End of a Year

It is pouring rain outside and for the United States (East Coast) 2013 is less than 50 minutes away. Here in the Central states we will soon follow an hour after that….wow yes 2013 is knocking at the door! What a year 2012 has been! I cannot help but think about all the things that this year has brought!

Some of the major blessings of this year include:

* I finished my first YEAR of my Ed.D with a 4.0GPA! That to me is unbelievable, completing a doctorate is hard enough for a “normally healthy” individual much less a person who fights RA/Lupus/Fibro and for this whole year was off treatment! That to me is a miracle!

* I found some of my closest friends this year and I have used my unlimited text messages 😛 Whether my friends are in PA or right down the road, I have found some precious gems. Their sincerity and genuineness has been a God send this year, I am so thankful this year!

*This time last year I was wrought with heart ache and sorrow of having experienced one of the deepest hurts I have felt in life. I made choices then that I knew would impact my life greatly. But I made a choice to do what I knew was right not what I knew sounded better. I learned that I valued integrity above money, above friends, above a job…I guess above everything. A blessing through that major trial last year (while I did not know it then) was  that now I realize how much I grew! I realize that I am stronger now, more mature now and if faced with the same painful decision, I would do it again. Why? Because I saw, that God blesses through the storms and that God has a plan. I might not (and probably won’t) know why or how…but things will work out

* I passed through another year of living with my RA and I am still here today fighting just as hard as last year! That to me is a blessings. Yes there were many times this year where I was so hurt and felt alone. I was tired of people’s failing to check in, people failing to have words to say to me so they said nothing at all. I was hurt many times this year by people seeming to be uncaring or thoughtless. But then now that I think about it….I grew so much in my knowledge of myself and this disease. You know what (and this can just be me) but to “win” with this disease we have to know ourselves and how we function with this disease…alone and with people. The journey of knowing how we function with Rheumatoid Arthritis/Lupus/Fibromylagia alone is painful, scary and depressing but when we can know that…we learn how much we value the FEW (yes the FEW) people who WANT to walk that journey with us.

* I celebrated a 3rd year of marriage! We made it three years! 🙂 My husband and I faced this dx not even 6 months after our marriage….imagine being a newlywed and hearing the news. The news that your body will be wracked with pain, crippling pain. That it WILL NOT be cured, that it WILL BE life-altering. That yes there is medicine but (and those of you on it the meds know) the medicine is horrible for you, causing a limitless amount of side effects and damage to major organs/skin/etc. I know if I was outside looking in and I read one pamphlet about my medicine and I did not have to take it….gosh I would read the paper and go HECK NO! But me..my choice is I take it and suffer the side effects or do not take it and suffer even more excruciating pain…what a choice right!

There have been MANY more positives but those are some that come to mind right away. Yet with positives are hardships too….

*Disconnected is the word that come to mind. I am a doctoral student and when I am in semester….life has one focus…STUDYING/RESEARCHING! I feel so disconnected from friends who get very tired of my cancelling or never going to anything. I get tired of little to no sleep and little to no rest. But I keep telling myself despite this SACRIFICE to my life, my marriage, and friends…this will be worth it!

*Insincerity! I have grown so very very very tired of the insincere people that I gross paths with on a regular basis. I have grown so tired this year of people who have to ask the same hurtful questions every time I see them – “how are you feeling???”, or “you look great today are you feeling better.” The answer DOES NOT CHANGE, I am always in pain…it does not help me to have you ask me about it every time you see me! I have grown so painfully tired of people who feign concern but NEVER check on how I am doing. People who when you talk to them seem so concerned but yet cannot find time in their busy busy day to text/email/tweet/facebook/etc. to see how I am doing. I know you might not know what to say, or grow tired of hearing the same answer (then don’t ask). If you don’t care about me that’s fine, if you don’t know what to say that is fine….but come out to my face and say it. I have grown VERY tired of insincere people.

—–I will say though that I have realize how hard it is to care about and for someone who is chronically/painfully ill. It takes a lot of patience and work on both parties part. I get that and I hope it does not sound mean to say what I have said. I do not mean it in a mean way…but sometimes I think we hesitate to say things and we wish later I had…I guess 2013 is my year to say things! 🙂

* I have grown tired of my pain! I have grown tired of every day waking up in pain from the moment my eyes open until the moment my eyes close. The constant pain when I try to open a coke bottle, sit down, drive, get dressed, put makeup on etc. Everything shows me how old my body feels and how much pain I have in life. The pain is tiring!

—–That said I have learned the true help to me writing it has been to journal about this life of pain. It helps me to share that yes I have ups and downs but still I am getting things done in life. I am still achieving my dreams!

 

As you can see there has been much that has gone in this year of 2012! Good, bad, positive and negative. It has been a memorable year…and I am thankful for all things I have experienced. I look forward to 2013 with many positive thoughts!

 

I look forward to hopefully finding a connection at my church, to completing a second year in my doctoral program (my almost last year of coursework), and  to growing with my cohort through this year. I am excited to see where I can serve, the people I will meet, the new friends I will make and the old friends that will become even more like my family. I look forward to hopefully seeing research come one step closer to a cure for our invisible illness! I look forward to hopefully getting adjusted to my Arava and Lyrica so that I am not so exhausted and sick….or that I can at least get stuff done despite being exhausted and sick!

So much more but I will end here for tonight! To all I wish a Happy New Year, a wonderful and blessed 2013! May we all make positive changes this year and through our journeys touch the life of someone else!

Goodbye 2012 and Hello 2013!

Molly

Sooooo as promised, here is the newest addition to our family. She was abandoned on the side of the road some 7 weeks ago. One of the martial arts friends my husband has was trying to get her a good home for Christmas. We had been wanting a dog and missing our old dog terribly but I had not expected to get a dog this quick. After thinking about it for a bit we decided that we would give Molly a try!

She is between 2-3 years old and weights 9 pounds. So she is full grown and pretty much between a toy and small dog. She is currently sunbathing on the floor very lethargic from her shots yesterday. I’m hoping she helps me stay more active and also perhaps in some way helps my pain (haven’t checked on studies about this but it would be cool).

She spent the first night curled under the covers with us! Kept my legs soooo warm! 🙂 she bunched around following me wherever I went. She loved curling up next to me or playing with her toys. She wakes up at 4:20 on the dot which is not too bad because I need to start getting up by 5:20am for work. This morning we got up (in the 30 degree weather) and went potty and then for a shirt brisk walk. I quickly realized she needed a sweater so we went back home. We are getting used to having an older dog and not a puppy but it will take some time. We are learning more of how she thinks and what she wants.

And the good news is since she is sooooo small, the cats are not really intimidated! Last night we had one cat on the couch and Molly too! It will take some time I think for them to become friends but at least they don’t hate each other!

Last positive, Molly did well in the laundry room last night when we left! She did not tear up stuff or potty! We hope she keeps up this trend!!!!

More pictures to come, she will hopefully feel better tomorrow. Vet said her shots will probably effect her and sadly the vet wasn’t wrong : ( hard to see her not in her perkyiness!

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Resting

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.

Back to bed I go 🙂

 

 

Yes!

One thought came to mind tonight, say “yes” to moving your body! Even if it is just from bed to the couch. I have realized that movement is critical to our lifestyle! Of course me this weekend, I moved a bit tooooo much! I walked probably some 20 blocks or more…..not a smart move! Take breaks and enjoy just sitting and people watching! 🙂

My Fibro and RA is better though when I move! Even if I spend all day in bed…..just crawling out to my couch….relieves some of that stiffness. Stiffness gets worse (at least for me) the longer I do not move. It could just be me but a second New Years resolution is to move! To say yes to moving!

It doesn’t mean a gym membership…it means doing what I can! Be that a walk around the neighborhood or just crawling to the couch! I hope to take advantage of the days I can do something, heck maybe even lose some weight! 🙂

Off to bed…again Merry Christmas!

Stopping!

Merry Christmas! I hope today was a good day for you, hopefully a day you celebrated with your friends and family! We (my husband and I) did not! For many different reasons we do not celebrate the holidays in the traditional way. Thanksgiving for us normally entails whatever we can find to eat – pizza, Whataburger, etc. I actually cannot remember the last time we were with family for Thanksgiving. One reason I guess is because Thanksgiving was not really a holiday that I grew up celebrating in Honduras but also because neither my family or my husbands family are close. And for that reason when it comes to Christmas we tend to do our own thing – one year we were in Jamaica, one year we were in Orlando, and this year we are in New Orleans. I do not decorate, actually have not decorated since 2007, and that was the first and last year since I left home at 16. Counselors I am sure we can have many conversations but despite our way, we do hope that our friends and family had a great day! The cool thing about Facebook is that you can see all the fun pictures and read the cool stories – from engagements to baby announcements….wow life goes on!

But how are you? How am I? I hope that your pain is not as bad as mine! On a scale of 1 to 5, I am abut 3.5-4. Exhaustion/fatigue has been intense. I was rubbing my leg and it felt like needles was pushing on my skin, thank you Fibro lol! Holidays and pain, really don’t go hand in hand but the good thing is we can still have fun! We can still travel! I am very thankful that this year I was able to make the trip! I know one year I might not be able to make it :(.

One of my final contemplations for the night are the many new year resolutions. Yes it is that time of year again, we think about things we want to change and do better next year! What do I want to change or do better?

I want to be more of an advocate, living with RA and Fibro does not mean my world ends….it just means my world changes. It means that I need support such as Fibro groups (check my sidebar) or RA support groups (like http://squeakyj.com/). The days will be sooo hard, some days I cannot even get out of bed. The meds will (at least for me) kick my behind…but I still drag myself up to do something! Everyone will have a different story….their story…but the cool thing is we have each other. You can share your story and I can share my story. Through our pain we can help someone else! That is one of my new year resolutions!

Alas my contemplative brain is tired….more soon….Merry Christmas! Feliz Navidad! Have a blessed night!!!!