Change….

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!

19 thoughts on “Change….

  1. i hope these new meds help. i know what you mean about being lonely, my husband gets it but my sister really doesnt yet she has ME. Hope you continue to get support from fellow sufferers 🙂

  2. Praying your journey is not so lonely. I read your blogs but don’t always respond. You are in my prayers.

  3. I was just recently diagnosed with RA. I’m positive the people I work with and my family and friends don’t understand at all. And how can you talk about what’s going on with people who don’t get it? I’m so thankful for blogs like yours where I can interact with people who really do understand. I hope the meds work for you. I’m so new at all of this that I’m not really sure of what meds might or might not do the trick for me, but I guess none of us know until we try them, right?

    1. Hi! It is great to meet you. You know I definitely under most people not knowing/understanding/getting it. It is sooo good to find someone who gets what I am going through.

      I find it is VERY hard to talk with people who don’t get it but I do try. Mostly, because I want to educate people. Things for us will never change unless we speak up about it.

      Have you been on any DMARDS or Bio meds? I started on Plaquenil, went to MTX, then to Arava, and now to Imuran. Before that I was on a variety of arthritis meds like Celebrex and Mobic. I only have tried Lyrica for my Fibromyalgia and it works well for me.

      Stay in touch! I hope that today is a less painful day for you 🙂

  4. No, when I said I was just recently diagnosed, I meant like really, really recently…so I’ve been on no meds at all yet…just got my appointment set up with the rheumatologist today…so we’ll see how that goes Oh well, I guess I have been on Mobic which, of course, did nothing for me. And OTC stuff…again, no help at all. I’m hoping there’s something out there that will help.

    I was off work for a couple of months and when I came back, my boss seemed to think I should be able to do all the things I was doing before…even tho I had a page full of restrictions. I guess you could say he doesn’t get it.

    I live by myself, so that kind of concerns me, not really knowing what’s to come and not feeling like I have any help if I need it. I have family in the area but no one has so much as asked if I need anything or even how I’m feeling. Again, I guess you could say they don’t get it either.

    But I’m just trying to stay positive and not go looking for trouble…why think the worst when it may never happen?

    1. Wow! A newbie 🙂 been there…still remember that day like it was yesterday. Let me know how it goes! I can also be found at http://www.facebook.com/stlralf and @rafibrotucker20. And on here of course.

      Sometimes I find myself sounding like a broken record. Such as “no I’m not better,” “no I’m not just having one bad day,” “no I don’t just want attention,” and “just because I look good doesn’t mean I feel good.” And many more, I have said it over and over and despite being on this journey for a few years….it still happens.

      I worry sometimes too about being alone. There a few things (well a lot of things) I struggle with now…like opening jars or turning handles. I have invested in some things to help. And I have learned do plan plan plan. I know now I do one big thing in the day like get highlights (sound small doesn’t it)…and then I know I have to rest/take a nap. Tomorrow for example I have doctor appts and a hair appt. Tonight I worked in my office for a little bit, now I’m resting. Tomorrow ill get up early to get ready and then nap after my doc appt and before my hair appt. Then when I get home…ill probably sleep again. Different lifestyle! That’s for sure..but doable!

      Hang in there! Hugs!!

  5. I’m going to have to get something to open jars…and soon…I drink my water and tea out of travel mugs and I’m finding it really difficult to get the lids off now. (I like to use something that has a lid because I have a nutty cat who pulls glasses over whenever she finds one..after cleaning up a couple of those messes, I decided I needed to do something else…and I couldn’t stand to get rid of the cat…lol).

    Oh my gosh, I feel like I’m not alone!! I go to work and, when I come home, I immediately soak in a hot tub to help ease the pain…I can no longer do those extended shopping trips that I used to do…you know, making all of the stops I need to make in one day? Now I plan to stop at PetSmart one day, Kroger another, CVS on yet another…and there are days when I’m too tired to do any of it. And I’ve felt so guilty for taking naps…or going to bed super early. It’s such a relief to know that it’s not because I’m lazy!

    1. Gosh not lazy at all!!! I used to be a go go go person, morning until night. Now I live for naps and I have to do one big thing (like going to the store) and that’s it. Our bodies get tired way to fast! I used to love to shop….now I shop online lol! And that’s what it is there for 🙂

  6. I so understand about feeling lonely. I’m really struggling right now with my boyfriend – he just doesn’t seem to get it nor does he want to. When I try to talk to him about RA or fibro he says I’m looking for a pity party. I’m just about to the point of asking him to leave…I figure I’m better off alone than with someone who is so unsupportive.
    I hope the new meds start working soon. I’m going through the loading dose phase of Savella for my fibro right now…fingers crossed that it helps.
    Hope tommorrow is a lower pain day.
    Cheryl

    1. Aww I”m glad I am not alone, I just hate how sometimes it feels like it! We are definitely not looking for a pity party! My goodness we could use our energy for something great and fun …def. not a pity party! How are your new meds working for you?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s