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RA AND THE FAMILY FIT

LIFE WITH RHEUMATOID ARTHRITIS

Month

July 2015

Do You Talk, They Hear You But Are They Really Listening

Do you find yourself telling the same people the same things over and over again about your RA.  About your symptoms, how you feel, how you can’t do the things you use to do or how there are days you just can’t get out of bed. Then a week later you hear “what’s the matter with you, are you sick again”.

Yes those are some of the things we have to go through with RA.  We tell our story over and over again even to some in our family.  Are they really listening when talk.  When we go through all of the explaining that we do, when we say my hands hurts today or my feet are killing me today so I just can’t do anything at all.  You get those looks like wow, not again.

Do you get that boy are they lazy and just pretending because they don’t want to do anything look or feeling from some.  Why is it so hard for people to understand that what we’re saying is the truth.  That we would do anything to change our situation.  So while we talk about all that we’re going through to everyone, some just aren’t really listening.

What do we do with that?  Take it for what it’s worth.  Realize that we cannot change what people feel or think about us. Just remember we know what’s going on with our bodies and if some people don’t get it, then we can’t make them.  We have too much going on trying to stay healthy than to stress ourselves with those that aren’t supporting us.

So remember “Sometimes the People Who Loves Us Most Are the People Who Gives Us Exactly What We Need”.

I Have RA – I Hate It- But This Is My Therapy

I was diagnosed not so long ago and as I posted in my previous blog, it was tough for me but I got through it.  Told my family, got my meds and so goes the story.

I’ve always wanted to do something in some way to help others who have RA in any way possible.  Something as simple as telling them it’s going to be alright, I wish you well or God Bless you and have a Great day.

Guess what, I’ve found what is it is I want to do.  Here I am, doing my blog.  It is so liberating to do this.  It is My Therapy.  I feel if I can do something as simple as bring a smile to someone’s face or let them know that I maybe going through some of things they are going through and that I understand their situation and their frustrations I’ve done something.  Though I wish I could do more, just doing a little bit helps.

Sure this is a tough disease and there are so many times we don’t feel like smiling but if I can say anything that makes you smile or warm your heart my work and My Therapy has been done.  So I hope and I pray that reading my blog does something nice for you or brighten your day just a little bit.

Always, God Bless and have a terrific day.

Has My Medicine Stop Working Or Is It A Flare

I have been having pain for a while now since my problems with my teeth back in April.  On my prior post I mentioned those problems and the experience I had.  At that time I was given antibiotics which of course helps your body fight infections but prior to that I’d just had my infusion of Rituxan. Though it was close together, it couldn’t be helped.

I’ve done well on Rituxan but after taking the antibiotics prescribed by my dentist it seems as though my RA pain got worse. Nothing hurt tremendously but pain pretty much in all of my joints.  This has gone on up until today. So I finally decided it’s time to see my doctor to see if I’m having a flare or if my Rituxan has stop working.

So I saw my doctor, had great conversation, great examination and he advised he believes I’m having a flare.  So now I have to take a 10 day course of prednisone and if that doesn’t work we will have that “what do I do now talk”.  I guess my thinking is, does a flare last this long, from late April until now.  Really, has my medicine stop working or is it a flare.  How do you really know.  Well I have about 3 or 4 weeks to get my answer.  Of course the prednisone will do it’s job but what happens after that determines if my medication is still working.

How do you determine if it’s a flare or if your medication has stop working.  How long do you stay in pain and call it a flare.  I would love to hear from others about their experiences.

Here’s To Accepting My Shoes Are Too High For Me Now

I walk into my closet, pull out my cutest outfit and I get all dressed up,  I check myself in the mirror and everything is alright.  My hair is all done and I’m almost ready to go.  So, how many times have I gone through this, more times than I can count.

There’s one thing missing, my shoes.  I get my cutest little wedge shoes, or my heels, put them on, walk around a little bit and realize I just can’t wear them.  I tell myself, yes you can, you’re going to church or you’re  going to visit relatives so you won’t be standing or walking too much but that still just did not work.  So I pull them off and I’m so upset that I can’t wear them because not only do my my feet hurt but my knees as well and me emotionally.  So that’s what we go through with RA, not being able to wear the shoes that we once could because our bodies just won’t let us.

In my closet there are so many heels, high heel boots, espadrilles and wedges but I just can’t seem to bring myself to depart with them. They are still stacked there high on the shelf for me to look at and see what once was. The reality is, I will never be able to wear them again but it’s hard separating from that part of myself.

Have you ever felt that you’re giving up or have given up a part of yourself to RA and you’re angry about it.  Do you look down at your feet and say, why can’t you work the way you use too.  Does this add to your stress, make you depress or hate your situation.  If so, I do understand because that is me.  But I am Blessed that I can still walk and I am not taking that for granted and I’m sending my love to all of my RA friends wishing you the best no matter what shoes you maybe wearing.

Maybe some great hints at what type of shoes others wear now…..

RA – Breaking the News To My Son

Once I found out I had RA, I talked to my husband and he helped me through the hard time that I was going through.  He sat and he listened, he even watched me cry and he told me everything would be alright.  I couldn’t have asked for more support than that. You see he is my rock and I love him for all of the support that he gives me. Then I realized there was one other person that I had to break the news to and I really hated the fact that I had to do that.

That person, my son.  You see my son and I have a very close relationship.  Reason being for a long time while he was growing up, we were each others’ best support system.  Yes of course there were definitely other family members and friends  but we just had that mother and son bond. It’s funny, when I worried, he worried, when I would cry, he would also….get the picture. That was hard though because I didn’t want that pressure on him and I tried so hard to make things as easy for him as possible and made sure he didn’t have to deal with adult issues as a child.  So I really didn’t want to tell him about my RA because I did not want him to worry about me but I knew I had to because it was only fair and I couldn’t hide it from him.

Finally I told him, he was of course worried and wanted to know everything and I told him as much as I knew.  But he searched RA on the internet and saw a lot of not so good things and that really made him worry.  I explained that I am not as bad as some of things that he had seen on the internet. I explained my meds and my personal condition to him as best I could but he still worried.  Still I tried to make him feel better about everything and I still do.

One thing that I did do, I promised him that I would never lie to him about my condition and to this day he is one of my biggest supporters.  For that I will always be grateful.

I love you son, May God Bless you and give you strength and understanding through this.  Know that your support makes me stronger than you can every know.

MOM

What Happened To My Hair

I had to write this blog because I know there are a lot of you out there with RA that are having problems with your hair.  I have seen so many other post about this.  Well we know the meds we’re on does not help at all and we have to take one thing to counter act another thing so it’s like a vicious cycle and we have to deal with the blow that RA has given us.

Do you look in the mirror and you just stare at yourself because that full head of hair that you had once is not there anymore. I get it. It seems short, maybe stringy, unhealthy looking and you’re wondering what should I do.  You look on the floor and there it seems to be more there than on your head.  So we try different things to try to get it back the way it use to be but maybe it’s just not happening. I know because I see it happening to me.

Well it’s not too bad yet but I noticed it in the front, so I brushed my hair forward and that works okay but then I look in the mirror at the back and there in the top I see more of my scalp than ever before. The funny thing is I really don’t see much hair falling on the floor but I know it’s gone because it’s not like it use to be. I use to get sad about it and I still do sometimes but I try to make the best of it, Continue reading “What Happened To My Hair”

RA – My Surprise Diagnosis

It all started many years ago or sort of.  Let me clarify what I mean.  Years ago I injured my ankle and went through tons of test trying to figure out what my injury was while I was beginning to think was the impossible to finally learn that I’d pulled a tendon.  But at the same time I learned I had the gene for RA but it was inactive.  So I never thought anymore about it and I’m talking years ago.

Fast forward to 2010, I started having problems with my thumb which I attributed to my use of the computer.  Well a year later, I wake up, get up and my feet hurt and they felt stiff along with a few other aches and pains.  I didn’t think much about it but it went on for a week or so.  Then I decided to see the rheumatologist which I was fortunate enough to have one from my prior injury.  We talked about everything, we went through blood work and he gave me prednisone. A couple of weeks later, I’m back and feeling great.  The doctor asked “How do you feel”, I say, wow I feel great.  That medicine you gave me really worked. So here I thought, problem solved.  He proceeded to say, I hate to inform you “YOU HAVE RHEUMATOID ARTHRITIS”.

So there, My Surprise Diagnosis.  I was shocked, sad and speechless.  I had no clue what to ask or what to do.  He went over so many things with me and explained the disease and what I possibly could expect to happen.  Lucky for me, he was very sweet and very positive.  So my journey began.  My doctor, my meds, my family and my friends.  Of course my family is always first but as my journey began with my diagnosis on that day in his office, that is how it was.

So check back for more updates, would love to hear your story.  Always, Be Blessed.

RA and Teeth: Have You Lost Your Smile

Okay, I’m going to be honest, when I was first diagnosed with RA, I saw lots of post about issues that people were having with their teeth and I thought, well mine are fine, so I guess I’m one of the lucky ones so I don’t have to worry about that.  Fast forward 2.5 years and here I am with the same issues.  I began posting on other sites asking some of the same questions that I saw others post.

It all started with a little pain that never got to be anything more than that really but finally I did have to go to my dentist who sent me to a specialist that tried so hard to save the tooth but couldn’t. Then 8 months later I lose 2 more teeth within 2 weeks of each other.  So now I’m really upset, sad and worried.  All of these are teeth had root canals. I had to wonder why, but I knew. RA with a vengeance.

Had I lost my smile, yes a lot.  I cried a lot at first, couldn’t believe it happened to me because my teeth were fine for so long.  Then I would look in the mirror and smile to myself and saw that I had so many teeth missing and my smile looked so empty. I’m embarrassed at times to smile because of this but my family always tell me that I look great and I’m so thankful for that.  It’s actually sad posting about this but I’m working on getting things straightened out for myself so I can get my smile back. I have to remember that I do have so much to smile for and I’m thankful for that, so I guess I really haven’t Lost My Smile after all.

But You Look Okay, Are You Sure There’s Something Wrong

I’m sure we’ve all heard those words and I have say I know they can be very irritating or disparaging. Not only do they irritate you but they let you know that you’re not believed.

So that goes back to fact that a lot of people really don’t understand our disease.  I like to call it disease because with illness sometimes it’s believed with illness, it’ll just go away. You see even though a lot of us show no physical signs we are hurting just the same.

That’s why we get sayings like, you don’t look sick, you walk just fine or you act like you’re alright.  I hardly show visible signs only my right hand swollen and my right foot swollen a little but boy do I have lots of aches and pains. Some of us are fortunate to not have visible signs but none the less we hurt both physically and mentally and for those with visible signs we hurt for and along with you.

Do you ever get tired of the “I have arthritis too and I take some aspirin”, we wish it were that simple. Well it’s great we have each other who understand but a little understanding from the ones we need the most will take us a long way…..

To each of you, I wish a pain free and loving day!!!!!

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