Pain was horrible today…yet again I realized how hard it is to do things when your body feels run over. For a good portion of the morning I had brain fog…I struggled to keep awake. Not only that but I was working at home today so I was battling curling back up in my bed! Well good news the bed did not win but I am exhausted!! What is still keeping me up??? Yes you know it….PAIN! Then I was so tired and body hurt so much that I really did not get too much of my homework done. I updated my FB page’s cover (and that did take awhile) and then I just relaxed watching a good show on Netflix. I gave today all I could give, and that to me makes a good day.
I thought today…what would a day of no pain feel like…it has been so long since I have had one of those. My typical day consists of pain from the moment my eyes open until my eyes close. Granted the intensity of pain varies from an annoying ache that does not go away (this is in my hands, knees, hips, back, ankles, toes and fingers. And a little in my shoulder and elbows) to a stabbing pain that prevents me from moving. I picture a day when I can wake up in “remission” so that when I get up I am like I was before….normal. Where I can go and go and go and not get exhausted after putting on my makeup or getting dressed.
I realize now (don’t they say hindsight is 20/20) how selfishly I took for granted simply moving. I took for granted a pain free day and I wish I had not. I have so much more on my to do list that needs to get done!!! I need to go to the Asian continent and see my list of things, I have to go back to Africa to see more things and I have to travel Europe more!! I cannot have pain every day right….and then….I wake up and realize I was just picturing a day….that my life IS PAIN every day!
The pain varies from my RA and my Fibromyalgia. Although on a typical day both are hard at work making sure their unwanted invitation to my life is not forgotten!!! Who ever sent the invitation to these diseases….we must have words! I know now I would NEVER invite them to my life….these diseases don’t get the hint to LEAVE!
One positive..although it might seem like a small positive…is that I am adjusting ok to the Arava and Lyrica. Are the side effects gone…no by NO means! I am up for liver labs in March…I’m interested to see those tests. I am also hoping to have lowered my CRP and ANA. The meds are NOT great for my body, in fact they are horrible for my body…but they help…in their cruel way the meds help. So I am thankful tonight I have them….not too long ago I did not have them. And I know right now there are many who NEED them but still do not have them. Keep those people in your thought tonight. Say a prayer or send a positive thought that those people’s Fibromyalgia and/or RA is eased tonight!
Well tomorrow is the day, the bags are packed and the house is ready to be left for a few days. The girls I think know we are moving…but THANKFULLY the girls are getting used to their new home! We have a special surprise coming on the 27th if all goes well!! I cannot wait to share with you all…trust me there will be many pictures!
But anyways tomorrow we head to Nuevo Leans…aka New Orleans!! I have never been, so the camera is def. packed! I’m interested to see what the place will look like…especially post-Katrina. I know that might sound bad but so much happened there…I know from Hurricane Mitch in Honduras….years later things were still not back to “normal.” We shall see!
Today was a rough rough day! Major headache, tummy ache and just exhaustion. I have found myself getting dizzy…not sure if it is the Lyrica or just exhaustion from getting the meds in my system. Nonetheless I was in bed until 3:00p.m…..hoping tomorrow I feel better! Crossing fingers!
Off to bed…thank goodness the world DID NOT end ! Not that I thought it would be it was interesting to watch the world as this day came and now went!
One last thought before I sign off….let’s be thankful for our loved ones surrounding us! We do not need to list the many reasons why…this past weekend was just another tragedy that left me thankful for all my blessings and most importantly my family. No matter how bad I feel, no matter how little energy I have….I want to remember how thankful I am that tonight I was able to come home to my loving husband.
To many days I get up, drag myself through the day, use my spoons and wish I could steal some one elses’ and some how manage to paste a smile on my face. But I take for granted picking up the phone and calling my husband. I take for granted I will see him in the afternoon or many other scenarios. Honestly we have to remember we have no guaratnee..lets take advance of loving on our family/friends while we have them around. Take every day and remember what we have to be thankful for.
I’m thankful (despite my REALLY upset stomach) for all my meds, my doctors, and most importantly my hubby. He sees the pain, he sees the side effects and yet he is still here loving on me daily.
Enjoy a great evening, a restful night and hopefully a less painful day tomorrow!
I will have to say the word adjusting does not cover the first week being back on Arava! If you are on it or have been on it you probably know what I mean! The nausea, the bathroom issues and the major exhaustion! I also think my Lyrica is making me slightly dizzy although that is improving! I would pay money for my stomach to feel better! Gosh it does not (and has not) felt good since Tuesday!
Although my hubby and I had to go to his company’s Christmas party and it was one of those…if you did not eat anything..people would wonder. So I managed to eat a bit there…although maybe this is just me but I have tended to get cravings. I can go all day with out being hungry and then I’m like gosh I some ______ (red doritos etc.). Yes I am weird!
So you might be wondering…why complain if for about a year all you have asked for is meds!!! Yes this is true! I am 165% thankful for my medicine. I guess I am true to the saying “never happy, if you have curly hair you want straight…if you have straight you want curly.” Essentially yes I want my treatment SO BAD…mostly because I know that despite the bathroom issues/the nausea/the hair loss..it is WORTH it! I had some initial reports from my labs come back…my CRP one year after medicine is 25!!! Two years of treatment it was 3! So yes worth it!
BUT the medicine does suck!!! Anyone on it can tell you it sucks but it the trade me make! I know people who do not go on it, or go on it and realize hey no way man. You cannot fault them….either choice is a painful/tough decision…one where no matter the decision there will be pain!
And my last thought of the day was remember to look people in the eyes. Remember to LOOK at people! Maybe the person next to you is going through a similar journey! Maybe they just want someone to understand. I know I am ‘excited” (not really but yes I am) to find another squeaker/spoonie! Why?? Because we understand each other! That is soooo valuable!
Two more days and I am on vacation!! And then…a trip YAY!
Ya’ll definitely deserve an update! I am back on MEDS!!! Woohooo the bad part is I am back on Arava. This was what I was one for almost two years….I had a good bit of liver issues but it did help. I was also put on 300mg. of Lyrica (THANK GOD!!!). So now I have completed one day (and second dose) of Arava. I forgot the exhaustion, the nausea and the bathroom issues that come with the drug. I’m hoping after a few days this is more bearable…I forgot how miserable the meds could make me. But it was misery because of pain or misery because of meds….after having gone the miserable because of pain route…I decided to get off that train and go for meds!
But part of my day (since I was procrastinating packing) was to get my nails done! I love my salon…it was a perfect relaxer for today. So you can see below my designs I had put on my nails…they make me smile!! Also below you can see my crazy closet!! Gosh I did not realize I had that many shoes!! Finally you can see the two pills that keep me going..yet make me sick at the same time…what a mess BUT I am thankful I have a caring husband, friends and many more people to support me through this process.
This time of year, schools let out..jobs may close early…all because of the holiday known as Easter! While I am not into the Easter eggs, bunnies, candy etc. I thought my pastor put it so well this evening in service. For those of you, that hold onto the faith of the Lord Jesus Christ…Easter for us means HOPE! Hope for our eternal future and hope for the support of today!
While I won’t sit here and repeat his sermon…the cool thing for me as someone with RA is that…there is some hope in this world! That may seem like nothing to some but to me…having hope gets me off my couch some days!
Tonight I cannot help but think about the MASSIVE paper I have due, the three presentations I have to work on, the small projects I need to turn in and the MAJOR final I need to study for : (. At the same time I think I need to take this weekend and let my EXHAUSTED and PAINFUL body get used to the Arava and Lyrica again!
For me I hate sitting and doing nothing ….especially when I have so much to do! But at the same time…I also realize that I can get so much more done if I do take some time to rest! My papers get written better…when I make sure I take care of me!
So take care of you, think about the blessing of Easter and enjoy your weekend