Saturday, July 13, 2013

It's a bad day...

.....pain wise when I can't hold my camera up to take pictures!  ðŸ˜”

Friday, July 12, 2013

There is something to be said...

...about being a good friend. Being a friend isn't about looking to be recognized for your behavior, it's about knowing when and how to be there, even when someone doesn't ask you to be.  So it may sound like I am looking for recognition, and I am not, it's just that I constantly find myself going out of my way to maintain some friendships, and to be honest, it is quite exhausting!  I try, try, try, only to realize that I am the only one trying.  A one sided friendship is anything but that, and I think I am a damn good friend, so consider yourself lucky to have me on your side, and in your life! I think there comes a time, for everyone, when you take a look around, realize who your true friends are, and just let the rest all go. 

be well!
MB

“Friendship is the hardest thing in the world to explain. It's not something you learn in school. But if you haven't learned the meaning of friendship, you really haven't learned anything.”
Muhammad Ali

Sunday, July 7, 2013

been a short while....

......since I last came in and put my thoughts to text.  I have felt lately that I am on this never ending path, that is leading me nowhere.  Hopeless.  My heath issues are getting to me, and instead of talking about it, I find myself keeping it all in.  I feel weak, and I don't like it.

Anyhow...a recent visit to my doctor sured up one thing for me - TIME TO FIND A NEW DR!  If you ever feel like your doctor isn't listening to you, or dismissing your complaints, FIND A NEW ONE!  Honestly, I left my last appointment, in tears, leaving behind two more tubes of blood, and feeling like this was it for me.  Like I was stuck in the mud with all this RA shit, and it wasn't going to get better.  I spent a night up, because in case you didn't know it, I don't sleep. (at least not without the help of some good sleepy drugs!)  I did some research on the medications I am on, and with how I have been feeling lately. Two things I have found out, 1: How I am feeling is very common with how other people with RA feel, from  legit feelings, to physically how I feel pain wise, etc, and 2:NO ONE uses the drugs I am on right now, as they have been proven ineffective to treat RA!  I told my dr they weren't working, but NOOOOO..he didn't want to listen to me! There are other options for me, and I am in pursuit of them now. 

I am slowly coming to terms that I am not superwoman (insert loud exaggerated GASP here!)  and that I need to take things easy for right now.  I need to let other people do things for me, and be ok with the fact that things won't necessarily get done the way I want them to be done, I need not be the control freak that I am!!!  (trying! and figure if I put it in writing, I have to be held accountable somehow!)

Hopefully the 2 people who are reading this are enjoying their summer thus far!

Until next time, be well!
-mb

*******editing to say I have an appt with a new doctor July 17th - YAHOOO!  Very excited!  Thank you, thank you, thank you to those who helped me get in sooner than my original October 7th appointment!******

Monday, June 17, 2013

monday monday....

I was feeling much better than I anticipated this morning after a crazy few days....only to realize I feel good because I forgot to take my medication this morning!  FU  RA!!

Wednesday, June 5, 2013

A big fat F*** You to RA!

Rheumatoid Arthritis has ruined my day.  Again.  Another day "wasted" because I can't overcome the side effects of this awful disease and the medications that go with it: nausea, swelling, Heart palpitations, numbness in my hands, and now foot, and I can't forget PAIN, PAIN, PAIN.  I can't take it anymore.  I can't keep quiet about it anymore.  I AM DONE!

It takes a lot for me to sit down and talk about this, and let people know what is going on with me.  It makes me feel weak.  I don't like that.  I don't like the sad eyes I get when I say that to people either.  Right now I am angry about this, I am tired, and I am yet again - DONE!

Before you say anything, that may trigger a violent outburst on my behalf (thank you prednisone, for that wonderful side effect) , let me share an excerpt from an article on a blog I currently follow, passes the message along, from my point of view..and what you don't know about RA because you do not have it:

From the website : http://rawarrior.com 

"What I would tell those who are not living with Rheumatoid Arthritis,What we want you to know about living with RA

We want you to know what Rheumatoid Arthritis really is. We want to correct the myths and misunderstandings about RA. And, we want you to understand the consequences of a life with Rheumatoid Arthritis.
Think for a moment: Have you ever have tendonitis? Or “tennis elbow”? How about a sprained ankle? Maybe a dislocated finger? Heel spur? Torn rotator cuff? Broken bone? Jammed toe? Or a ganglion cyst? Maybe you have a bit of osteoarthritis in your knees? If you have, then you have a better ability to understand than you knew. Imagine that you had that painful incapacitating condition in every joint.
If you do not read any further, and you re-read the last paragraph, we will have made progress. That was not hyperbole. Rheumatoid Arthritis progresses at different rates, so your loved one may not have involvement in every joint, but you can still get the idea.
Oh, and if I may offer an ever clearer picture, add a bad case of the flu that to the cocktail. You are getting close.
Do you know which joints are involved with your loved one? Are you sure?
We also want you to see why we cannot forget about the RA for very long. Even though you cannot see it, it is eating us alive. Literally. And we are not able to make our hands or our feet do what we tell them anymore. So, if we can put it out of our minds for a few seconds, it comes back in again when we try to move.

Why we want you to know

Why do people with Rheumatoid Arthritis want the comprehension of the non-RA world? Why do we care whether you to get it? Obviously, it would be nice to have sympathy and to feel validated in our suffering. But that is not our point.
We want you to recognize what Rheumatoid Arthritis is because your reaction to our condition is sometimes not appropriate. Imagine with me again. What would you think if someone handed you a hatchet and asked you to chop some firewood with your broken arm?
No one would do that because everyone understands what a broken arm is. So, that response to your condition would be inappropriate. It would be ignoring the reality of your broken arm or at least extremely minimizing its significance. But broken arms are not invisible.
I have entitled this principle: Recognition Leads to Accommodation. It is the reason that most of us will hold the door for an elderly person or cut meat for a toddler. If any limitation is apparent, most of us will naturally make efforts to accommodate the disability.
Rheumatoid Arthritis brings disability and usually requires accommodation. Not doing so seems cruel.

people would have responded any differently if my diagnosis had been a more well-known disease like diabetes, heart disease, or cancer. I like to think so. I am guessing that people treat RA the way they do because they do not get it. I am hoping that I am correct."

For the record: I am not ever looking for sympathy, it's my fight, and I will gladly fight it alone, even if I don't want to, and I know I don't have to. All that said, I also have been told "You are too young for this.."  Not so, most people are diagnosed between 30-40 years old, (I'm 36) and more women are effected than men! 

So, if I look like I am having a bad day, if I am walking funny, or not going out of my way to be very social , etc..chances are, I AM having a bad day, as they seem to out number the good right now!

Enough said for now, because I could go on all day!

Be well!
mb

Monday, April 29, 2013

still lots to vent about...

...just not enough time in the day to sit and get it all out!  Spring is a crazy time for everyone, with new sport seasons starting, and lots of warm weather planning.  I have a lot going on in my crazy life that I would love to sit down and vent about/ share with you all.  I think it will help me get some frustration out by talking about things.  Anyhow...more to come.  Just wanted to hop on here and say hello, I've been thinking about letting you all back into my world again - see  you soon!

Sunday, February 3, 2013

lot's to be thankful for...

I had my follow up with the surgeon this week.  The mass I have is called a Fibroadenoma.  The most common non cancerous tumors found in breasts.  Thank Freaking God!  I am still having everything sent to MGH for a second opinion, and will know for sure if this is something I need to have removed. 

Today is my birthday.  I have a lot to be thankful for,  a lot to celebrate!  Most importantly, my health.  I am so grateful to be healthy! My 4 healthy children.  God, I love them so much!  My supportive husband, who puts up with my crazy ass!  My family, and friends, who I love more than anything!

I have learned a lot in the last year.  I am slowing coming to realize who I am, and I'm realizing who the people are that I can count on, and the ones I can't.  I have learned that even though I am the best person I can be, I have no control on how other people are.  Often we are disappointed in those we love, because they don't react to certain things the way we would, and I've learned that I have no control over that.  I have to just keep on being me, and let the rest roll of my back.

Thank you again, to everyone who has been so supportive of me.  I don't think you will ever understand, nor will I ever be able to exactly put it into words, how thankful I am for every message, text, hug, phone call - I am so blessed! 

This isn't the last you will hear from me.  I am going to keep this blog alive.  I'd like to think I can keep everyone interested/entertained, even if I am not amidst a medical emergency!

I am surrounding myself with people I love today, I hope you do the same!  Happy Birthday to Me!!

Be kind, be well!
xo
mb