Wednesday, July 23, 2014

Look WHAT I did (with RA) Wednesday

I'm going to try any do a little project every Wednesday, and share it on my blog. So, today I decided to finish a project we started on our recent trip to California! It's an idea I have been wanting to do since before I had Muffin. It's a sand handprint, and it was so much fun (and super easy) to do! In fact I think we are going to make it a little family tradition, and do it every time we go to the beach! Let's hope we go enough times to fill a whole wall with these hand prints! Ha!

Here's what you will need:

At least 1 cup of Plaster of Paris (you can get this at Michaels or any craft store)
Water
2 foil pie tins (from the dollar store)
Beach sand
Glue gun and glue sticks
Shadow box frame (I got mine at IKEA for $9.99!)
I sharpie fine tip pen

Step 1: Fill the pie tin with beach sand all the way and level it off on the top. Then press your hand or foot or whatever you want an impression of into the sand. Make sure to firmly press and make the imprint at least 1 inch deep into the tie tin. This will ensure that your hand print will be thick and won't easily break once it's dry.

Step 2: Next fill the other pie tin with equal parts Plaster of Paris and water. Mix it together until it is a smooth consistancy. (Like cake batter) If it's too watery add more plaster and vice versa.

Step 3:Pour the plaster mixture into your sand imprint. If you want your print to be like mine then let the plaster over flow a little. If you just want to see a hand print then make sure your plaster stays inside the print. Tap it on the ground a couple of times to make sure there aren't any bubbles.

Step 4:Enjoy the beach with your family until the plaster drys. After it's dry lift the print out of the sand and dust it off. Your beach keepsake is done! We took our handprint home and let it sit for a few days just to let it harden as much as possible. Then I... Step 5: dust off any extra sand from your print then set it aside. Open your frame, put heaps and heaps of hot glue on the back of your sand print and glue it to the lining that came with the frame while centering it neatly. Step 6: Let the glue cool. Take your Sharpie pen and write a name, place, and year in the corner. Step 7: place the print in the frame, and hang or put on a shelf Step 8: ENJOY!!! We really had so much fun at the beach this time. I was in my wheelchair on the sidewalk. I couldn't go on the actual beach, but I'll be out there soon enough! I'm working really hard on being able to walk again. It's a lot of hard work, but when it happens I just know my whole life will change for the better. I'm so excited for what the future holds! That's what I think about when I look at this sand print... For me it represents hope.

Wednesday, July 16, 2014

My Physical and Spiritual Updates

For a few months now I have been thinking about this post and praying I find the words I need to write it. I have sat down countless times to write, and every time I get more emotional than a pregnant woman eating ice cream while watching "The Notebook". I mentioned in a past post that I was having a hard time celebrating my small victories. Well, since then I have been showered with nonstop blessings, and I don't have a choice but to be happy about it.

 So after a loooong time of switching from med to med... and doctor to doctor, I finally found a team of doctors I can trust. My Rheumatologist is very attentive, and actually examines, and listens to me at every visit. Right now she has me on Enbrel, methotrexate injections, and of course that comes with daily folic acid. I have tried the methotrexate (they call this the chemo med) before in pill form with a low dose, and absolutely nothing happened. So my new Rheumatologist (Dr. O) put me on injections with a higher dose weekly. I haven't noticed much as far as the pain goes... That's still there, BUT I do notice I have more energy, and that's always nice. The down side to that though is it makes me really dizzy and nauseated and I have lost quite a bit of my hair. But hey, I'll take less hair as long as I can stay awake all day. Ha! So Dr. O referred me to a pain management doctor. After some new X-rays we found more deterioration in my knee joints, and he seemed very concerned about how fast it is happening. So, he suggested I do a round of treatments on my knees where a synthetic cartilage is injected into the knee. I just finished the last of 5 weekly treatments this past Monday. I have noticed a small decrease in pain and inflammation since we have started. I am still recovering from the last treatment, but I am hopeful it will allow me to be able to use my crutches very short distances, and possibly start some physical therapy. So there is my physical update folks! I am happy I am finally starting to have some progress. I have to be honest and say that I struggle everyday, and I'm in pain most of the time, but I am really feeling hopeful that there might be a light at the end of this tunnel even if it's just a tiny speck of light right now.

As I look back on the last 4 years (it will be 5 this October) with Rheumatoid Arthritis, I really am humbled and I get tears every time I think about the miracles that have happened in that time. This last month my family made a Father's Day gift for my grandpa. He is such an amazing man. He's going through some tough things physically as well. So, we all decided to write him letters to him telling about our favorite memories of him, how much we love him, and really we just wanted to give him a little pick-me-up. This letter got me thinking a lot about my own struggle with my health. So, I decided and really felt like I needed to share a piece of that letter here with you all. I wrote:

 ...Grandpa, I know you aren't feeling well lately. It hurts my heart to think of you having to deal with being sick. As you know I myself have been dealing with my own illness. This October will be my 5th year of fighting RA. To me that's exactly what it has felt like... Fighting. I feel like I have been fighting so many wars, and I would be a liar if I told you there weren't days I am just plain tired. I get tired of going to see doctor after doctor, and watching the clock to make sure I take my medications on time. I get tired of feeling like an invalid while being pushed in a wheelchair. I get tired of trying to explain the way I am feeling to everyone all the while knowing I can never put it into words in a way anyone can truly understand. It's a lonely place. It's a sad place, and when I have those days I often wonder what I am good for. My body doesn't allow me to do what my mind dreams of. I can't push my baby girl on a swing at the park, I can't run and play with her like the other mothers. I can't cook and clean and grocery shop. If I can't do what I have been taught my whole life I need to do as a wife and mother... Then what good am I? These are all thoughts I have from time to time. I have found that it is normal to feel depressed, and that I need to let myself feel sad. Through much prayer, I have been taught by a loving Heavenly Father that it is okay to mourn the life I once had. The life I thought I was going to have, and find my new life. The new life I have found is so sweet. Instead of finding joy in pushing Daisy on a swing like I used to, I now notice her smile as she asks me to watch her pump her legs, and learn to swing herself. In those moments I soak up everything. I am now able to see not one blessing but many. I notice her giggle, I see the beauty of the sunshine as it hits her beautiful blonde hair and makes it sparkle. I see her look up into the sky without a care in the world, and most of all, I see that just having me be there to watch her is all she needs to be happy. In those moments I realize. I am good for something. I am needed. I am wanted. I am loved. It may not be the way I thought it should have been, but like I said before it is oh so sweet. Grandpa, I can understand your trial at this time. I really can. I know it's so hard to have mind and body at war with eachother. My only prayer for you is that after this war you are faced with, after the fighting, and the exhaustion, and after you let yourself be sad; that you are able to look up and find a way to keep going. You too are good for something, you too are needed, and wanted and most importantly you are so very LOVED.

 In a nutshell that is exactly what my journey has been teaching me. All things are in the Lord's time. He knows what we need. He knows how to help us grow, and he knows us better that we know ourselves. This has truly been and continues to be a war I am fighting. There were times when I honestly didn't know if I could keep going. I would pray at night and pour my heart out to The Lord, and beg him to heal me. I was feeling so sick and lousy that I really was scared that this was it for me. I don't want to be dramatic but I am sharing this in the hope that it will help someone, anyone out there who is dealing with a struggle in their lives. Prayer is what got me through it, and continues to help me. Even though I couldn't put into words that would explain to others how I felt, I knew I could always rely on my Heavenly Father to understand just what I was feeling, and I knew I could always talk to him. There were countless times I'd wake up weak and tired, and pray to The Lord for the strength I needed to get through the day. Then half the day would go by, and I'd say WOW... He really did bless me with that strength I asked for. I know that what I am going through is for a reason. It is to help me grow, and it is to help me and my family become closer. I read a quote recently saying:


 It's oh so true. I have experienced it first hand. I have never been left alone, not even once. I have been uplifted and comforted the whole way, and I continue to benefit from the blessings of prayer. I continue to feel the outpouring of blessings and love from my Heavenly Father, and boy am I a lucky girl now that I can see it all and notice how The Lord is teaching me in my life. He didn't give me the life I was asking for, he gave me one that is better that I even knew existed.

Sunday, January 19, 2014

How to Allow Yourself to Celebrate

  Hi guys! It's been a while! I took a long break from blogging through the Holidays, and now I'm back with something that has been on my mind lately. I'd like to discuss the topic of Celebrations. There are many kinds of Celebrations that we as sick people have to learn new ways of navigating.
  The first kind of Celebration I'd like to address is: The Family Gathering. With the Holidays just behind us, there is no doubt that most of us have been to one or two of these celebrations recently. I did, and I realized how I have become so different over the course of my illness. There are positives and negatives for me. I personally LOVE my family. I love the way the house feels alive when all my nieces, nephews, brothers, sisters etc. are all together. It's complete blissful chaos. I love the way the young ones are excited to show and tell me their latest news. I love joking around with siblings. The food, the smiles, the interest in my well being are all super awesome. However, I don't know if this is just me, but there are brief moments in between the smiles, and hugs where I feel like I am only a fraction of the person I once was. In family gatherings past I was the fun auntie that was right at the bottom of the kid pile. I was the one outside playing games, and braiding long strands of hair. I remember loving to play. This year I was so low on energy, and I just felt so sick it was all I could do to just sit in my wheelchair. I just felt so so tired, drained even. It makes me sad to wonder if these little ones will remember me the way I was. I miss being so close to them. I'd be a liar if I said it doesn't make me sad. Even with the occasional small times of sadly missing the past, my family knows how to snap me back to the present. All it takes is an innocent hug from the kids, a joke from my bro, or an offer to help from my sisters, and I am back and grateful for the life I have now. It's not ideal, but boy am I lucky to have a huge group of people that want to help me through it.
  The second kind of Celebrations I'd like to write about are: Personal Celebrations. The kind that are just for you. Let me explain. My RA symptoms started for me 4 years ago now, and A LOT of not so great things seemed to be happening one after another. It felt like I was getting bad news every few days for years straight. I literally felt like every path I took to get help or get better turned into a dead end. I spent the last year bedridden waiting and praying in the deepest feeling of desperation for someone, something , or any way to relieve the pain I was feeling so I could get a piece of my life back. I couldn't participate in a lot of family gatherings. I couldn't be the wife or mommy I wanted to be either which was actually the worst part for me than anything else. I completely lost my ability to walk or even get dressed on my own. Then one ordinary day, I got a call from Social Security that changed my life. I was finally awarded insurance. This call didn't automatically change my lifestyle... I have done A LOT of hard work, visited numerous doctors, and am still fighting this disease, but I can honestly say things are getting better for me. I am finding and trying new RA treatments,tweaking nutrition, and I am getting help. The me today is in a much better place than I was this time last year, and for that I should be CELEBRATING! ...Right?! Well I am here to say it's not so simple. Try as I might, I am finding it hard to let myself be excited or happy even. Gosh I don't want to sound ungrateful because I'm really not. Like I have said before... Being sick messes with your head. I have lived so long in a state of being so unsure about everything. I have been fighting for so long, and crying for so long. Now, these small personal victories I am experiencing seem well, kind of scary. It can be hard to allow yourself to let go and celebrate. It can be hard to trust the positivity, after a long time of feeling defeated. I realized I was doing this when I started to loose weight. I am down 23 pounds now, and each time I got on the scale and showed a loss... I didn't get excited. I was just eh. Whatever. WHAT?! What was I doing? I thought I'd be jumping ( or in my case bouncing in my chair) for joy. So I went and said a prayer, and cried to my Heavenly Father. I felt so confused. Then when I was done, I looked up and realized that this is life. Sometimes things are going to be really crappy. Sometimes things are going to be wonderful. What is important is that we learn from the bad days, and ALLOW ourselves to CELEBRATE and be happy on the good ones. I could wake up tomorrow morning and have a massive painful flair, and not be able to leave my bed for weeks. So why not allow myself to enjoy these good ones? What could be the harm? I can't let myself be brought down by the fear I have of my RA. So YAAAY!!!! I've lost 23 pounds, and I'm going to loose more! I am feeling good, and I am on my way to walking! I'm going to stop writing now, and I'm going to celebrate! Find something you can celebrate too!

Tuesday, November 5, 2013

Finding Your Balance

I've been doing a lot of thinking lately. There are so many people with RA who ask me, "How can you possibly be truly happy with this disease?" I have been pondering this question that seems to pop up again and again in my conversations with those who suffer with Rheumatoid Arthritis. I think I finally have an answer. It is one simple word... BALANCE. As we all go through life, it is important to make sure that we are in balance with all the different needs we have as people. We go through different cycles in life where we may focus all of our attention on one aspect of our lives. We tend to throw all of our eggs in one basket. Whether we are mothers and we are giving all of our time and energy to our children, or we have a project at work that demands complete commitment. If we focus too much on one thing in our lives... We tend to become unhappy. The same applies to those of us who suffer with RA. While thinking about BALANCE one day I began to doodle on a sheet of paper in my journal, and came up with my personal " Cycles of RA". I'm hoping this can help some of you out there. Your cycles may be different, but I think that it is much easier if you can map them out. That way you can pay attention to where you are physically and emotionally with RA. It also is helpful to come up with your own cycle map and show it to your family so they can get some sense of where you are coming from. So mine is pictured above. As you can see I have a Physical and Emotional Cycle I tend to repeat over and over. I always start out pretty Content and in a place where I am accepting that I have RA, and I am dealing with it okay. Then an "Opportunity" comes up. An opportunity can be anything for me since I am pretty much in bed all day everyday. For me it is an invitation to meet for lunch, a birthday party, or going out with my family anywhere. At that point I have to decide whether I am going to say,"Yes."and feed my physical self, get some exercise, go outside and feel the sun on my face... Or if I am going to say,"No." And suffer emotionally, be sad, but get extra rest and spare my self days of endless pain and exhaustion. The trick is to BALANCE the two cycles. If I say yes to too many things, and use up all of my energy....then I get myself in a really bad place physically. Yet if I say no too many times, I end up depressed and sad. So really if you can say to yourself, " Hey I can't miss this Baptism it's too important." Then you have to be willing to go through the other steps in your cycle. There will be some serious pain coming your way, but it might be worth the pain price. There are times as well when you will have to say no to people. You just have to sometimes.. It's a reality, just don't catch yourself saying no too much either. Does this make sense? Everyone has an adjustment period when you are diagnosed with this disease. It Is REALLY very hard to adjust and accept that your lifestyle has to be different. The sooner you can find Your "RA Cycles" the better. Then you can keep track of where you're at, and make lemonade out of lemons! Good luck guys!

Monday, August 12, 2013

The Mommy of My Dreams


I think the hardest part of this whole experience is not being able to be the kind of mom I'd like to be. It is my testimony that I have been called by a loving Heavenly Father to be a Mom to this little girl we call Muffin. I have been trusted to raise her, and help this beautiful soul blossom into the person she is meant to be. The only thing is my plan for this whole mothering thing was the polar opposite of what The Lord had planned for our lives. So, I decided a while ago to start writing Muffin a letter every Sunday. So when she is older, she can read these letters from her mom, and know how much I love her. I have decided to share one of these letters on this blog to inspire other Moms out there with RA or even those who don't, to write in a journal or just write. It has been such a great outlet for me to express my feelings. So with that being said, here is my letter:

My Dearest "Muffin",
  This morning you came in our room and yelled,"SNUGGLE!", then crawled into my fluffy white comforter with me. You snuggled right up to me so close I was startled when I felt your ice cold feet on my leg. These are the times I cherish. I file these memories under "THINGS I LOVE ABOUT MOTHERHOOD" in my mind. You are so sweet and pure, especially first thing in the morning when you are freshly rested and happy. It was church day today. So after we snuggled I got you ready for church. You wore your new pink dress with daisy flowers all over it. I looked at you all dressed up and thought... She is perfect... To myself as you showed me you could twirl. I love seeing you so carefree and full of life. As you know I have been pretty sick lately. As I lie in bed I feel much like a spectator in my own life. Little moments like this morning watching you twirl are like little pieces of heaven for me. It was like time slowed down in that very moment, and everything was slow motion. I drank in every detail. How you spin on your tippie toe, how your new pink dress ruffled and flew up, and the sun caught your blonde hair and seemed to dance on every strand making it sparkle and shine. Those are the moments that keep me strong. My love for you is what keeps me fighting and happy to do so. So thank you sweet muffin. You are the reason I get up in the morning.

Love Forever and Ever,
Momma

Ps-
Here is a little poem I wrote for you today:


The Mommy of MY Dreams

Oh little precious child of mine
Can you ever know my love for you?
To give you everything your little heart wishes,
Oh the things that I would do.

Will you ever know how my heart breaks
when  you ask me to dance or play.
I cry inside and beg Father in Heaven
To give me more strength today.

In my dreams I can run, and jump and play
Even go down some slides
I can hug you real tight when we say goodnight
And give endless piggy back rides.

I hope you can see this disease is not me
I'm going to fight this each day
The mommy of MY dreams...someday I'll be
And that's how Im going to stay






Sunday, August 11, 2013

Doctor Visit Update

This last week I was able to go see the Orthopedic Surgeon. It was a pretty eye opening situation to say the least. On the way to the appointment I couldn't help but think of everything it took to get to this point. My husband did a lot of the work for me when it came to getting me some insurance. I was thinking of all the trips to the Social Security office he made. A lot of those trips were at the butt crack of dawn too so he could ensure a good spot in line. There were endless phone calls, research, and talking to people who could give us any ounce of insight into this Disability world. He worked so  so hard. There were prayers said on our behalf, there was a lot of crying on my part, and begging my Heavenly Father for the chance to see a doctor. So after all of that... FINALLY going was a little surreal.
The butterfly's in my stomach decided to show up as we pulled into the Docs parking lot. "This is it!" I said, as I sat in my wheelchair. We went in, and we were blown away at this place. The office was super fancy, and seemed to run efficiently. After signing in, we were promptly called back. The nurse took my blood pressure then after a brief look at my x-rays told us I needed new ones. So I was wheeled back to get some new pics of these bad knees. The lady who took them was super nice, and let Jason come back to help me get into the right positions needed for the x-rays. It hurt a bit, but it wasn't near as bad as the other place that I went to last time. This office seemed to have better equipment, and much more room which makes it a lot easier on patients. Following the x-rays I was wheeled back into the exam room. Jason and I were surprised when the nurse was able to pull the x-rays right up on the computer. It was so obvious that my knees were bad. The x-rays were showing some bone on bone action.
After waiting for what seemed like forever, the Doctor came in. He looked at the x-rays, and make a disapproving sigh and began telling us his thoughts. He said that he could clearly see RA in both my knees. He said that there wasn't much he could do to help me though since I was still to young to have knee replacements done. He explained 4 different surgeries that could be done, but he doesn't recommend doing them because I was too young and would need another replacement too early in my life. So he was basically saying he'd be subjecting me to a lot of pain later in life to save my knees now, and he didn't see how that would be beneficial to my health.
So that was basically what he was saying. I'm not sure though that I totally agree there isn't anything he could do to help me. I mean what am I supposed to do for the next ten years? Lay here? So, Im sure he is a good doctor, but I think I will be getting a second opinion. I want to LIVE my LIFE, and what ever I need to do to get walking, Im going to do. Back to researching Doctors!

Sunday, July 28, 2013

Dealing with Negitive Comments

Once again I am up way later than everyone else in the house. It's about 1:40am., and my legs are still spasming. I'd try to go to sleep, but I know I'd just get annoyed when I am almost asleep and my leg does a funky dance without my permission. So, I am lying here bored. I feel as if I have seen every pin possible on Pinterest, and I don't really want to start a movie this late on Netflix. This is the story of my life. There has been something on my mind lately that I feel that I need to share. It is something that I have learned since my RA switch decided to flip on. I don't want to sound preachy since this is something I sometimes still struggle with, but try to keep in check. So, with that being said, here's my little tid bit of knowledge. I would like to address the topic of... Dunt Dunt... Daaaa... Judgemental People. Yes yes, we all are guilty of harshly judging others for this reason or that. I don't know why we do it. I am guessing it is part of our human nature. In a lot of ways it is how we form an opinion about things. So, for that reason making judgements about something is not always bad. I will admit, I feel that I used to be very judgemental of others and how they may dress, or their life choices. It was a sign of immaturity on my part, and if there has been anything good that has come from me having RA; I feel that I have changed a little in that respect. However, I am not saying I am perfect. I still sometimes catch myself doing it. The thing is though that I am feeling what it feels like to be on the other side of those harsh judgements. I don't talk about it a lot, but I do notice the stares and whispers when I am out with my family in my wheelchair. Since I have been bedridden, and unable to walk and on steroids, I have gained weight. I look puffy, and not myself at all. People look at you and are immediately curious. I can almost hear their inner dialogue. You'd think it was just my insecurity right? Honestly though some people don't even try to hide the fact that they are staring and whispering about you. Some even point. In the past I have also experienced overhearing people talk about me. I have seen and heard things even people whom I consider friends have said that are negative about my appearance. So, with all of that happening, my first instinct was to get defensive. In the beginning of my experience with RA I would get very angry and hurt when people would call me lazy. "She still looks normal, and She doesn't look or act sick. So, why is it that she sits on the couch all day? Why can't she keep her house clean? For Heaven's sake brush that poor muffin's hair.", are all things I over heard people say about me. At the time it was very difficult for me to not take comments like that to heart. I would cry about it a lot mainly because they were all things I felt were true. I felt lazy. I felt useless. The longer I had RA I began to realize that having a disease like this can mess with your head a bit. I would forget that with RA comes pain, and for me extreme fatigue. I could sleep all day and night and still wake up exhausted. I felt weak and moody. When I was in those dark times it was tough. Then one day I had an "Ah ha"moment. I woke up and I felt good. I mean I still had pain, but I felt rested and strong. I got out of bed, went grocery shopping with Muffin, then came home and cleaned the house. Afterwards, I made dinner, bathed Muffin, and got her ready for bed. By the end of the day I lied in bed thinking back on the day with a smile. Then in hit me. I really have no control over this RA. All of those days I felt icky were not as a result of anything I did or was choosing to do. It's not my fault. I'm not lazy. I am just sick. That is when I started to accept my situation, and I also stopped listening to all the comments people would say. Another thing that I realized was that I was also being a judgemental person. The things people were saying were mean, and I'd immediately think they were mean or bad people. I'd start to dislike them or shoot a dirty look their way, or just avoid them all together. I realized I needed to change my behavior. Being angry was a decision on my part. It wasn't anything that was helping me either. Over time I decided to cut people some slack. The comments are sometimes mean, but honestly you can't judge someone for saying things about something they can't understand. If they really knew what it was like to have RA, they wouldn't judge so harshly. Instead of giving dirty looks to people staring or whispering, I just look at them and smile. Being cheerful and happy looking has actually opened up conversations with these people, and they then can feel comfortable asking questions about my condition. The more they are educated about my RA, the more comfortable they feel around me, and that makes me happy. I figure, if I can be an example for people, and talk about my illness, then maybe next time they see someone in a wheelchair who might be on the heavier side... They might not be so quick to judge them. It's a win win situation. So in the end, I'd just like to say, cut yourself and others some slack. Choose to be happy no matter what you situation may be. Open up the lines of communication, and let people in. You will never regret it.

Friday, July 26, 2013

The Latest

I honestly have thought of writing another post for almost a month, but I think I put it off because writing always makes me think through things. A lot of times, I'd rather not think. It's easier that way. I don't really have a lot to complain about really. The last few months I have been blessed with quite a bit of what I have asked The Lord for. I've got word from Social Security that I was approved for SSI (Social Security Income) and with that comes limited medical coverage. I was found to be medically disabled, but was denied regular Disability Benifits with a lifetime of Medical Insurance because of a technicality. We are going to appeal, but I am grateful that in the meantime, I have been blessed with the coverage I've got. At least I can get the ball rolling, and hopefully get the surgeries on my knees that I need to be able to walk again.

Oh how I miss walking. It's funny how you can miss something so natural to your body. Walking is like breathing. It's something that you just expect your body to be able to do. It's something you don't really think about. You just do it. When your ability to walk is taken away, it feels like your mind and body are in constant conflict. I can't tell you how many times I wake up in the middle of the night, go stand up to walk, and get a shooting pain up my legs instead. Brutal reminder, I think to myself. As frustrating as it is, deep down I thank my Heavenly Father that it isn't permanent. I have the opportunity to someday be able to walk again. So, for now I just try to keep the picture of myself walking on the beach with my family, and riding rides at Disneyland. Those pictures are what keep me going.

I am finding that with the good comes the bad. I am covered insurance wise, but I am experiencing some anxiety over actually taking steps to surgery. For so long everything was at a stand still. I couldn't see any doctors regarding my knee problems because we simply couldn't afford it. Now that that obstacle is out of the way, it's time to make those appointments and face the fears. What exactly will it take to get me walking? What treatments will I have to start to control my RA? What will physical therapy be like? Will the doctors treat me like a person, and not like another case needing to be solved? All of these questions are bouncing around in my head making me crazy. Well, I suppose I will know soon enough. Nothing is going to stop me from reaching my goals. I have to make this happen for me and most importantly my family.

A Day in My Life

I have a lot of people ask me what it is like being me. I always laugh, and kind of make a joke about how I get to lounge around in my PJs all day and watch TV. Honestly, that couldn't be farther from the truth. I do spend a lot of time in bed, but a lot of people don't understand that being sick is a full time job. It's a job, only you don't get paid, and you NEVER get to take a break from it. This job is 24 hours a day, 7 days a week, and you are basically a slave to your own body.

So, I will share my daily duties with you all, but please keep in mind that I want to be truthful. I am not doing this for pity, or sympathy. I simply want to bring awareness to my disease to educate people about RA, and let other RA patients know they are not alone in this fight. So, with that said, here is a typical day for me.

4:00 am.- I wake up. I make my first little movement in the bed. I usually move my arms first then my legs. By doing this, I can usually tell what kind of day I am going to have. If I feel immediate pain, I know my day will be tough and painful. If I can move a little and just feel a little pain and stiffness, then I know it will be a bearable day. Afterwards I get up to to use the restroom, and take my first set of Meds. (prednisone which is a steroid that helps control my swelling and pain, and also a pain med for obvious reasons) This is a quiet time for me. I take advantage of that moment to check Muffin on the baby monitor and say my morning prayer. I ask Heavenly Father to help me and give me strength and patience throughout the day and also keep my family happy and safe. Then I prop my knees up with my wedge pillow, get comfy and go back to sleep.

8:00ish - 10:00ish- I wake up for the day. Depending on when J has to work is when I wake up. If he works later in the day, I sleep longer. I usually sleep in as long as I can in the morning because it is really hard for me to get to sleep at night. I frequently have muscle spasms and achy joints at the end of the day that makes sleeping hard.

I get up and scoot myself to the edge of the bed, and on to my rolling office stool. Then I roll myself to the restroom. After my business is done, I roll myself back to my room, and scoot back on to the bed. Then I take my second set of pills. (Pain Med, a Vitamin, and Plaquinil which is another med to keep my RA from doing more damage to my joints) then my wonderful mom gets me breakfast. I have to eat with my Meds. or I get sick.

For the remainder of the morning I do things like play with Muffin if J went to work, check my email, Facebook, and Instagram. If I am feeling good that day I might do some coloring or an art project with Muffin or work on a craft. I have to be very careful about what I do because I get tired really quickly. I'd say playing with Muffin is probably the hardest thing for me to do, and gets me tired real quick. So we usually play for 15 min at a time then take a break. She knows mommy needs to rest, and is really good about knowing my limits. I hate that she has to deal with a sick mommy with limits. This makes me emotional a lot, but I hide it pretty good until I use the restroom, and can cry about it in private. I never want her to see me cry.

1:00pm. I eat lunch. Lunch can be tricky based on the day. Most of the time J or my mom bring me lunch, and that is really nice. If they are both working then I get my own lunch. So on day like that I scoot on my office stool and roll out to the kitchen. I have to be super strategic when rolling around the kitchen. I try to only visit one section of the kitchen once. For example. If I am making a sandwich I roll to the cupboard and get a plate, cup,silverware, and napkin all at once. Then move to the fridge etc. it gets hard when I have to get things for myself and Muffin. Thankfully she is getting old enough to help me get things when I need her to, and carry the meals back to the bedroom.
We usually eat all together in my bed since that is where I am most comfortable. If I am sitting in a chair too long I start go get a lot of pain in my knees, and its also hard for me to sit and get up from a chair if its not the right height. So, the bed is just easier. We have become really good at eating in bed though. It has become a system.

For the remainder of the late afternoon, I will do more of the same as the morning. On good days, I have loved making hair bows for muffin. That is one of my favorite things lately, but I only get to do it when my hands aren't stiff which isn't too often. So, on days that they are stiff, I like to look up tutorials of crafty things on YouTube. I usually play with muffin too. We either play dolls, or My Little Ponies, or what ever toy she is excited about that day.

6:00ish- We eat dinner. That's the same as before. J usually makes it if he's home. I take my next round of pills (usually a pain med if I need it that day) Then we will watch TV together or play games. Muffin usually cons J into playing in her room since she is sick of being in mine all day. J is really good to pitch in and play with her until bedtime.

8:00- Muffin goes to bed. J gets her a sippy of her preferred beverage that night. I use the restroom again since my chair is loud, and I don't want to keep her from sleeping. I go back to bed. We do this funny little ritual that gets Muffin excited about bed. She lays in our bed next to me, and we pretend she is a Crabby Patty on the grill (she loves Spongebob). J is Spongebob and he uses his spatulas (his hands) to scoop her up,  and flip her over. My job is to check and see if she is "sizzly" and hot enough to flip. So I "sizzle" her and act like she burned me she was so ready to flip, then J flips her. The more "sizzly" she is the more ready she is for bed. J usually flips her about three times. Then he scoops her up in her blanket (which we pretend is her bun) and takes her to bed quickly so he won't get burned by her sizzle. He tucks her in bed, then I turn on the baby monitor. We got a monitor where you can push a button and talk to your child in their room. So I usually talk to her and tell her a story and she asks me hum "Twinkle Twinkle Little Star" until she falls asleep. I do, and I love it.

8:00 and on- J and I usually watch some TV together or talk. This is one of my favorite parts of the day. J tells me about his day, what it's like out there in the real world, and we just enjoy each other. It's super peaceful and I love spending time with my best friend.

J usually goes to sleep first. So we turn off the TV and I just do stuff on my iPad until my body is relaxed enough for me to fall asleep. I use the restroom once more doing the whole thing with the office stool and trying my hardest to be quiet. Then come back to bed and take my last round of Meds. (Benedryl for allergies, and a pain med again if I need it). Then I go to sleep.

That is a typical day for me. It seems pretty basic, but I do a lot of those things while dealing with constant pain. A lot of people say that I am so positive, and I try to be. I have my ups and downs. Lately I have been able to stay relatively chipper. I do have to admit though that I probably cry in private at least once or twice a day. At first I thought there was something wrong with me, but now I really think it is okay to cry, and be sad. It is important to let yourself feel things. What is important is that after you are done crying, you pick yourself up, say a little prayer, and move on. A big part of staying happy is accepting my situation, and being realistic and truthful with myself. If I put myself in a situation where I am doing more than what my body will allow me to do, then I'm only setting myself up to fail. I am not saying that I just give up, and not try. I am just saying I try to be realistic about my abilities and limits. I almost need to listen to my mind and body separately since my mind will say one thing, and my body another. This is where the frustration comes from. My mind will say, " I want to do that!!!". And my body will say," NOPE!" And my body will always win. So to keep my mind happy, I sometimes have to cry a little to blow off some steam. Afterwards I try to put a smile on my face, and stay thankful for the blessings I DO have because let's face it, things can always get worse right?

Friday, June 14, 2013

Absolutely Positively Fed Up

Just to inform you dear reader, this post is going to be nothing but a huge rant. This morning I called RX Crossroads pharmacy to get my Enbrel shot prescription refilled. After waiting on the phone for what seemed like forever, I finally got to speak to a representative. She told me she could not refill my prescription. So, she connected me to The Encourage Foundation who kindly pays for my prescription because I can not afford a thousand dollar shot every week. So I get on with this woman who explains to me that my application has been temporarily discontinued because they want me to apply for Medicaid and basically prove that I am denied coverage from them. This is the part that makes me FURIOUS!!!!!!!! They took away my coverage, and didn't notify me AT ALL! They "said" they sent me a letter in the mail informing me of the change in my application, but they DID NOT. I have NEVER received anything from this Encourage Foundation. I never even got anything when I was approved for a year of coverage when I applied this last November. I had to call them and ask if I was approved after waiting a month only to find out I had been approved two weeks prior to me calling. J checks the mail EVERYDAY and we are super organized. We keep everything that has to deal with my health in a folder. It just makes me so mad that they can approve me for a year and then take it away just like that. I mean I need that medication. I just don't understand why a "Foundation" who is supposed to be helping people like me, goes out of their way to make life a living hell.

On the other hand, I am very thankful for the opportunity that I have to get my shot paid for. I don't want to come off like I am not grateful because I am. I just hate it when you get on the phone with these people and they treat you like a liar. This whole experience with Medicaid, Disability, The Encourage Foundation, and the "Doctor" I saw for Disability, have really been heart breaking for me. In my experience, talking and dealing with these people, I have found to be treated like I'm a free loader, liar, and trying to get something for nothing. It really cuts me to the core because I am NOT one of those people. There are people out there that want to abuse the system, and are liars out to get anything for nothing. It really ruins things for people like me who really genuinely and desperately need help. I never thought I'd be someone who would need to beg. If I could go to work and hold a job like a normal person I would be so happy! I would give ANYTHING to be a normal functional person. There is not one little ounce of me that wants to be sick, and I don't think these organizations realize that. I am so sick of being treated like a common criminal. It is really eating me alive. I am really hurt, and it is hard to be constantly beaten down and analyzed at every turn. Oh how I wish I wasn't sick! I HATE jumping through ridiculous hoops!

Tuesday, June 4, 2013

RA Tip Tuesday

When you have an autoimmune disease like RA, you learn to adapt to new and easier ways of doing things. For each person these ways are a little different. Here are some things that have helped me:

1. The Pampered Chef Jar Opener
     This nice little tool was introduced to me by a family friend, and my goodness is it helpful! I use it to open every jar, and even the milk jug. It has these tiny little teeth on either side that can pretty much grab any kind of lid. The best part is its only $11.50! I can't live with out this one!


2. Office Max Medical Stool
       This stool is a little on the expensive side, but for me it has been money very well spent. It costs about $100, and J got it online from Office Max. I need both of my knees replaced, and can't walk at all. The doorways in my house are too narrow for the wheelchair to fit. So, J bought me this stool to scoot around the house with. Even if you can walk, this is super helpful, and can save anyone with RA some energy. Use it in the kitchen to rest while cooking, or in the laundry room to sit while folding laundry. This stool is made very well and sturdy. I know I will contunue to use it even after my surgeries!



The 5 Stages of Grief

I had to take a week off from posting. I've gone through every emotion a person could have in the last week. I found it kind of funny that I can't physically get on a roller coaster, but I cant seem to get off this emotional one. Do you know the 5 stages of grief? They are denial, anger, bargaining, depression, and acceptance. When I was first diagnosed, I knew I'd go through these stages, but I had no idea It would be a constant cycle. I never went through the stages only once. I have found that once I get to accept of the roll RA plays in my life, something else traumatic happens. I then get the joy of starting the whole cycle all over again.

 A few weeks ago, we got a letter in the mail from SSDisability. We have already jumped through every hoop. (Or so we thought) It stated that they wanted me to go see one of their doctors for a physical exam and blood work. I rolled my eyes, but I was fine with it. I don't have anything to hide. So, this last week was my appointment. On the way to the doctor I thought my heart was going to jump right out of my chest. No one could understand why I was so nervous. I didn't mind being examined, but this doctor's opinion on my health was going to make a huge impact on the decision of my case. It was hard to trust that he was going to report the truth. So, J and I got there and went into this big southwestern pink building. When we walked in, there was a small waiting room. The place was neat, but dusty. It smelled like yesterday's lunch. It was a pretty small office, and hard for J to maneuver my wheelchair around corners and hallways. The nurse called me back. She was nice enough, but was quick and short with us. First she checked my eyes. It was hard to understand her thick accent. I couldn't understand her questions. Then she wanted to check my blood pressure. She grabbed my arm and started twisting it so my palm would face up. I started to tear up since my RA wouldn't allow my arm to turn the way she wanted it to. She took my blood pressure 4 times, and commented on how high it was. (I wonder why. My heart was beating so quickly!) Then she asked about my work history. She wanted dates and names. I was still choking back tears. The whole thing seemed like an interrogation. She had us wait until the doctor was ready to call us into the exam room. As we were waiting, J and I had a chance to observe our surroundings. The room we were in had furniture circled and lined up against all 4 walls. There were stacks of green SSD papers all over the room. It was dusty, and looked and smelled like a thrift store. Every piece of furniture (even the medical equipment) looked like it came from a garbage dump. I'm all for trash to treasure, but I find it hard to trust a doctor who doesn't take pride in his office. I would expect a doctor's office to be clean and sanitary. I started noticing the diplomas on the wall that belonged to this doctor. My fast beating heart sunk into my stomach. Under this man's name it said "Medical Examiner" on all of the diplomas. I took a second look at his name. I noticed there was no "M.D". Then I found out that the guy wasn't a doctor. He was just someone hired to examine me, and determine whether or not I was disabled. Now, I am not trying to be cruel, and say he wasn't smart or qualified to do his job. However, autoimmune diseases are tricky. Even a specialist like a Rheumatologist can sometimes be stumped. How was this man going to make an educated decision if he wasn't familiar with my disease? So, the "doctor" called us in. He started off by arrogantly asking me in a very strong accent that I could hardly understand,"So, what is your problem?". With tears in my eyes I started telling him about my RA, what joints hurt, what I can and can not do etc. Then he asked me to move my legs this way and that way. Afterwards he moved on to my arms, neck, feet, hands, etc. the whole time acting like he was trying to catch me in a lie. He looked at my knee and hand X-rays as well. He tossed a dirty cut up piece of fabric with buttons on the exam table, and asked me to button it. It was difficult for me, but I was able to button one of the buttons before he ripped it out of my hands, and tossed a old white baby shoe on the table. "Tie it.", he said. I couldn't choke back the tears. One tear fell down my cheek though he hardly noticed. I took the shoe, and struggled a minute, but I managed to tie a very loose bow. Next he put an empty jar of mayonnaise on the table. "Open it.",he said as he was writing on his little worksheet. That's when I lost it a bit. I looked at that jar knowing I would not be able to open it. At home I have a tool that helps me with things like that. Tears ran down my face as I struggled to turn the lid. It hurt so bad, and I couldn't do it. So, he took it away, and didn't say a word or look at me at all as he wrote notes. Next he looked up and asked,"Can I get you to get up on the exam table?" I was SHOCKED. After looking at those X-rays, any doctor would know I would not be climbing up on anything. So, I thought to myself... Okay Guy, you want to see me climb up there? I'll let you see what I hide from everyone. I asked J to help me stand up. We usually count to three when I stand up. It helps me prepare for the pain. "One,... Two,... THREE!" we exclaimed together. Up I went, and was half standing. I immediately felt the familiar, excruciating, and grinding pain in my knees. I let out the loudest, most heart wrenching shout of pain I think he had ever heard. I started to cry uncontrollably. This was NOT a show. I saw in his eyes that he knew I was for real. He simply and quietly said, "Sit her down." I continued to sob for another minute as the pain slowly faded to a pulsing heartbeat in my knees. After that I started crying for a whole other reason. I had been completely humiliated. In that very moment, I finally realized how desperate I was for someone...anyone's help. I was disabled, broken, and it was the first time in a long time I saw myself that way. All in one single little minute, I found myself at the beginning of my "grief cycle". The whole week I've been going through all of the emotions again. Denial, anger, bargaining, depression... And Im not quite back to...ACCEPTANCE. (but I'm working on it!)

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.

Saturday, December 22, 2012

All I Want for Christmas

(Sing to "All I want for Christmas is my Two Front Teeth")

All all I want for Christmas
is just two good knees
Two good knees
oh just two good knees!
All I want for Christmas
Is just two good knees
so I can have
A Merry Christmas!


So, I just recently found out that I need BOTH of my knees replaced. Yep! No cartilage in my left knee, and almost none in my right. This explains the grinding pain I've had for a while and why I've needed the help of crutches and a wheelchair to get around. Crutches are super annoying. However, I find them useful for gathering Muffin's toys in the living room from my chair. They reach quite a distance. The wheelchair is something that Muffin thinks is really fun to ride. I am thankful for things like crutches and wheelchairs to help me, but I miss being able to walk and doing things on my own. My surgery is far in the future since I don't have insurance, and last time I checked... We were poor. Aahhhhhhh. So life my life. Since I'm pretty sure Santa doesn't give knee replacements, I guess I'll just HOBBLE along all the while counting my blessings!








Wednesday, December 12, 2012

Stop and Smell the Cookies!

Having RA has definitely taught me how to adjust my life. Today there were so many things I had to get done. I had piles of laundry that needed to get done, trash that needed to be taken out, groceries that needed to be bought, but I have such a hard time doing all these things by myself. So, since J was at work I thought I should do something fun with my daughter "Muffin". It's Christmas time, and this year I vowed to do all things Christmasy. So, I decided to bake COOKIES! Baking is something that I never really enjoyed pre-RA, but now I love it because it's something that my daughter and I can do together while I am sitting. Standing for a long time is really hard for me to do. So, I sat in the office chair that has wheels and wheeled around the kitchen baking Toll House cookies the whole afternoon. Muffin LOVES the mommy time and I love seeing her face when the oven bell tells us the cookies are done. Adjusting is something that I had to accept. I think the first year after my diagnosis I was in serious denial about how life for my family and I would change. I remember one time in particular I decided I was going to clean out the refrigerator. I was bound and determined to get this job done no matter how much it hurt. Cut to 15 minutes later...there I was sitting on a bench crying out of frustration that I was too tired to finish. As I sat there in the kitchen I realized. Things had to change. I was going to have to tweak the way I went about doing things. So, I started waiting until late afternoon to do chores. I also would sit and rest every half hour or so for ten to fifteen minutes. It took me forever to get things done, but at least I was able to feel like I accomplished something! I'm two years into having RA, and I'd have to say I still have my days. I still need a lot of help, but I have found my balance. If you have to give up things you used to be able to do; rest assured that after you have a good cry... there are other things that you can find joy in doing. Like waiting for the oven bell to ring... "ding!"