a letter I found online for RA newbies :)

This letter is such an encouragement, I had to share!  I LOVE the freedom that comes with accepting life on life's terms. God is in control- He has always been adoringly sovereign over me, nothing changes.


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A letter to all the Rheumatoid Arthritis "Newbies"
My heart ached as I remembered exactly what it was like to be a newly diagnosed rheumatoid arthritis sufferer, or a "newbie".  So with all those emotions running through my mind I have decided to write a special letter for all the newly diagnosed sufferers out there, for I too have felt the same way.
Dear newly diagnosed fellow rheumatoid arthritis sufferer,
I know that the many emotions and all the unanswered questions running through your mind right now may be overwhelming.  You may feel like you are all alone, left with an incurable disease to bear for the rest of your life.  You may be wondering what you have done in your life that was so awful that you deserved the daily pain of this crippling, debilitating disease.  I know, because I too was suffering with these emotions and unanswered questions.   Please know you are not alone, you are never alone!
If you are newly diagnosed there may be some things that your doctor has not prepared you for.  You may begin, if you haven't already, to experience a period of depression.  Please know that this is very normal.  There is no need to punish yourself for these feelings for most of us have been through this, and there is never any right or wrong way to feel in regards to this life changing diagnosis.
For some of you this diagnosis may, at first, be a relief to your long struggle with trying to receive a diagnosis.  Many of us have felt that relief before as well, after spending so much time trying to convince the doctors that there was, in fact, something wrong with us.

The depression itself may be overwhelming.  There may be days, weeks, or months where you want to just lie in bed with the covers pulled over your head and wish that everything was all right, that you weren't sick.  When you start your new medications and your treatment plan, please know that you may not find relief from the medications right away, as some take 4-6 months to take effect.  It is normal to find frustration in this and to wonder that if the doctors were faced with this same disease, could they handle waiting 4-6 months for some type of relief.  There will be days when you wonder how you can ever make it another day with this pain.  There will always be days when you ask yourself this.  You will make it through this.   We have all felt this same way with the depression, the uncertainty, the unanswered questions, and the loneliness, but I am writing this to reassure you that life does not end here.

It gets easier
While I can tell you that life gets better, and living with this disease gets easier, I cannot tell you when or where that will happen for you.  So instead, I will provide you with hope.  I call you my fellow rheumatoid arthritis sufferer, but what I prefer to call you is my fellow rheumatoid arthritis fighter.  That is what will bring you hope.  Fighting this disease will bring you hope.  You may wonder how it is possible to fight an incurable disease.  I too have asked myself this same question after being bombarded by family who told me that I had to fight this disease.
This, my fellow fighter, is how you fight rheumatoid arthritis.  You start by getting out of bed.  That may sound very simple to a healthy person, by with rheumatoid arthritis, this is never a simple task.  You may not be able to get out of bed due to the depression.  You may not be able to get out of bed due to the pain.  Or you may not be able to get out of bed due to the fact that you were up all night because of the throbbing or maybe because of the side effects of your medications.  But to fight this disease, you first must get out of bed.  Please know that there will be some days when you can't get out of bed.  The pain may be too unbearable, or you may just need a day with the covers pulled over your head.  That doesn't mean that you are not fighting rheumatoid arthritis, it just means that you need a day, or two, or three to rest in order to have the strength to fight again.
The hardest step
Now the next step in your fight against rheumatoid arthritis is the hardest one, and it is also one that you have to figure out on your own.  The next step to fighting rheumatoid arthritis is to live.  It's as simple, yet extremely difficult, as that.  The hardest part of this step is that you must find your own reason to live your life, and live it well.  If you aren't at the point where you can do it for you, then do it for the ones around you who love you.  Do it for the ones who have brought food to your bedside on one of the days you were just too depressed to get out of bed.  Live for your spouse or your kids who may have seen you give up so much, that they feel they may have lost you forever.  Then, you can do it for yourself.
Severe rapidly progressing Rheumatoid Arthritis
You may ask how I dare tell you how to live your life or what to expect.  I only tell you these things out of my past experience.  I have had rheumatoid arthritis since high school.  I didn't experience severe pain until I was 23 after the birth of my second son.
 After that I spend two years of my life on a mission to get a diagnosis, even after my physician told me that I had absolutely no medical reason to have any symptoms.  At the time of my diagnosis I was told I had so much damage in the joints of my fingers that I would not be able to pursue a career as a court reporter and I was only three months short of getting my bachelors degree.  I have lost out on a full year of my kids' lives as I lay in bed.  My husband has had to feed me, dress me, and he has seen me spend hours screaming in pain until my voice no longer sounded human.  I am now 29 years old and have what many rheumatologists have called severe rapidly progressing rheumatoid arthritis, and I am living well and fighting this disease.
You are not alone!
I have chosen to write this letter to you, as well as share a little of my life with you to let you know that you are not alone.  I want you to know that I too have experienced depression, and I still have unanswered questions.  I have felt the hopelessness and the uncertainty of my future.  I have wondered what I have done to deserve this disease, and I have wondered how I could possibly live one more day with the pain.
But I have chosen to be a fighter.  It is not a decision that came easily to me, or one that I made right away.  I wake up each morning and I know that if I can just get out of bed, then that is one ugly slap in the face of rheumatoid arthritis.  Yes, I lost all the plans I had made for my future, so I made new ones.  No, I can't do all the things I could in the past, but I feel deeply, laugh louder than anyone, and am constantly forcing myself to get out of bed.  It's not easy, but it does get easier.  It's not always fun, but it is worth it.
Rheumatoid arthritis can only take from you the things you let it.  Only you can decide when enough is enough.  We are all here for you.  All of us fellow rheumatoid arthritis fighters have felt the same way.  Maybe we can be the ones answer some of your unanswered questions.  Maybe we can provide you with hope.  I am a strong rheumatoid arthritis fighter, but together we are stronger and we will make it.  You never have to fight this disease alone.  If there are days you feel like you just aren't strong enough to fight, give us a chance to help or to fight for you.  Living with rheumatoid arthritis is a battle, but not one I am prepared to lose...are you?

ra

This is going to be the short and sweet version of a blog entry-

1- pretty much all my joints started giving me trouble 6 weeks ago.

2- I got the diagnosis of rheumatoid arthritis today.

3- I am actually very Thankful for this diagnosis.  All the issues coming from one stemming reason feels so much more manageable, not to mention with the new medicine that I am on, perhaps I could have full relief!

 I am not frustrated at the diagnosis because my joints were already becoming "deranged" in my feet and jaw, not to mention the pain I have been in the last month or so. How much better to have an answer! I have gone back and forth on if I would post on this actual diagnosis but-- how can it encourage anyone else who has it if I keep it to myself?  And honestly, the effects of a joint disease aren't secret- haha, did you see me with a broken foot for 8+ months?  Ha.  Anyway, I figure why not post about it, write even about struggles, and victories, and be honest with how God is using it.  Maybe someone could be encouraged!

roller coaster

At some point repeating the phrase "I can't wait for things to get back to normal" becomes the new normal. I try to keep my expectations in check, surrender the outcome to God, remember the bigger perspective.  It is not easy. Eh, all that means right now is that I am starting to get exasperated about my jaw.  The arthrocentesis was this past Wed.  It went as expected, I woke up as expected, I have taken all muscle relaxers and steroids as instructed.   While I was out during the procedure, the surgeon got it open. He said it opened with a very loud pop.  On my own, I have yet to be able to get it open again.   exasperated. 

Despite a lot of muscle relaxers, that always have worked till now, there is a painful point where it will go no farther. ((I have forgone the Vicodin after 3 pills this round, advil instead, because weaning my body off the side effects of Vicodin doesn't sound like a fun add into this mix)).  I have put ice packs as instructed, then heat packs as instructed, stretched it, tried to push through the pain, and I cannot get the joint to extend.  I asked the surgeon about this on Wed night when he called to check on me. He said it was not unreasonable for it to not open the night of, because he had put a lot of fluid in the joint which needed time to absorb, and the muscles were swollen/sore.  He said to stretch it, use heat, and it should open.  If not we will talk about it Wed at my follow up.    

Its Sunday night, I have one more muscle relaxer to take, tomorrow morning, and then I am done with the 3 a day sets.  I have 3 more steroid pills to take, 2 tomorrow and 1 Tuesday, and then I am done with all the prescribed medicine for this last go-round.  I am gearing up for the possibility that it will not open by Wed morning at my follow up with the surgeon, and that I will have to "give it time".  Or, have arthroscopy.  Either way, my hope for everything to fall back into place like it was before even the foot surgery this fall is gone now. I have decided to give it up.  I am simply readjusting my definition of what normal is for me now. This last year of extracting out, stripping out, so many of the activities I would run around doing has become a shift of how I function rather than a season of rest. Maybe I am not made to handle a lot of stress in my life, so my new normal is to live in a way that reduces as much stress as possible (like taking naps, and only having 2 new things on the calendar per week, and keeping my apt clean). Lord knows I have had my absolute fair share of serious stress in life, maybe I tapped out.  

One thing I know is this, and the surgeon told this to me quite clearly!...  My jaw, as I have been living, (ie chewing normal food, crunchy, chewy stuff etc) has lost 25 years of life.  I am not joking.  He flipped a lid when he saw my age, and repeated over and over that I am too young for this, looked me right in the eyes and said "ppl come in with where your jaw is right now when they are in their mid fifties. I do not know if your jaw will last your life."    So something has to change. I HAVE to redefine my normal. Not just in eating only soft food, but in taking it easy even when I feel like I could handle more.  God's got this.

American Revolution and Fair Trade

One more day until Monday! I took a couple vacation hours Friday bc, no surprise, the migraine got that bad.   If this arthrocentesis/arthroscopy doesn't work, I am going to ask for different migraine medicine. It helps some, but obviously I still can't perform normal life while locked. One day at a time.

Something came up in conversation Friday night and this afternoon- how satan works by getting us to feel defeated.   I realized something new this weekend...the spiritual fight isn't the action or situation in and of itself always, warfare is getting us to feel defeated in it.  I realize that is a somewhat obvious statement but its a breath of fresh air to know that relief does not have to wait to come until the situation is better, it can come in the middle of the situation by renewing my mind on what is really going on from an eternal perspective- and the power I still have given to me. 5 illnesses can't take that power away, but I can give up and let it sit there unused.

Anyway, today was a great day of surprises! I went to a DAR 101 (Daughters of the American Revolution) class with a friend to become more acquainted with what DAR does and how to be involved. I think I have found my new hobby!  They have all these committees to be part of, and have enough activities to fill your calendar if you wanted.  I am going to of course just go very slow, the last think I need to to jump into involvement and have my body fizz out on me again!   Once a month meetings and 1 committee sounds fun to me.  Love new hobbies.               I also went to a fair trade type of party at a friend's house, and got some awesome stuff from Ecuador, Uganda, and Ethiopia I think.  Love it.  While there, I ran into a friend I haven't seen in a while and as we were chatting she reminded me of this Bible study she goes to that I had meant to check out. So tomorrow I am going to go and see if its a good fit! I have been looking, so glad to have at least a plan of sorts.

So, all in all this has been a great weekend, and only one day till Monday's oral surgeon consultation, and I will hopefully get the surgery date I am praying for (asap basically) with full medical coverage. That would be Such a load off!!!! We will see!

Resume activities!

I got the news I was praying for today! The foot is 100% healed. YAY!  It hurts, but I have read that it can take up to a year to feel back to normal (and the "do-over" surgery for the midfoot joint was just end of May). Now that I know its not broken I feel like I can deal with any pain of "recovery" because I am not making it worse!  The dr even said I should get feeling back on the top of my foot and toe (I can't feel it right now because they had to move the nerves over to get to the joint).  I don't mind, it is ALL worth it when I realize the arthritis pain I was having.  Each time my left foot hurts I get a reminder of what the right one used to feel like, and it makes all the frustration of this process much less frustrating. :)

I started doing intentional calf exercises today.  I'm not sure how long it takes to repair atrophied muscle, but I have 5 inches to regain! I'm starting relatively slow, just walking and isometric exercises for now. I wanted to break out the Dance Dance Revolution, but that will be more like a long term goal :)

I have almost made it to Monday! Praise the Lord.

And so it begins

Tomorrow kicks off a 2 week dr marathon, and I am praying for good news all around!  I see my orthopedic surgeon tomorrow afternoon for my possibly Last round of xrays on my right foot!   Thank goodness I take diatemaceous earth which supposedly gets rid of any radiation in your body, 33 xrays on just the right foot since Oct!    I am hoping for the best news which will be "Meagan, your foot has healed and you may resume normal activities", aahhhh music.    Fingers crossed.   I was supposed to stay in the boot till tomorrow for extra caution, but I didn't want to have my first steps without the boot hurt after the appt and me not know if thats normal or something wrong, so I have been boot-free since Monday. I really don't think 4 days will make or break it. ha.

I am taking the next 2 weeks day by day, but I wish it were monday the 6th at 2:30 already.  I cannot Wait to have the consultation with the oral surgeon.  I had to leave work early yesterday because the migraine got really bad, and that while having taken 2 of the prescribed pain pills.  God is so awesome, my boss happens to be out on vacation at the moment, and I have long finished all the assigned items to my desk. So I have very big down time right now waiting for my boss to return monday.  Perfect, because either the migraine makes me unable to concentrate at all, or the pain pill makes me very sleepy.  Love how He works things out timewise like that. :)   All the major hard-hitting Dodd-Frank items have been assessed as well already, so I am ok on that end too.

The problem I am having with the tmj lock is that it seems to make the inner-ear pressure worse the longer time goes by.  So while it used to be a matter of pain management, its now dizziness and ringing. I tell ya, I am mucho excited to be done with 2012.  Good riddance. I realize we have 5 more months, but I see the end of the tunnel, and I am hoping I never repeat a year like this one.