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. 

Friday, July 5, 2013

The sky is blue!

As this summer races by I find myself looking for more experiences to give my boys within the limitations I can handle. I feel like I have done a good job so far. Earlier this summer we visited grandpa in Chicago. Loaded with pills including prednisone, pain pills, and more, we set off to explore the city. Man it was great, I pushed myself really hard and did it. I was dying by time evening came, laid in bed unable to move, but it was worth it. 

I find that even if it is painful to move it helps my mental health to do things. To push myself to get over the fatigue and just go. It sometimes takes some serious pep talks to myself! :) it might sound silly but I find my self inspiring. Maybe only to me but I feel like I am getting a handle on RA. That itself wants me to jump for joy. I have been in a fog and see it clearing. I am hoping it stays. 
While I still struggle with the pain and fatigue I can see a change in my mind. It's not so blue. Along with my depression easing some I have been eating healthy (as I should with diabetes) and the weight is starting to shed and my liver counts are down. Finally I can try methotrexate along with my infusions. Maybe this is the boost I need to start feeling less pain  and making it easier to get around. That is exciting! Any advice from those experienced with methotrexate?? I am nervous but hopeful. 

This post is sort of all over but I just wanted to jot things down and get it out! 

Today, the sky is blue and I plan to enjoy it. I hope you do to! Even for a walk, or just to sit, it does wonders for your mood and good for your body! 

Friday, May 10, 2013

Its OK to be not OK. Right?

Hello again! It has been a while since my last post. I have been busy with life, my boys and a lot of new illnesses!

Imagine to wake up one day with very little vision. So Scary! Standing up was an effort due to the stiff joints first thing in the morning always but add dizziness, and no vision to it and I was scared senseless. The thoughts going through my head as my day went on were insanely real. I was so petrfied and wondering if it would clear. I wanted to stare and burn the images of my boys faces in my head, each look, each emotion, an each smile. To never see them again would be a nightmare. It only got worse as the day went on.

Once it hit the afternoon I knew it was time to go to the hospital. After a few hours in the ER they transferred me to ICU where I stayed for 7 days while they tried to figure out what was wrong and to figure out why my blood sugar was so high.  The two years of prednisone has taken a toll on my body. It now is helping raise my blood sugars into the 600s. So, to make a long story short, I have developed diabetes and my meds were dangerously raising my sugars to the point of shutting down organs. They figured most things out and we are still working on some. My vision is better. Not perfect but with glasses I can see.

Two months later, sugars are good, liver still bad, have new glasses, and some other issues are in the process of progress. Most aggrevating is the pain is back and is worse than I was first diagnosed. My RAD is keeping me up, stressing me out and driving me crazy. Prednisone was the only thing that seemed to help some of the pain. To be in this much pain every day wears on my soul. Despair overtakes me. I am trying not to lose myself. I am trying not to abandon me.

I was at the infusion clinic last week and sitting next to an older woman around 75 or so. She looked at me and said, "I am glad I got RA when I was 70, I couldn't live with the pain my whole life". What do I say to that? I sort of just smiled and said "yes it's hard". She then responds "you are so young, I am sorry for you". Again, what do I say? I can appreciate that she understands the pain and can identify what I go through but want her to shush as it makes me think of the future. It makes me thing over the never ending cycles I now call my life.

I pray for peace. I pray for control. Yet,  I am angry. I know you have heard this from me before but I always seem to be. I am angry I have to go through this as a young adult. I am angry that my friends can live normal, have fun, climb mountains, ski, horseback ride, stay out dancing and overall, live. I am mourning the old me. My old body, The activities I could do, and most of all...my dreams.

I am not supposed to be angry. I am supposed to have faith and believe that it will all be ok. I feel weak. I know I am angry and try not to act on it, I do not do a very good job I guess as my 9 yo will say, "I can tell when you hurt bad because you are grumpy". I try not be but it is hard. I can be fine, and then another limitation or activity pops up that I cannot do and it starts over again. It is a vicious cycle.

I am acknowledging the anger now. I hope that the despair I have been feeling will go away with acknowledgment. I know I can overcome it, I am facing it and working on controlling it.

"A fool gives full vent to his anger, but a wise man keeps himself under control" (Proverbs 29:11).