I went for my 3 month appt with my rheumatologist. I was happy to see her especially because I have struggled with the Arava side effects. After a short discussion, she told she recommended seeing an additional specialist and she wanted me to stop taking Arava and move to Imuran.
I can say that appointment was not everything I wanted it to be. I walked away on two new things (Biotin 5000mg and Biotene mouthwash) and Imuran. I’ve taken two of my loading doses……def not good. I feel like I have mono hung over. I’m hoping this eases but one major positive is that I’m not I’m classes this week! Yes!
I laughed when the pharmacist was like….live in a bubble!!!! Hahahahahha I am like how??? But we are praying this new med helps! I’m seeing more doctors on Friday! Yay!! But a good thing, I’m highlighting my hair to help perk me up!
And since I’m bouncing everywhere tonight…Maybe it is just me but sometimes this journey feels sooo lonely! I texted someone after my doctors appointment and the response was “k.” Simple…nothing else…I guess I expected more from this person. It just further makes me sense that sometimes this painful life is lonely. So many people don’t get our journey. But yet we can still find those few and far between gems.
I found someone who I have actually never met. But she encourages me so much, we are on the same journey. I know this week she and I (within a day) started new meds. To be able to text someone and they get it….amazing!!
If you know someone who is on this RA/Lupus/ Fibromyalgia (or another invisible illness) be understanding, be supportive, be encouraging and above all listen. We desperately need people who understand and encourage us.
If you have an invisible illness (RA/Lupus/Fibromyalgia) be encouraged to share and connect. I always love meeting new people. Thank you for all who encourage me! You are truly awesome!
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!
Wow….the house is quiet..the girls are at my feet (well one is) and I’m just sitting here listing to Jim Brickman on my Pandora. I guess I am in a contemplative mood….maybe being sick right now (thanks to getting used to Arava) has made me slow down some. Here are some my random (yes RANDOM) thoughts that have crossed this brain this morning…
I made it through December 3rd this year with out crying! Wow ….Dad’s birthday….I remember LOVING to pick out his card. Even when I was in college I would go early (like October) to pick out his card and mail it, so despite the 6 weeks to mail something. Dad would get it on his birthday! It has been hard these last almost four years to walk past the Dad card aisle. Dad I still wish you were here to get a card from me, to see all my life has become. Dad, I did it….I made it one year in a doctoral program. You would be so proud. I’m 3 years into a marriage and we are still going strong! Can you believe it….me…your child that Lord knows I (personally) never thought would graduate high school. Much less successfully graduate college in 4.5 years, go straight into a 60hr. MA program, finish in 3.5 years with a 4.0, and then enroll right into a doctoral program and finish her first year with a 4.0. Goodness if someone had told me all this when I was a little girl I would have laughed at them..it was not my plan…it was not at that time my dream…but now I love it. Dad I’ve grown up sooo much these last few years you have been gone…I wish I could pick up the phone and tell you about it!
I still see December 22nd, as my parents wedding anniversary! Every time I hear the date, I remember (like I did when I was a kid) …hey its Mom and Dad‘s wedding anniversary. This year would have been 56 years! Daddy died right after they made it to 51 years. Can you imagine…51 years with one person as your constant companion, your lover, your friend, and the person you share everything with in life. Can you imagine that person suddenly being gone? I did not understand it then when Dad was sick, when Dad was in hospice or the moment I watched my mom hold my dad’s hand the moment he was gone. I did not understand how heartbroken my mother was then…..but now that I have been married 3 years….I am seeing a small insight to her grief. I would be heartbroken to loss my spouse…I cannot imagine in 47 years how much harder it would be! Wow how I have grown up!
I have to date made my dreams happen despite my RA! I know I am blessed because many of my friends despite their Rheumatoid Arthritis struggle so much more and have it so much harder than me. And I know we should never ever compare ourselves but honestly people we are human…and we will! I am so grateful my body worked so that I could go to class every Wednesday (I did not miss one Wednesday this YEAR!!!) and I could get the homework done…sometimes early! I am so thankful! So very very thankful! This past semester was so rough…I worked hard make it through the rough night and I paid dearly for it with serious pain and swollen joints. However…the semester is OVER! And I do well gradewise and I learned so much. So yes I am thankful so very thankful for success despite a limitation that many do not understand.
For all that read this, thank you for taking time to read it. Thank you for being part of what keeps me going battling my journey. I was sitting in a hospital bed when the idea to blog came to me. I knew I had to stop being angry and start using this pain and suffering for good. As a counselor I knew journaling was a good way to process things…so I realized you know others have to be suffering too…others have to be fighting this battle too. So I started a blog hoping to help anyone who wanted to read it…if nothing else to let them know YOU ARE NOT ALONE, I AM HERE TOO! And that has been the goal so far…this is not a place to find insight to much else (although there is the occasional odd post about a medicine/tx etc) instead it is a place to simply read of someone LIVING despite a tough tough invisible illness.
Don’t you love my contemplative mornings! More to come…
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!
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
My hubby surprised me this morning with an adorable Easter basket! Of course he remembered my love for stuffed animals, my need for sugar free candy and why not throw in a HUGE bottle of Fiji water (my fav)!!!!! Loved it, it really perked me up!
Today I woke up after 12.5hrs of sleep! The exhaustion from getting used to Arava combined with Fibro fatigue whew…I’m ready to go back to sleep!!!!!
Resting and visiting a wonderful family for Easter dinner tonight! Then resting some more so I can jump into homework tomorrow!!!! Maybe a small thing today but for sure tomorrow!!!
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
Day two back on meds…and man do I feel the side effects. The nausea..the COMPLETE exhaustion! But at the same time I keep telling myself that maybe by next week this time…my body will feel better! I did manage to get food twice today so that’s a good thing
It was a good day though, today the hubby, FIL, and I made it to our church’s Good Friday service. Then my hubby and I stayed behind to help with the Stations of the Cross exhibit. I was so exhausted when I came home…I sat on the couch and slept for four hours! It was great though to touch other people’s lives. I also got to call my hospice patient’s family. I did not get to make my visit but it was great to spend 30 minutes on the phone with the family, perking them up a bit.
What a day..pain/sickness and tough times but I’m thankful none the less!