Sadly, I am sitting on my couch today where I have been since about 1:00p.m. I went to be about 9:30p.m. and couldn’t drag myself out of bed until about 11:00a.m. Although I should get a star because I did manage to clean the bathroom before I realized I just did not have any energy today. That’s the thing that I miss the most…my “old” normal energy. The girl (yes still girl) that could get three hours of sleep and go almost all day long before feeling tired. That has been replaced by someone who takes about an hour to get up in the morning (that is just dressed/with makeup), and then another few hours to finally feel like my brain is awake! I’m much slower these days and thanks to med side effects I am doing even less.
Remember what I said about moving though, I did MOVE from my bed, through my house and then onto my couch . I am joined by my two precious kids (furry kids) who love to snuggle and sleep. Gosh I cannot look at them too long though before I want to sleep too! But Matt has class tonight and we get our final present of the year. I’m excited to share what that will be later tonight (or more than likely tomorrow).
I had a friend of mine tell me today….I don’t understand why you are taking…umm what are you taking again? It reminded me again of how hard it is for MANY people to attempt to put themselves in your shoes. And trust me I get it…why would I want to care about the world of RA/Lupus and Fibro if I was not living in it? Ummm I would not. I would not want to take the time to learn about the diseases, what they do, how to treat them, and the side effects…much less talk to people and really try and GET what their new “normal” lifestyle is like. Honestly once you get any of these diseases (and MANY more)…life changes! Life is NEVER the same again and life will NEVER be the same again. That fact alone is such a hard concept…throw in looking ok on the outside and wow…in many cases people do not know what to do!
Is it frustrating…yes very but I will say…the genuineness of a few people will make it all worth it. Find those few (and yes few) genuine people who are there for you. People who will listen, people who will pray with you, people who will be there when you need and not try to sell some new cure for you to try. People that will encourage you, people who will encourage your marriage (because a marriage with any illness is rough). People who will just be genuine supporters….gosh love on those people. Hold them close, cling to them. Those gems are few and far between!
Another of my NY resolutions….to be that genuine supporter to someone new. I know how much that person would make a difference in my life and in my family’s life. I pray that I can reach out there and touch someone in an incredible way this new year. Be that through this blog, my facebook page or through living in my new neighborhood.
Sometimes we try to take a small thing and make it into this huge project! We start cleaning off our dresser and it turns into a whole re-do the room project. Is that our human nature or just the nature of us Type A, OCD people? The one thing I have come to realize is sometimes things are just that….simple! Sometimes there does not need to be this HUGE answer to a small problem…sometimes a small answer is the best way to answer a small problem!
For me my small problem is my invisible disease, invisible because to the naked eye I look fine. And trust me I have learned to act fine! But inside there is so much pain, stress, and hurt (both emotional and physical). The emotional hurt comes because I do look fine and act fine…no one truly knows the daily pain I suffer. The physical pain is easily hid today and maybe tomorrow..but one day I will not be able to hid the physical pain. One day maybe I will be back in my wheel chair…if nothing else because of the fatigue… or maybe back on my cane. Sadly then maybe more people will understand the struggle of an invisible disease…when it becomes visible?
Sometimes the smallest simplest way to understand an invisible disease is to understand that just because someone looks fine…maybe they are not fine! Not a hard concept…it does not necessarily take a PHD to understand that concept…but for so many people…it seems like the hardest thing to do! It is so hard for so many to simply understand that ….just because we look fine…doesn’t mean we are fine!
Try and look deeper into people…try to understand that someone around you (with or without an invisible disease) is hurting. Maybe reach out to them, see how you can support them, encourage them and love on them. See how you can touch their lives and I pray and hope they do the same to you! It seems so simple but it is so necessary to just love on people and they love on you in return!
You never know how you might change a life, it may be just that simple!
Have you ever wondered why you do what you do? As I rested today (12hrs and then a 4hr nap) I could not help but wonder why I am back in school! If I did not have school I could practically sleep every day But then I cannot stop and wonder…what would I do with my life? I love the challenge of studying, the challenge of writing and being social in the education world!
I love going to work and I love being around people! I think staying at home and sleeping would get boring after awhile! BUT it takes energy and many days I do not have it!
I also thought today about how much RA has changed my life? Does it change your life or is it just me? For me, I rest more, sleep more, cry more, etc. etc. But aI also connect WAY more to people I may never have met before! That fact alone is awesome! It is awesome that there is good through having RA! It is amazing that I do not feel alone, instead I feel connected. I have a sounding board, emails of support and people that I know who understand me. In a word it is AMAZING!
I hope that Easter was a great weekend of rest, food and family! I am not ready for Monday but I promise I will smile as much as possible
I’m thankful! Why? Thanks to the “crappy” meds my stomach/digestive system has been messed up and that makes it hard to know what to eat. It also makes it hard to find food that doesn’t make you sick later. This problem makes it extremely difficult to buy food because it will look good in the store and then you go and eat it and it doesn’t settle well with you. Then you end up paying for eating it later. My tastes have so changed since my first dose of autoimmune suppressants.
But I am thankful for my husband who at 10:00p.m. will go out and find something that will settle in my stomach. That is giving! And loving! And for that I am so grateful! My pain tonight has been so intense..everything is hurting/everything feels broken. The exhaustion is intense…and to be honest I have not gotten much done.
This makes me incredibly thankful that I had worked hard over Spring Break…if I do not get much done tonight or tomorrow…I will still be ahead! SOO THANKFUL!
So yes tonight I am thankful! I am thankful for those who encourage me, thankful for my hubby who gets me food and thankful for all that I have in my life.
I updated my iPhone today! It is awesome, so many new things that my phone can do! LOVE IT!! Now my next dream is to update to the Iphone 4 …maybe for Christmas! Thanks to my amazing friend for letting me know to update!
It is sooo cool to have what feels like a mini-computer in your hand as a phone! I do not know if I could use a regular phone any more! I am so used to my Iphone or before that I had my blackberry! Both are awesome phones!
I will not be taking my Iphone to Africa, no worries there! I am too afraid of either losing it, it being stolen or it burning up when I try and charge it! It is worth too much, I will leave it in the USA!
Today was awesome also because I found a new group that I can maybe help out with on campus! I am excited to see what opportunities await me there! Also tomorrow I get to visit with my support group! I love going every Wednesday to get to know the ladies more, build relationships and get more insight in an area that I hope to work in one day.
Bible study was awesome tonight! I am sad that it will be ending soon! But the good news is that this frees me up to do a Grief Share program on Tuesday nights at my church. So I am excited to start that when I come home from Africa!
Last awesome thing for today is that I think I am going to do my graduation pictures this weekend! I know graduation (even though I did not get to officially go to it) was few months ago. I was wanting to wait until after the heat to get some good pictures!! So cross fingers for that!!
Also I think my diploma will be in tomorrow! I had to re-order it because it was officially lost in the mail . So the school overnighted it to me, EXCITING! I cannot wait to hang it on my wall!