Angry and I know it...

Angry and I know it.

They say that overcoming denial is the first step...

I AM ANGRY AND I KNOW IT. 

Whew. Glad that is done. Chronic Pain has made me into an angry person. An ugly person. A person, that I do not want to be. I have been trying to overcome the anger and sadness it brings for the last two years.

I can fake it. Most of the time. I do it for my family, for my kids, for others around me. I do not want it to affect them as it does me. I tried taking it on head first, I have tried a dozen different types of meds, infusions, vitamins and even a gluten free diet. None seem to be helping. I have tried staying positive, staying in control and it all keeps slipping.
     I don't recognize the person in the mirror. RA has changed my entire physical body. I can no longer run, jump, dance. The meds make me blow up. The prednisone has changed even the shape of my face. Worse than not recognizing the face that looks back at me is not recognizing who I am inside anymore either. I used to know who I was, where I was, where I wanted to go and how to get there.

I cannot figure out why that has changed so greatly. I feel like I do not know where to even begin anymore. Even trying to thing about what path I want to take has changed as I have to think if I can do it with the pain, the swelling and if I can do it for the next 20 years or more. I do not know how to bring it anymore.
     I used to be strong. I do not feel that way anymore. I hate not being myself. I hate that I cannot spend the whole day jam packed with fun activities for my kids and I used to do. I hate that I am not the cool mom anymore! :) When my 8 year old asks me to do something and I am in too much pain, too exhausted, the look of disappointment on his face makes me cry. The feeling I know he feels keeps me up at night just thinking of ways to overcome it. My 2 year old will tell me over and over sit mom sit. On the floor of course. I try to everyday for at least a little while. I remember when I could wrestle the best of them. I hate the battle inside. I hate the pain and being tired all the time. I hate being bitchy. I AM ANGRY AND I KNOW IT. You would be too if you were in pain 24 hours a day.

I lack support because I am not open enough with how I feel. I just keep pushing on. I keep things to myself and struggle to tell even my best friend what is going on. I do not know why. Because I do not look ill co-workers do not understand my need for a break or why I only work 8 hours a day. They lash out and make it not fun to be there. I fake it. Then remind myself they do not matter. I matter. My boys and family matter. I know I seem to vent a ton on this blog but it is the only place I can.

I need to find my path. I need to be happy.

Grabbing the Bull by the Horns...

It has been a while since my last post. I thought I would be able to write some more but between work, home, the boys and the disease the only time I have is at night when I am trying to sleep! In the last month I have tried to take back some control. Tried is the key word. I guess it is a good thing that I can try at least?

I went to the rheumatologist with a list of my things I needed to go over, things to tackle, and overall questions and concerns of what we are and are not taking care of. I felt good about it. I felt in control. The first being pain management. I hate pills. I have become a pill popping girl since diagnosis and it is still not helping. His only idea was to change to oxycontin. Which I refuse. I need to be able to work, care for my family and not be drugged up day in and out! We increased the mg of the vicodin. It still only helps to take the edge off so I can do some things. It all just hurts. I have been typing for less than 5 minutes and have already had to stop, shake the hands, and give them a rest.

I am losing the use of my hands due to the pain. That really sucks. This morning putting on my younger sons socks was a chore with my shaking hands and the pain. Silly that something that was soooo easy to do once has become something I dread.
Holding hands is a thing of the past. My son can hold my finger because holding hands which should be comforting is painful and uncomfortable for me. That sucks. I miss it! I am getting off track! Back to the Dr. Apt. where I tried to gain control!

2nd item to discuss was the prednisone. I have been on the steroid for a year. It helped greatly in the beginning. Now, not so much. So...why use it when it gives me "steroid face" moodiness, and weight gain. He decided to switch it to medrol. At first I was excited about it. Then realized it too is a steroid and will have the same effects! But, I felt good about making some changes hoping something could turn this around.

The result...apparently the prednisone was working some. The pain has gotten worse. The exhaustion has gotten worse. Little tasks wipe me out for hours. I will stick it out until the next appointment at the end of the month. Then will be switching back. Guess the good thing is I learned that it was helping some!

3rd item to go over was my depression. Yes, after a year of struggling and saying I could do this without an antidepressant saying I do not need any, I finally admitted to myself and the doctor that I did need some. He said "I think that is a good choice and I believe you do need some after all you are going through". He gave me samples of Cymbalta.

OMG OMG OMG!!! I took it for 4 horrible horrible days. I felt sooooooo bad. It gave me flu symptoms, hot and cold skin crawly feelings, dizziness, nausea, and severe diarrhea. I tried to stick it out but could not! It was too horrible! I do not know if all antidepressants are this way??  I think I will just continue to cry and try to get over the depression without meds because I do not know if I could try again. They kicked my ass.

4th Item  was just overall talk about rheumatoid arthritis disease and how it effecting my daily life, what is swollen what is not etc.... Most of my joints are swelling, we knew that. Some days different ones swell. The shoulder is always in pain. There is a small joint by my collar bone that makes my shoulder stick with every movement. I do not really use my right arm for any chores or things as I cannot lift it above about a 45 degree angle without the pain. It is weird how random yet consistent the intense pain is. The stabbing makes me feel bones I never knew were there! Very odd to wake up due to a searing pain in one lonely little toe.

5th Item was my insomnia. Those with RA know how hard it is to get proper rest. I am up all hours of the night. This makes my RA flare more, makes me think more which leads to more depression, makes me stress more, making my ra flare even more and a bunch of other things!!! It SUCKS. I just have to figure it out though. I cannot take sleeping pills as I have 2 young kids I need to be available for if there is an emergency at night. So other than cutting back caffeine, relaxing etc....I will have to suck it up.

Well that was my attempt to gain control over some aspects of my RA and to switch things around as appointment after appointment with my rheum nothing changed. To sum things up I felt great coming out of the apt. I felt like I was going in the right direction.

The whole grabbing the bull by the horns thing did not work for me this time. It pretty much ran over me. All the changes led to nothing. They actually made things worse in most of the cases. So....day by day I will have to take things and hope that some adjustments will help.

It is Winning, I am not

I learned one year ago that I have an autoimmune disease called Rheumatoid Arthritis. My immune system is attacking my own body instead of the bacterias it should. It is in a constant state of war. 

Since my body has turned on itself, I have been in constant pain and severe exhaustion. I told myself when I was diagnosed that I could be strong, and not let it effect my life. It is. No matter what I try, I feel like I am fighting the impossible.  

      I struggle to juggle my life. In fact, I have not been able too for a year. I struggle with work, my kids, my husband, housework, errands, my emotions, and my health. I work 40-47 hours a week. Currently, that wipes me out and I am barely able to  do any more. I do what I have to for my kids. Yet, even they miss me. They miss that I cannot rough house, run around, dance, sled, ski, even get on the floor and play. I am physically so exhausted I have to give myself a pep talk to move at night. I lie as still as I can because everything hurts any movement is a trial.  My husband is missing the "old" me, the one that would take care of everything, making sure it was all done and was like the energizer bunny. He misses that"his" time is gone. I hate that RA is making me exhausted, cranky, and an overall bitch. I hate that everyday I see disappointment on my families face when I am not myself, when I am in pain and exhausted and short-tempered even when trying to stay upbeat. I feel that I keep dropping the ball. 

      I read other blogs of other people with RA or other chronic illnesses and am impressed at how together they seem. At how none of them let this miserable disease interfere with their life. I have seen kids with JRA doing great. It is great to see them play and dance.  I am not sure how they do it. I try to stay positive but after 365 days of pure exhaustion and pain it is difficult. I read their articles and think, Yes I can do this. Things will get better. I am still waiting. 

      I cannot juggle. I forget things all the time now.  My life has changed. It has changed. I can no longer fight it. I am tired of pretending I can. I used to be a social girl. I loved to hang out with friends, and family. Now, I shy away from it. I know that after an hour I will feel like crap. I know that my body needs the rest in any free time I can get. I miss my friends. I miss my family. I hate that I am letting it control me. 

    I now know that currently I am letting it win, and I do not want to. I need to figure out how to gain control. How to feel like my old self, how to juggle it all better. I need to feel the sunshine again. 

I hate that I am writing this down but I needed put it somewhere other than my little locked up box. Whiny blogs are not what I had planned for this and it seems like I keep doing it. I hate being weak.