The moody blues.......
I am wondering if anyone else can go from laughing to crying in seconds. I am a roller coaster of emotions and I can’t figure it out. Is it all the medications? Is it the million things going on in my life? The RA? The heat? Stress? Or am I just turning into a jerk? I am becoming more and more frustrated with my moods, which means those close to me are even more frustrated. Can anyone shed some lite on this subject? I sure hope so, otherwise I may have to move to Amsterdam and start smoking pot to calm my butt down ;);)
I need an RA manual......
It is hard to not worry about every little thing that pops up when it comes to my body. I catch myself staring at my hands, almost in a trance, looking for changes. Is there swelling? Discoloration? What is that bump? Was that always there? After I work a double shift and come home limping, I blame it on the RA, not the fact that I was running around making drinks for crazy booze hounds for ten straight hours. When of course, it is both. Things that I used to dismiss have become major events to me. Why do I have a headache? A fever? Why is my knee hurting? Is this a bug bite or a growth? Why are things taking so long to heal? Or are things healing how they should be? What effect is not having a spleen really doing to me? I need a manual!!! I need somewhere to go when I am concerned. I have not learned what to dismiss and what I should note as important.
It is a whole new world when you become sick. You look at things differently, some things are better, some worse. You hope that people understand how it feels to be sick. Sometimes they do, but more often than not, they don’t. How can the healthy know what it is to be sick? Co-workers think I am a germa-phobe for washing my hands constantly, when truly I am petrified of catching something because my body does not possess the strength to fight off infections. My boyfriend doesn’t understand that when he wakes up, the first thing he thinks of is what he has to do that day. When I wake, the first thing in my head is, how much pain will I be in when I get out of bed? Followed by my morning meds, breakfast, errands, work, afternoon meds, homework, chores, exercise, and evening meds. If I have the energy to do all of that, it is a GREAT day! But usually I don’t and it will leave me feeling guilty for not doing enough. Again, a place a manual would come in handy. If I had the time and the energy I would right a funny manual to living with RA, maybe after I finish nursing schoolJ
My goal for the month is to recognize when I am taking on too much and give myself a break! I am not wonder women!
Funny note: I am an idiot, and did not let my Enbrel shot get warm enough. I injected myself and it was so cold it felt like someone had stabbed me in the leg with an icecicle!! Half way through the injection I pulled it out and the Ebrel went spraing all over while I was screaming profantities. So, I went and bought myself an egg timer so this doesnt happen again.
Do you have any Enbrel stories? Tips? Reactions? Comments? I am on week two and anxious to hear what you think:)
How the heck does anyone manage stress, especially when you have RA!!! There is so much going on all the time. Work, school, medical bills, regular bills, computer crashing, medication schedules, side effects, flare ups, and about a million other little things that make you want to take a baseball bat to your printer. Some days just feel like a bad hair day. You leave the house just not feeling right, and this continues to be the theme throughout the day. And some days turn your whole world upside down, these are the onese that can trigger flare ups. I am trying to learn how to handle these days, not that I am any good at it :)
I decided I needed a vacation! And I had a few people in mind that I knew needed one too. So, yesterday I booked airfare to Boston!!! My parents, my boyfriend and I are going to drive up to Maine and eat lobster. I am going to sit on the beach and forget about all the little things that I have to do in a day and enjoy being ok. 6 months ago I was in a very bad place. I was very sick and VERY scared. Now, that I am feeling better I want to take a moment and celebrate the fact that even though there can be dark days, there
After visiting the RA Doc last week she decided to put me on Enbrel. I was alarmed at first. I did not want another drug that would make me want to eat everything in sight and punch strangers. Prednisone makes me crazy enough, I think I may change my name to Sybil. But, after talking with my Doc, doing some research, and having a mom that knows how to make you look on the sunny side of things, I am ok. Scared, but ok. I just got off the phone with an Enbrel nurse and they seem very helpful and kind. But, the problem here is, why? What am I taking that requires a lunch box size kit, 24 hour nurse access, and phone calls from the Enbrel people every few days. As much as my parents may argue, I know I am not special, so why all the attention? This must be a pretty serious drug for so many different people to be spending so much time talking to me about it. Or, am I being a baby? So, if you have some Enbrel stories, please share.
So, I am slowly putting together a kit of things I need most when dealing with a flare up. So far I have, a heating pad, biofreeze, heat packs, and essential oil. What do you use for a flare up? What would you put in your kit?
I am getting ready for my Arthritis Walk tomorrow then the RA Doc on Monday, I am very excited! I will be sure to have some new information come next week. Have a great weekend everyone!!!
I am very excited to see my RA Doc on Monday. I have several questions and am anxious to find out what type of immunizations she recommends that we RA girls have. As a nursing student about to go into the hospital setting I realize I must be protected better than most. So, I am going to ask as much as I can and I promise to share everything I learn with you.
I have cut back to one Prednisone a day and it has made a big difference. I have lost the urge to punch everyone in the face and I am looking less like a puffer fish.
I realize I have been slacking a bit on my page, I am now working two jobs and taking summer classes. This equals me needing a few more hours in the day or a personal assistant...............or both. I have two days off next week instead of one since I am going to the Arthritis Foundation walk. I am going to use my extra time to add some more to my page. I have alot of great information coming!
For today, check out my post under "LIFE WITH RA" about infrared saunas.
I learned my lesson.........
Dear body, I am sorry I made you work 13 straight hours on your feet yesterday. I am sorry I did not feed you properly, only to then come home and fill you with Methotrexate right before bed. I understand why you didn't let me sleep well and are giving me this sore throat and throbbing pain everywhere. I realize I am not 20 anymore and that I am not working with a "normal" body. I promise I will no longer subject you to such abuse for the sake of extra money. If you can just get me through today I will give you lots of fruits, veggies, rest and a nice massage. What do you say, do we have a deal???
I have been having more breathing trouble. I am not sure what it is from but I am anxious to see my Doc soon to figure it out. It comes and goes in waves.I It seems the worst when I am around smokers or the pollen levels are high. Some days I dont have it at all, others it can last for hours. Has anyone had breathing trouble???
My summer semester started this week and I start a second job tomorrow. I know I am probably pushing myself a bit harder than I should, but I know if I work really hard all summer, I can cut back on working so many hours when my clinicals start in the fall. This will allow me to focus on nursing school and staying healthy. I am just crossing my fingers my flare ups stay away. Only had a few hard days this month. I can handle that.
Two more weeks till my walk for the Arthritis Foundation!!!! I have raised $525!!! More than double my goal!!! I am very excited and must be sure and start walking everyday until the walk to be sure my ankles are up to it. No matter what, I am going to finish that walk!!! I will bring a wagon and have my boyfriend pull me if it comes down to it :):)
Has anyone heard of LDN?? Used it??? Please let me know if you know anything about it.
I finally feel a better today. I am 100% sure the weather is directly effecting how I feel. I actually felt like I was a being microwaved the last few days. Now I know what those bags of steam fresh veggies feel like :) The pressure and pain had me in tears. This made me realize two very important things. 1. I need to move and 2. I dont know what real pain is yet.
This week I had one of my most painful days. My right arm was swollen and the shooting pains radiated all over,. I am grateful that it is down to a dull ache now, I know I am lucky for that. I also know that I have not seen the the worst of this disease. Instead of fearing it, I am preparing for it. I am going to do things that I love and live the best way I can.
I went kayaking for the first time last week and I LOVE IT!!! I have already begun trying to find one to buy. This is something I have always wanted to do, but never did. I always found an excuse, I am too fat, what if I fall out, what if I look stupid. I have never done a physical activity that brought me so much peace and joy. I wish I would have done it sooner! It took having RA to give me the confidence to try new things.I am by no means glad I have this disease, but it has changed my life in a positive way. I now realize that I should try anthing while I have the chance, beacuse there may be a day I am unable to do certain things.
I have much more coming soon! This week I am going to try and put a day aside to just work on my page, Have a great weekend everyone!
I am working as a bartender while in school and I love it! I get to meet new people, it is not as hard on my feet because I am in a small area, and well, bartenders are cool:):) What is not cool are my fingers locking up last night! I was carrying a medium sized plate and shooting pains started radiating through my hand and arm. I couldn't set it down because I had a beer in my other had. So, I just bit my lip and walked to my customers. I set it in front of them and rushed back to the kitchen to shout F#@! a few times. I had to rub out two of my fingers and after that I was fine. I was caught off guard because nothing like this has happened before. I will be paying much more attention now when I am carrying plates!
On another note, I am going to start cutting back on prednisone. I am on a roller coaster of emotions and I feel like I am losing it. I go from crying over bank commercials, to screaming at my boyfriend for breathing, to having an incredible urge to punch everyone directly in the face. I cannot keep doing this. I think I am starting to feel the effects of the medications now. In addition to the moodiness I am exhausted. I will get bursts of energy for an hour then want to sleep for two, my chest feels heavy and sometimes I get waves of panic over my body. It is hard to tell what symptom is from the RA and what is from the meds. I see my Doc on June 6th and I am going to demand she give me a pill that will make me feel better, with the side effects of weight loss, increased energy, full luscious eyelashes, and more dates with good looking men.
Have a great day everyone and thanks for the comments!!!! I am learning so much from everyone!!!