A time for everything

I knew today was going to be tough. I prepared mentally for it all week. Snacks to make for soccer, soccer game, team lunch, my daughters Nutcracker practice, our grandson's birthday party, getting kids to different locations, dinner, trick or treating them sleep over preparations for my daughter. I knew by evening I would be exhausted. I also knew that I would have Sunday to recuperate. So far I am surviving. Of course tonight is a night of fitfull sleep - hence 2am blogging. 

I have been really trying to focus more on my health, limits, and spending as much quality time with my children as possible. My children are my blessings God gave me to watch and protect. Everything I do and chose is for them. I chose to push my limits today so that each child had something special for them. I love being a mom. 

For the longest time I had trouble saying "no" to people. Whether it was for coffee, to help someone, volunteer somewhere, or join something, I felt like I had to say yes. Now I say no when I need to. God has shown me it is ok to say no. Boundaries are crucial. I can't let others dictate my choices. I have always worried what others thought of me. I felt like I had to prove to others I was a loving wife, a patient mom, an understanding friend, etc. Over the last few years I have seen how damaging these thoughts have been to me mentally and physically. I am not here to be perfect. I am only here to be the woman God created me to be. This means I can say no to others. Including my kids. Just tonight we were going to take Phia and her friend to the movie. But my husband and I knew it was too much for our exhausted daughter. So we said no. I also knew it was going to be too much for me. 

Sometimes I need to say yes. This can be a tough one. Most people are genuinely helpers. So why is it so hard to accept help? For me I tried to hide my illness. Or I blow it off as "I'm doing well." When in fact I can't even wash dishes or fold laundry. So I am learning to ask and accept help. I have to remember that God calls people to serve so who am to question their offers to serve us?

Will you pray for me to learn to say no and yes when I should? Pray I quit worrying about letting people down. Or obsessing about if someone is mad at me or disappointed in my choices? Pray I seek Gods direction?

Thank you Jesus for being my rock, my shelter and my refuge. I confess I am scared and hurt by people's reactions to me in the choices I make. I confess I overdo it. I confess I need help. Thank you Jesus!

Fatigue and Brain Fog - They exist!

For the last year, my RA has progressively gotten worse. I have been on all the drugs possible. Most work for a couple of years, and then stop. So now I wait for the next new drug to hit the shelves – hopefully soon. This time it isn’t as much the joints that is giving me the problem, as it is the brain fog and fatigue. Everything I do wears me out. It’s like the video games where your player loses energy as you get shot at or punched at. I lose energy because I did the dishes, or I showered, or I walked downstairs to get the laundry (this is a killer for me). Every night I mentally prepare my body and brain for what needs to be done the next day. Before I get up every morning I have already, in my mind, packed my lunch, prepared dinner, planned my shower (hair washing day or not), and calculate if I can get the dishes put away. This is not a controlling attitude, this is the only way I can get myself ready to face the day. By the time I get in the car to drop my daughter off at school and drive 30 minutes to work, my energy bar is half way used up. Thankfully I have a 30 min commute. During that time I listen to books on tape. The rest boosts my energy up a little bit. Some days I get to park a few blocks away from work. Other days, I park in handicap parking near my office. Please don’t judge me on the days I park by the office (this is a whole other post). Some days I park farther away feeling great in the morning and realizing later that was a mistake. Or some days I park close to work, and by lunch I am up for a walk. A year ago I used to jog 2-3 miles during my lunch hour. This year, I don’t. I love my job. It is so fun and so rewarding. I hate that some days it is hard for me to work – not because of the job, but because my body isn’t cooperating. It is so frustrating. By the time work is over, I am typically down to about 25%. If I had a lot of activity I could be borrowing energy from the next day just to drive home. Then once I get home I typically have dishes to do, kids to round up for bed and general straightening of the house if I can. I love having a clean kitchen when I go to bed. Lately that doesn’t always happen. I am so blessed to have a husband that can cook dinner. Every week I plan our menu, but many times he has to cook the meals I planned. Whether it is schedule or RA, he does it for me. I love that guy. The hardest part of the fatigue for me is that it is invisible. You can look at me and I seem ok. The best way to describe fatigue is the exhaustion you feel when you have the flu.

So, have you ever walked into a room and wondered what it is you were there for? Most people have. It’s frustrating. So you walk out to try to “reenact” the event by walking back in. Sometimes it comes to you, sometimes not until hours later. For many rheumatoid arthritis sufferers, this is a common occurrence. We call it brain fog. I know there are people out there who don’t believe it exists, or that we are over exaggerating. We are not. It is real. It does exist. Part of my RA, as I mentioned above, is brain fog. It has progressively gotten worse. For a while I could hide it from others. In the last couple of months it has impacted every aspect of my life. For whatever reason I am not forming short term memories on many occasions. My children or my husband will tell me something and I have no recollection of the conversation. None at all. At work I struggle remembering simple words while I type or converse with co-workers. One day I couldn’t remember the name clip board. I kept saying “You know that holder that has a clip and it holds papers. Like a board with a clip?” It took me 5 minutes to remember what it is called. It scares me to think I could get worse. My Grandma Mabel had Alzheimer’s for over 15 years. She did great for most of those years, but it got really bad in the end. I am afraid I am already getting it, or this is irreversible. I try to keep lists everywhere I go, but if I don’t write it down right away I lose the memory. Most of the time never returning. I can’t imagine how frustrating it is for my kids and my husband. He is such a trooper being patient with me.

Through all of this I wonder if I will ever get better. I have hopeful days and I have down days. Overall, I know I can trust that God knows each day and what it will offer. I trust He is my ultimate Healer. He has gotten me this far in my journey, I know He won’t stop know. As I read scripture, pray and study His word, I am reminded of His love, mercy, and grace He gives me. He really is all I need. I lean on Him. Abide in Him. Trust in Him.

My hope in writing is to educate those who don’t know what RA is or what it can do to a person. I also hope to show those suffering from RA or other chronic illnesses that you are not alone. That we all are in this together. I have had this disease for over 20 years. Only in the last few years (one perk of technology) have I been able to reach out to others and join groups. It has helped me tremendously no feel so alone in the fight. So today I confess I hate brain fog and low energy, but I know that God is bigger than that and someday I will be released from all the pain, loss, and problems from my RA.

Ugh - Am I really alone in this?

For the last couple of months I could feel that my energy and life outlook was changing. I didn't want to admit it, but the pain was getting worse. I couldn't run like I used to, I was getting more and more tired, I began snapping at my family and my depression was getting worse. After living with this stupid disease for 20 years I am just sick of it. I am sick of "looking normal" but feeling like I was run over by a semi-truck. I am tired of explaining what it means when I have a flare. I am tired of taking medicine for the disease and medicine for the medicines' side effects. I am scared of where I will be in another 20 years. A wheel chair most days anymore sounds like a dream. I have lost the joy of jogging and walking. It just isn't worth the pain anymore. I tired of feeling like just packing my lunch for work is like climbing Mt. Everest.

I want normal for my life. I want to not have to tell my daughter that she can't sit on my lap because it is too painful. I want to come home and have the energy to engage with my family. I want to come home and not freak out on my kids because the dishes weren't done. I want my children to live a "normal" life without having to do more than their age requires. Having a mother with an autoimmune disease makes them grow-up quicker than they should. I have to ask my 9 year to open jars because I can't. I am tired of feeling lazy or like a bad mom because I "just can't do this".

There is just so much wrong in my life right now, yet there is so much that is right! I have a home, a car, a job. I have an amazing husband, awesome kids, adorable grandkids. I have a great group of friends. Most importantly I have a God who looks past my complaints and comforts me where I am. Living with a chronic disease/illness sucks. On this earth, it never ends. I am glad to know that when I go home to my true home there won't be rheumatoid arthritis, or diabetes, or Lupus, or heart failure or HIV or any other disease. We will be healed and full of love and joy. Today, I pray, for a glimpse of that joy and peace in my life. A moment of pain free living - even if just for a moment.

When you see someone get out of a car with a handicap sticker - don't judge them. When you see someone with a service dog, respect them. We don't always know what is going on with other people. All we know is we all have our own struggles and we need to be compassionate to all! When you don't see my name on a volunteer list or even see me at all, understand that I just can't at that time. I want to volunteer for EVERYTHING, but I have learned over the years that my body cannot do as much volunteer work. It is so hard being humble and asking for help! I want to do all of it on my own. I don't like feeling helpless in life. I don't want my kids to remember their childhood as mom never doing anything. So, give grace to me. Give grace to others like me. We may look like we are all together, but most likely we aren't.

Unless you have gone through what we are going through, try to refrain from "advice". We know all about the new diets, the no gluten, no dairy, no meat, no sugar, low carb, etc. diets. We have all googled things like "Rheumatoid Arthritis anti-inflamatory" or "vitamins to help with chronic pain" or other things. I know you are trying to be helpful, but it just reminds us of our pain. Instead offer meals, or help cleaning, or watching the kids or the best - prayer. We always need prayer. Pray for good days, for extra sleep, for us to be less reactive or for some peace and quiet. Honestly, don't tell us you know someone who knows someone who has RA. Obviously you know someone - me!

Thank you for reading my post today. If you are someone or knows someone who struggles with chronic or acute pain - remind them they are not alone!