Tuesday, May 21, 2013

Breaking Down

Last night after J and Muffin went to sleep, I was up watching TV waiting for my pain to stop so I could sleep too. As the commercials came on I started thinking about all the things that were going on in my life. I've been kind of emotional lately because I have applied for Disability. We should be getting an answer as to whether or not I am approved within the next month or so. I am so so nervous. I desperately need this disability. I need two knee surgeries, and further medical treatments that I can not afford on my own. It's hard to be stuck in bed knowing that I might get denied the coverage I desperately need while my neighbor across the street is on disability and clearly doesn't need it. He's always out in his yard moving things around and doing hard core physical labor outside. Makes me wonder why he was approved. I know I shouldn't judge. A lot of times I was sick and used to look normal and be able to hide my condition, but not anymore. This week I have to get blood work done and go see a doctor that examines me on behalf of Social Security Disability and I guess they are supposed to be able to determine whether or not I am disabled. It's strange to me. It's hard for me to put my health in the hands of people I don't even know. A perfect stranger will decide what I need and what I don't need. It doesn't seem fair. Although, one look at me and you can see I am in terrible pain. It's hard for me to trust they will make the right decision. I wonder if they really even care, or am I just another name on another paper?

On top of all the Disability anxiety, I am in the middle of an out of control flair. Every single joint in my body ( and I am not exaggerating) is swollen and keeping me from bending anything. I am moving like a robot, every move is thought out and planned before hand. My wrists and fingers look deformed.

So, there I was lying in bed pretty much at my wits end... And then... An Enbrel commercial came on... my biggest pet peeve. And I just started crying. For those of you who don't know, I HATE those commercials. I take Enbrel, and it somewhat works. I have to admit it has relieved some of my RA symptoms, but the commercials make RA seem like a cake walk. They start out with a lady with a pained look on her face rubbing her hands and wrists... Then shows Enbrel and tells what it can do then it cuts to the same lady on a freaking elliptical machine bookin it and sweating while she is smiling... Like Embrel cured her RA. I mean, I only know my own experience with RA. So, I can't really speak for everyone else. But in my opinion RA medication commercials should go something like this:

First it should show a woman asking for her husbands help to get off the toilet because she has a flair in every joint in her legs and feet, and can't lift herself up. Then it should show her crying REAL TEARS as he walks her back to bed. Then it should show Enbrel and tell what it can do... Then it should show the same lady watching her husband put higher toilet seat extension on the toilet so she can use the restroom by herself... And that's it.

I am not saying that people who have RA can't do hard things if you work at it, but some of those commercials make it seem so easy. When I am on Enbrel it helps control my inflammation and my pain, but I still feel impaired. And I notice that I still can not do a lot of things normal people can do.

Another commercial that bugs me is the golfing one. Where the guy says he can go golfing like a pro now that he takes Enbrel. If I went golfing, I can guarantee that the club would probably go farther than the golf ball because I wouldn't be able to grip the club hard enough to keep it from falling out of my hand. Anyway, lately I have been letting things like this get on my nerves because I am really stressed out. Guess I need to add another pill to the mix... A chill pill!



RA Tip Tuesday

So I decided to make Tuesdays a good tip day because there are so many things I've come across that have made my life easier...well maybe not easier but definitely more comfortable! I love seeing what kinds of things help other people with RA, and some of their ideas have helped me. So, I thought I'd give back, and maybe help someone else.
The first thing is called a bed or pillow wedge. J got me two of these from Bed Bath and Beyond. I believe they are about $40 each. Let me tell you, they are money well spent. I use these everyday and night. They can be used in different positions too. I have issues with my knees. So, I love to prop them up and shove one of those wedges under my knees. It takes the pressure off and helps control my swelling.
The next thing that I use everyday is a nice big king sized fluffy comforter. Even if your bed isn't that big, I think the bigger the blanket the better. I like to tuck and shove the blanket under my feet and arms for extra support. The more fluff the better when your trying to get your body to relax. I got my comforter at Ikea for around $40 as well. I can't sleep without it!
                                

Thursday, May 16, 2013

A New Attitude

Today was a hard day. I've had bronchitis for almost 2 weeks. I'm on antibiotics which comes with its own little list of side effects. I am on Enbrel which causes my immune system to be suppressed. Therefore I can not take it because I need my immune system to be able to fight off the bronchitis. So, this will be my second week not having my shot of Enbrel, and that is causing me to have the lovely joy of a flair up in every joint in my body, and feeling exhausted the second I wake up in the morning. Joy.
I was fortunate that J was here the first part of the day to help take care of Muffin, and the other half Muffin went with my mom to play with her cousins. That left me, home, alone with my body who seems to hate me. When J left for work, and my mom took Muffin, I couldn't help but feel a little like the Tin Man from The Wizard of Oz: A lonely pile of rubbish, unable to move and bend, left here to rust alone. None of this of course is the fault of my family. It's mostly me just feeling sorry for myself, but nonetheless I do feel alone a lot. From where I'm lying (While being bedridden waiting for knee surgeries) I feel like all I see is people coming and going. Do they know how lucky they are to be able to go out into the world? I ask myself. You never know how much you are truly blessed with until it is taken away. It does go both ways though. Do I know how lucky I am to be able to rest when I need to? This is not a luxury they have as they are mostly running around doing their duties and mine.
It is important to try and stay positive on days like these. So, I decided to change my attitude and look at my situation differently. As I thought of being a Tin Man (or woman in my case) I decided that instead of thinking of myself as lonely; it would be better to think of myself as being blessed with wonderful family and friends who help me as I travel down the yellow brick road of life just as Dorothy, the Scarecrow, and the Lion did for the Tin Man. And instead of a pile of rubbish, I would remember that I am of great worth. I mean a lot to my Heavenly Father and the people who love me just as the Tin Man was loved and cherished. As far as being unable to move and bend...well that one is hard to turn positive. However, the Tin Man held on until someone was able to come and help him become mobile again. That is something I also am doing. I am trying to have faith that there is someone along the road that will come into my life and help me walk again. Lastly, the more I thought about it, the more I realized that the Tin Man was never left to rust alone. Are we ever left completely alone? The Tin Man was blessed with a great big heart, and he didn't even know it. He was always blessed with the gift to Love, and that will bring you through the toughest trials and the darkest places...IF you let it. I have A LOT of love in my life. I know that I am blessed in that area for sure. The love that I have for my Muffin, J, and my family is what keeps me fighting. That is priceless.
So, in changing my attitude, and looking at things in a positive way, I was able to smile. I was also able to enjoy the last few hours of my day, and J & Muffin were happy to come home to a happy wife and mommy. Everyone wins!

Monday, May 13, 2013

5 Ways to Help Your Spouse Cope With Your RA

People often ask me how I am feeling. I usually laugh a little, and with a confident smile on my face I say,"Today I am feeling about 92 years old." They laugh along and we go on our way. Today I was thinking that as hard as it is for those of us who suffer from RA, I must be hard for the people around us as well. Especially those who love us the most because they honestly don't know or can't understand how we are feeling.
Today I put myself in my husbands shoes. Not literally of course, but I was just thinking what it must be like for him having a wife with RA.
For a long time he went on with a pretty average, normal life. He went to school or work, His wife stayed home with Muffin. She cleaned, did laundry, went grocery shopping, washed the car, etc. Things were going pretty okay. Then one morning his wife wakes up and can hardly move. He doesn't know what to do to make it better. He doesn't know what's going on. He is scared, but he is the man of this family. So, he hides it and does the best he can to make her comfortable until he can get her to a doctor. The day comes and the Doctor says,"Your thoughts were right, it's Rheumatoid Arthritis." So what comes next?, he thinks to himself. What will this mean? How can we fix this? Doc puts her on Meds that make her sick. She gains weight. She looks pale. Her skin is covered in rashes. She is tired, and angry. She cries at night. She cries all the time. She mourns for her old life. He watches all of this. All the while trying to be patient, but inside he is angry too. He didn't sign up for this. This was not in the plan.
For those of us with this disease, it is easy for us to understand. We get each other don't we? But for those around us it is not so easy. It is important that we imagine ourselves in the shoes of our spouse. They are not always sympathetic. They can sometimes be insensitive or say things they shouldn't, but we need to understand that in most cases they are trying their best. They didn't sign up for this either, and other than the physical pain we have, they are suffering right along with us. It is always good to remember to have compassion for those around us. Here are some ways that can help if your spouse or loved ones are having trouble coping with your disease:
1) Be patient
Hey, we all kind of have a picture in our minds of what our life will be like. Most of us have a plan for our lives. Places we will go on vacation, where we will live, what career path we will take etc. When you throw RA in the mix, a lot of those plans have to be altered to fit your new lifestyle. Usually that means it will effect those close to you as well. Give yourself and spouse time to mourn and be sad. It's okay to have those feelings. You have a choice when you are married to let something like this come between you or make your marriage stronger. Communicate with your spouse and let them know they can talk to you as well.
2) Don't Take it Personal
If your spouse complains to you about your disease..."You're so tired all the time." "I just wish you weren't in pain." "You never want to go out." ... Don't take it personal. This is their way of venting. More times than not this is actually a good sign that they are willing to communicate how they are feeling. There is no reason to get defensive over something you have no control over. Just be polite and listen then validate their feelings. "I know. I wish I felt better too."
3) Be Honest
If you feel bad, good, happy, sad, angry etc. be honest about how you are feeling. It doesn't do any good to leave others in the dark. You don't have to go around pretending you're fine because chances are one day you're going to snap. It's really not fun for your spouse to figure out why your freaking out all of a sudden.
4) Be Descriptive
Your spouse has no idea what RA feels like. It's hard to have sympathy or want to help when they have no way of understanding your pain. Explain to them in detail what it feels like.I usually like to add a little humor to lighten the mood a little. On bad days for example you could say something like," I feel like someone stuffed toilet paper in all my joints." I use that one when I feel a lot of swelling. Or you could say," I feel like My bones are on fire." Come up with your own stuff, but it is helpful to try and explain it in a way they can understand. Taking them to your doctors appointments is helpful as well.
5) Make the Best of it
Be there for them in ways that you can. You may not be able to make a nice meal all the time or do a lot of the things you used to. You can be a good listener though. You can help make decisions. You can do other things to show that you are still here and you care. Stay positive. Smile once in a while. When you're feeling good, be a joy to be around. Nobody likes a grumpy pants.
These are just some ways that can help. I am not a relationship expert or anything, but these are just some things I've learned along the way. Hope it can help! Good luck!


Amanda & J

Tender Mercies


It was Mother's Day today. It was 5:00am., and Muffin crawled into our bed. I usually let her fall asleep again then nudge J to take her back to her bed, but she nuzzled right up to me. In that moment it dawned on me it was Mother's Day. I was flooded with overwhelming thankfulness for this precious child my Father in Heaven trusted me with. So I nuzzled right back and we fell asleep all together... MY little family. I woke up (after J let me sleep in) to balloons and two pink cards lying beside me. One was from Muffin, and one from J. Perfection. The whole day I was free from RA. I was able to just be. I was still confined to my bed, but J and Muffin made me forget. We just enjoyed each other. I love days like this. These days are tiny little tender mercies that I know are from The Lord himself. A day to rest from this trial; to regain my emotional and spiritual strength so I may endure the hard days ahead.



Saturday, May 11, 2013

Answers

Here I am at 1:39am. Lying in bed listening to J snore and Muffin quietly stirring in her bed via the baby monitor. She is 4... I think to myself. Why do I insist on still peeking in on her in the quiet of the night as if she was 4 months old. As I sit here in this dark quietness, I can't help but be conflicted by my thoughts of thankfulness and my thoughts of fear and dread. I am thankful for my little family who is for the most part happy and healthy, my home, my faith. It's hard to focus on those things though when my life is so filled with fear of things unknown. So many things are up in the air for me right now. When will my suffering end? Will it end? Will I ever get my life back? Will I ever be the person I once was? When will I get the surgeries I desperately need? These are all questions that go through my mind all day every day. The questions that get me really upset sometimes though is: " Why must I suffer? , I have the faith...why won't Heavenly Father heal me?, What am I supposed to be learning from this? ... All of these questions, and not many answers. It's hard to live with no answers. I feel ignored, alone, and scared. I sink down down down into my own little world inside my head... I feel the sadness, the darkness...the fear of the unknown.
When I am in these dark places, something miraculous always happens. J comes home to lift my burden, or the sunlight shines just perfectly on Muffin's sparkling blond hair and she smiles... And I am pulled back into the light...the happy, fluffy, dance on a cloud joy that only my Father in Heaven can bless me with. In those moments, I know he sees me. He knows me. I am not ignored or alone. He knows just what I need in that very moment. Even though subtle like a whisper ... It is still proof to me that my Heavenly Father loves me, and that's the only answer I need to get though this.