Wednesday, August 13, 2014

Remicade scare!

I am being reintroduced to remicade infusions for my RA. I have been on it before with no issues. Imagine my surprise today while getting the 2nd infusion, everything turned bad. Laying there doing my medication meditation (imagining it flow through me) when I heard my heart beat in my head. Weird I thought. I turned off pandora and sat up. Within 30 seconds of the first symptom I could not breathe. Something was sitting in my chest, I turned red, got hives, and felt lightheaded and like vomiting. I couldn't even call the nurse, a lady next to me started screaming at my gasping. They quickly removed the IV and have me a steroid shot and oxygen. I was freaking! It took about 30 minutes to calm down and then they were like ok let's try again....what?? Are they crazy? It was scary! 

My 4 year old is allergic to tree nuts and has had some severe reactions. I now understand the fear. OMG my heart goes out to him! I never realized the fear it brings. To not be able to get air in and think oh my gosh I will die. Poor guy!! 

So back to my appt.  :) I insisted on seeing the doctor first and he informed me it seems to happen on reintroduction more than any other time and that with the steroid I should be good to go. Trusting him I went ahead and nervously went back to the infusion room.

The restart went smoothly for about thirty minutes then I had an intense burning and itching sensation in my hands and feet. I calmly let the nurse know and she stopped the infusion and gave me another shot. Geez. I have been on many kinds of infusions, including remicade before and nothing has ever remotely happened like this. It is so confusing and scary. A 2 hour infusion turned to 5 and left me anxious and exhausted and due to the steroids will not be sleeping anytime soon! 

Have you had any reactions? How did you get over the nerves? It really is disappointing as remicade worked better for me than most. I also have been having a lot of fiber myalgia symptoms and the doc is thinking dual diseases. Great. What a day! 

Friday, August 8, 2014

Xeljanz Fail

I know I wasn't the only one that was really hoping that the new drug for RA was the miracle cure we were waiting for.  Since it is in pill form it also is soooo much easier and less painful! No more infusions and injections! Yay! 

I wish it went that well. I hope that for some it is. It was not my miracle. After 4 month on the medicine I opted out. I prayed and prayed that my pain and inflammation would decrease using it but it did not. 
I hate my body. It is such a traitor. It only got worse and I am back on the dreaded prednisone and infusions. I wait for the remicade to get in my system and hope it comes fast. I am even desperate enough to imagine it spreading through my body and being absorbed. Hey anything can help right? It might not work great but at least on the infusions I can go to sleep at night without crying. I am tired of being such a B. Yes a capital B at that. I know it, I try to stop it but I will be the not be the first one to tell you that chronic pain makes you cranky. So as I lay here imagining my meds are easing the inflammation and trying to calm myself I realize I still have hope for that miracle cure. So all you brainiacs out there keep working hard. We appreciate you and are hoping you are successful! 

Wednesday, July 2, 2014

Letting go

I need to surrender my worries and trust that there is a plan. 

Wednesday, June 11, 2014

As I lay here

As I lay here in bed at 4 pm due to pain I reflect. Afternoon thunderstorms used to be my favorite. I loved the sound of thunder, the smell of rain and the calmness it brings. Now, those storms bring pain and frustration. The day can be going well but as the weather shift so does my fatigue and pain. I end up in bed. Praying for relief, for healing and peace. 
As I lay here in bed, my 4 year old is rejoicing. He has his stool out and has been trying to get things in the desk that he cannot reach, nor will I let him. I tell him no and I get his devilish grin. He stops, takes his stool to the bookshelves, also in my room gives me the grin and says "don't look mom, close your eyes and rest" I pretend to and see him once again going for something he doesn't need. As I lay here catching him I think about what he is feeling. The freedom he probably feels and pride when he reaches that big bottle of lotion. I watch him take it down without scolding and ask that he puts that lotion on my legs. He was more than happy to. 

Do, as I lay here in pain, with the storms raging, there is sunshine. He is 4. 

Sunday, June 8, 2014

The ride

Ever feel like you are always on a roller coaster? Up and down, twists and turns? I find myself on a never ending ride that I can't seem to get off of! I am beat. I feel like a...I don't even know I am too tired to think. This ride is not any fun. 

Wednesday, October 2, 2013

A hurting girls words

I know when I was diagnosed I looked everywhere I could to find out how people with RA lived. How they felt about having the disease, how it affects relationships and their old lives. It is hard to come across things. A lot of people have awesome blogs about research, and the disease. There are some about every day lives, how positive people can be, they might be. I try to be positive. It is hard. RA effects  people differently. However, we all live in pain. If you don't want to hear the bad sides, don't read on. I plan on giving some really raw opinions on my life and RA.

Above all, RA sucks. It sucks bad. There is no way anyone could tell me different. Yes, somedays are better but even good days end with pain. 

Second, say goodbye to the old you. No matter how hard I try, I cannot do the things I did before. I cannot be the person I was before. Not physically or mentally. 

Before, I was optimistic, outgoing and a very busy person who did not slow down. Now, I am not optimistic. There were days I would be; only to get slapped down with a flare lasting months. I am an introvert as I don't get out much because of the pain. When I do I am miserable and not myself. Not only did I have to slow down I had to dead stop. The last few months I have been in a horrible flare. Somedays I cannot move my fingers or wrists. Somedays it is my shoulders and knees. Never relief. In the last week I have driven once, been out of the house twice and wanted to stay in bed because of the pain everyday. I get up only for my kids. 

I used to be a super mom. Now, before my three year old jumps on me, climbs in my lap or wants picked up I have to say that I can't. I have to ask him not to touch me. It hurts. Both the touching and the look in his face. I cannot get this time back. I used to look forward to outings, to doing things to make my kids smile, now I Dread them. I do them as much as I can but know I will be paying for it. I have to try though. I cannot bear to hear my kids tell their dad "mommy doesn't like me anymore,she won't hold me or play." 

Lets look back...RA sucks, you will not be you anymore, you will feel guilty, your attitude changes and much more I will get into later as my hand is cramping and I cannot write anymore. Sorry if this is too real but I wanted to get it out there. Yes it could be worse. But it still sucks. 

Wednesday, September 25, 2013

Up, down, up, Down

This disease is seriously driving me bonkers! It can go from feeling great to the greatest pain in the world. The last few months have been tough! I was allowed to try Methotrexate which when added to my infusions has been known to help immensely, however, my body betrayed me again. After taking it one time my Liver enzymes jump to tens times the normal. So.... Was quickly taken off. 
     About two weeks after my infusion the pain started. It was severe. Some nights I would cry all night. Some days I could not walk. My fingers were not working, I couldn't straighten them or grip things. I was quickly becoming less independent and had to teach my ten year old how to pull my hair in a ponytail. Laundry piled up and then I lost someone close to me from cancer. The stress only made it worse. I was due in for an infusion and explained about my pain. They increased my dose and have me some IV steroids. I felt great. For exactly two weeks I could do things and not worry about how it was going to effect me later. 

Why must it toy with us so? Why does my body attack it self with force?? First my fingers and wrists. Next knives were attacking my shoulders and knees, and finally my ankles. The pain is like nothing I have felt. It is much worse than normal. I can dope myself up and make it through a few hours a day but pay for it later. After the funeral I literally could not move anything. In tears all night I was ready to go to the ER. The only reason I didn't was I didn't want to wake the kids up. I couldn't stand, couldn't roll, just laid there on my back stuck. It was horrible. 

My heart was breaking when my 3 year old ran to his dad and said "mom doesn't like me, she won't give me a hug" oh baby how I want to. We have explained my disease but it is not easily understood to a ten year old much less my three year old. At least once a day I have to tell him, baby I cannot pick you up right now I am hurting. Somedays he goes with it someways it bothers him and we cry together. 
The pain is extreme. It is breaking me currently and need to figure out how to overcome. How to stop my body from betraying me. I want my life back. And I want it back for more than two weeks.