of gas eventually goes empty. I've been going full speed for a couple months, then the past 2 weeks I've been fighting a flare. This flare has been different. It started with slight fatigue and body aches. I am completely exhausted by the end of each day lately. My costochondritis is kicking into high gear as well. It causes my chest to hurt, luckily working in heart transplant, I can get an ekg at any time for reassurance. After work today, I met some of the girls for a drink and chicken strips! Yummy. Except, I already feel crummy. I have shortness of breath pretty bad, I'm guessing from inflammation in my chest wall. Then, I lost it and started crying...that really didn't help my breathing. Doc emailed me earlier and told me to add methotrexate back into the mix. It's not an awful thing. It just makes me feel sick before it makes me feel better. I just want to feel better. I can fight the pain better than the fatigue. I can't put a brave face over fatigue like I do with pain.

No more rain

I'm having a complete pity party today. I'm beyond tired from working nearly 12 hours a day. To top it off, my RA started acting up yesterday. It rained all through the night, I didn't sleep much because I swear it felt like someone was chewing on my shoulder bone. The pain was awful. It's times like that I wish I could take pain meds. During the day, the fatigue was hard to fight. I put on my "brave face" at work and pushed through it. Finishing at about 13 hours today. I just feel like I'm going to crash and burn. I can't keep working at this pace. Especially when I'm hurting. I was hoping to take part of tomorrow off, but I have a patient I need to take care of. I would love to take a day off work and just sleep. My days off are usually spent catching up with family or doing laundry. Which, speaking of, I really need to do. I had a near melt down during the day today. We had patients nonstop all afternoon. I take advantage of any down time. There was a brief break, so I ran to the bathroom. My sore, weak hands were trying to grab toilet paper out of a dispenser that was made for a non-arthritis person fought me. I pulled, and was given a square. Pulled again, one more square. It was quite the challenge. Sadly, the grabbing part is what bothered me. It's supposed to rain again tomorrow. I just feel broken. I need energy. Bedtime now, alarm is set for 4am....so we can attempt this charade all over again.

Does wine cure the whine?

I almost celebrated a full 2 weeks of feeling AMAZING. I had a follow up appointment with my doc on Friday. She says I need to really watch the color changing hands. Apparently, the lack of blood flow can cause nerve damage. I wear two pairs of socks usually, she said it's not good enough...so I bought special diabetic socks at freakin $10 a pair. I don't feel awful, I'm just feeling discouraged. I sometimes am afraid to enjoy things, because I don't know how it might make me feel physically. I need to stop living in this kind of fear.

On Thursday, I was having some chest pain and a fluttery feeling in my chest. I've been training a new girl at work how to do EKG's, so I had her do one on me. As soon as she touched my chest to place the leads, I felt pain. Instantly, I knew what it was. Every so often, my costochondritis flares up. It's inflammation in the ribs and hurts to the touch. Normally, I use colchicine to help relive the pain and inflammation. I found out from the pharmacy that it's no longer available. But, a new and MORE expensive medication is. No thank you. Waiting to hear back from doc to see what else is out there.

 I spent the night at Mom's last night. It's always nice relaxing with family. We made dinner together and watched a movie. We got to church a little early, so we sat in the cafe and drank our coffee. I lifted my right hand to take a drink, and my hand had the shakes....like quivering. It was strange. Mom noticed it too. So, I tried to brush it off and just use my left hand. I hate people noticing things like that, or me in pain. We met some family for breakfast after church. I used my left hand to eat because I was afraid of it happening again and people noticing.

I'm going to pretend I don't know any better

I've been feeling good for a week. I know that may not seem like much, but it really is. To have my worst pain be a 3 on a pain scale is fantastic! My energy has been so much better too. And, when have have both of those going for me, my mood is just overjoyed. I feel like I'm about to ruin it. My friend at work, Sophia, is having a birthday party tonight. It's actually a surprise, she is totally clueless. I'm excited to go out and socialize, I haven't done that in a while. BUT, I know my triggers. Dancing and drinking.....I always pay for it. Drinking always makes me swell and stiff. Dancing just makes me feel like I'm 80 years old the next day. I don't want to feel like I have to live in a bubble. I'm still going, I have ants in my pants and need to get out.

Support RA!

I found these online, thought they were cool!

I'm blue.....literally

First off, let me start by saying I sometimes think I must be the worst patient. I google my symptoms, and self diagnose. I often adjust my own meds. I sometimes forget that I never went to medical school. Working in the medical field, I see and learn a lot. Therefore, I often think I know it all.

I've always had cold hands and feet. I never thought much of it, just that I could have issues with circulation. The doctors have never taken note of it, and I've always had every joint examinted for my RA. For the past couple weeks, my left hand had turned blue. No pain or numbness. So, I go to google to self diagnose. The first thing that comes up is "cyanosis". Basically meaning I'm not getting enough blood. I get it. But, WHY?!  I emailed my doctor. She just says simply, "its raynauds". Google says it's common in people with RA. My doctor decides to follow up with a bunch of crazy labs. Ten viles worth. I justified eating out after getting all the blood sucked out of me. The labs show I have something called antiphospholipid syndrome. I have to make sure I take an aspirin a day because the syndrome puts me at a higher risk for blood clots. I'm still not sure if the blue hands and lab results are related. I'll see doc next week and ask a gazillion questions. I get so discouraged at times. It's like if there's a small chance something will happen....it will happen to me.

Triggers

I think if you listen to your body, you can start to learn what triggers some flares.

When I was a kid, everyone always associated my pain with cold weather. But, in truth, the really hot days were sometimes the worst. Everyone would go swimming when it was really hot. I never could, because the really cold pool would hurt. Or, even having the air conditioner on would make me hurt.  I seem to have real trouble with extremes, mostly when it's too cold. And, of course, the barometric changes. Maybe I should have been a weather girl?

 Last week, the weather started to change and it rained a day or two. I had trouble all week. I'm most often guilty of wearing my "brave face" at work. I don't like people to know when I hurt. I wear 2-3 pairs of socks, layer a couple of shirts, AND I keep on my gloves when I'm at work. I work inside a hospital, in my defense, it is a super old building with bad insulation. I was sooo cold. The only time I warmed up was when, each day, I would come home and take a steaming hot shower.

The weather has stabilized, and I had a pretty good weekend. Even went on a bike ride with the family. I haven't rode a bike in years! I know my triggers, but I also know what can sometimes help. Besides the hot showers, I have been getting body massages every couple of weeks. It really seems to help my body relax. I've noticed that when I tense up, my joints stiffen. Today, I had my nails done. I really could care less what color they paint them. I just like the massage on my feet and hands.

I often work a lot. When I do, I end up eating crap. Or, when I'm flaring up..I use food to make me feel better. Usually something that isn't healthy. I've noticed I feel so much worse when I eat fast food. It's just so hard sometimes. If I've been at work for a good 12 hours, the last thing I want to do is cook. (Besides, cooking for one is more difficult than it sounds). It makes it that much easier to order a pizza and pick it up on my way home. AND, there's actually an iphone app for that! Yes, I order pizza on my phone app! I had been seeing a therapist for a few years for my anxiety. I had talked to her about using food for comfort. She actually encouraged it. After seeing myself gain 20 pounds, well, with the help of prednisone, I decided to stop seeing her.

Even though I've had RA almost my entire life, I'm continually learning about my body and how to read it. I can't say that I look forward to learning more. But, maybe one day I'll come close to mastering it?

My secret is safe with me

Day to day life can be painful. Physically speaking. Some people have no idea what it's like to struggle getting dressed. How many people my age have gone to take a bath, then sat there and cried because you can't figure out how to get out? I'm sometimes so resentful of my disease. But, I often wonder if God didn't give this to me, would it have been one of my family members that would be going through it. I hurt a lot of he time, but the majority of the time, people have no idea. In my mind, because I've had RA for nearly 30 years, people are tired of hearing about it. I sometimes don't talk about my pain until its at an unbearable stage. Or sometimes, when it becomes obvious in how I walk. As I've gotten older, I don't get the swelling like I did when I was a child. I do get the fatigue. I could sleep 12 hours and still feel tired. My body will feel like its sick. I sometimes wonder what the future will bring. How the disease will progress. I know I shouldn't dwell on such negative things, but it's a reality of life. I'm in "moderate" pain tonight. My hands have really been acting up, I can't grab things or make a fist when they get like this. Thank goodness for iPhone typing, the touch screen is easier to use than my computer. Don't get me wrong, I do have decent days and sometimes really good days. I just wish I had some of those right now. I sometimes wonder if my family has any idea what it's like to live with chronic pain.