so we meet again

Yesterday I felt great so I made the mistake that I make quite often on my good days....I over did it! And today I am paying for it. I woke up hurting more than usual but I could deal with it. Then as the hours crept by I felt my energy leaving as though someone pulled a plug and drained it all.
I decide to go lay down because even the act of sitting is exhausting. I nap for a few hours then wake up feeling like someone has beat me. I get out of bed to eat so that I can take something for the pain. I have to fight my arm to bend bend just to lift my food to my mouth. This makes me even more exhausted so it's back to bed I go.
We can ignore, deny, and fight the fatigue and pain but ultimately we just have to ride it out and pray it doesn't last long. I realize I still have a lot to learn about listening to my body, and that it is ok not to say yes to everything. But most importantly not to beat myself up about not being able to do as much as I'd like to on my bad days. What can I say I'm a work in progress.

Dont worry, just freak out

I've been trying not to freak out ever since I started noticing I was losing more hair than I normally do. But I couldn't help but freak out this morning when I saw the handfuls that I lost while washing my hair and the other handful lost when I brushed my hair. I'm afraid I'm going to end up bald!

From the feedback that I received its pretty normal to lose your hair while taking Plaquenil, and several other RA meds. Also the stress of having to deal with a chronic illness can also contribute to hairloss. It was comforting to hear that no one had gone completely bald. Their hair did thin to the point that some had to change their hairstyles so it wouldn't be so noticeable. Guess it's time to buy some volumizing shampoo and conditioner and talk to my doctor about possibly trying folic acid and biotin. 

Will you?

May is arthritis awareness month so I was excited when I checked the mail and saw that my "I am the face of arthritis" shirt came in. I will be wearing it to do my part in helping raise awareness that arthritis isn't just an old persons disease. Arthritis is a complex group of musculoskeletal diseases that consist of about a hundred diseases.

If you were to show anyone a pink ribbon they could tell you it's for breast cancer or that a red ribbon is for heart disease, but not very many could tell you that a blue ribbon is for arthritis. Now I'm not belittling breast cancer or heart disease those too are serious diseases  and it's great that they receive as much awareness as they get. Arthritis is also a serious disease that shortens the lifespan and is the leading cause of disability. With that being said I truly believe it's time for this disease to get more awareness so a cure can be found. May 10th was go blue for arthritis day and it was amazing to see all of the people from all over the world who went blue to help raise awareness. I didn't jusjust go blue for one day I kept it going all month. Now the question is....Will you go blue too?

Excuse my my ugly veiny feet, but my veins tend to go crazy when I'm flaring.

What is this?

So last night I had this burning feeling throughout my legs like I had been sunburned even though I hadn't been in the sun. The skin on my thighs was very sensitive with red splotches. I had this happen before but only on my hands and feet which I assumed was part of the Raynaud's.
Well last night I didn't sleep much because of the heat that was radiating from me. When I did finally fall asleep I was woken up by the same burning sensation on the left side of my face. There's no redness, rash nothing it looks normal. It hurts too blink and for my hair to brush against my skin. I guess I'm going to have to talk to my doctor.





This is when my feet started doing it.

Things you should never say to someone who has RA

I've dealt with several types of people before my diagnosis and after. Some of these people I would've loved to sock them in their face. Thank goodness there are more who mean well but there are some things that you should not say to someone who has  RA or to anyone who is chronically ill. These illnesses rob us of so much already so the last thing we want is a verbal slap in the face. So I've compiled a list of these things.

1. It's all in your head, you're faking, or you just want attention.  I was told often by a few family members and friends that it was all in my head before I was diagnosed. I found this to be the most hurtful because the last thing you need is for someone not to believe you.

2. Aren't you too young for that? When people hear arthritis they assume that it's an old persons disease. They often mistake it for osteoarthritis which is caused by wear and tear and is commonly seen in the elderly. Rheumatoid arthritis is an autoimmune disease which can strike at any age.

3. My great aunt Flo had that and she cured it with.....! Most likely she did not have RA because as of now a cure has not been found.

4. You should not be taking all those meds they are dangerous! Yes these meds are strong meds with plenty of side effects but they are needed to slow down the progression of the disease and it is more dangerous to be off of them.

5. You should exercise more! Many people who have RA were very active before they were hit with it. I myself worked out six days a week. Yes exercise is important but those with the disease now have to find workouts that are ready on your joints. You also have to find balance because if you over do it on your good days you can spend days recovering.

6. Are you feeling better yet? Rheumatoid arthritis is a chronic illness, meaning you will always have it. You may have periods where the pain is not as noticeable but it is always hanging around.

7. Losing weight might help. This is not so easy for RA patients because one of the drugs that are commonly used to treat the disease are steroids, these cause weight gain.

8. But you don't look sick! Rheumatoid arthritis is considered an invisible illness. the disease is doing its damage on the inside of the person.

9. The pain can't be that bad. The pain excruciating I wouldn't wish it on my enemy. There's no way of you knowing unless you experience it yourself.

10. Here take a Tylenol it will help. Trust me Tylenol will not touch the pain. Major pain meds are often given to help control the pain.

Follow up

Today I had my follow up appointment with my rheumatologist. I received some good  the lupus and sjogrens tests came back negative so the original diagnosis of RA, raynaud's, carpal and tarsal tunnel started the same. She explained to me what they look for during the physical exam for RA. She said there needs to be two joints that are swollen through out your body. I have five in just one of my hands that's not counting the swollen joints in my other hand, feet, etc.
Since we've been having some crazy weather the last three weeks have been rough on me so I wasn't able to tell if the Plaquenil was working. She informed me that it made it difficult for her to know if she needed to switch meds so she wants me on it for a few more months to see if it's going to do the job. She also gave me a kenalog injection to help bring down the swelling and to help with the pain. She also is having me see my eye doctor to make sure the Plaquenil is not damaging my retinas. Over all I feel pretty good about how the appointment went. It was a huge relief to find out that those tests came back negative I won't lie I was worried about them. Well I'm off to bed...Good night!

The Spoon Theory

Christine Miserandino came up with the spoon theory as a way to help people understand what its like to live with a chronic invisible illness. She got the inspiration while eating with a close friend, who had seen her on her good days and bad days, but still had trouble understanding.
She used spoons to represent the limited amount of energy that those with chronic illness have. Christine then set a certain amount of spoons before her friend and asked her what she did in a day and to include everything. With every task she lost a spoon. Even a small task like brushing her teeth cost her a spoon. It shows that unlike healthy people who do these things without thinking those that are chronically ill have to think about what they do so they don't use up their spoons for the day.
This theory is now known as The Spoon Theory and is loved by people around the world because it helps people to understand what is like to have to live with chronic invisible illness. You can find the full theory at www.butyoudontlooksick.com.

Tips that I have found to be helpful

These last few weeks I've been flaring pretty bad. So I thought I would put together a list of things that I have found to be helpful.

1. Listen to your body! The number thing I am trying to learn is balance. On my good days I would try to get as much done as I could then pay for it for days afterwards. So be patient with yourself and don't over do it.

2. Try to avoid wearing clothing and shoes that require you to button, zip, or tie. Normally on flare days I wear either pj's or sweats, it has nothing to with being lazy its just easier on your hands.

3. My all time favorite hot baths! I have found those to be really helpful that is on the days that I can get in the tub. I use Epsom salts (always ask your dr) in super hot water. I have found that that's the only thing that's brought me close to being pain free. When I was waiting tables I never minded doing dishes cause I could get the water super hot and soak my hands in it, my co-workers were always teasing me that they were going to come in and find me in the sink.

4. Icy hot extra strength and biofreeze. I swear by this stuff. I keep it in purse, by my bed, pretty much within reach. It comes in a stick form if you don't like the smell to be on your hands or a cream. I don't mind it getting on my hands but I do have both.

5. I tend to freeze especially when I am flaring (the fevers don't help), so I try to keep extra blankets around. Since I also have Raynaud's my feet are always cold so I wear at least two pairs of socks.

6. When you're flaring you often lose your appetite, but also your meds can do a number on your stomach. I have found that crackers help. Also ginger candies help with the nausea, ginger ale and mints are helpful too.

7. Don't be afraid to ask for help! I know how frustrating it can be to not be able to do things you normally could do. My mom had invited me to eat lunch with her when I got my food I wasnt able to cut it because my hands hurt bad I was even having trouble holding my fork. After watching me struggle she asked if I needed her to cut it for me. She told me that know matter how old I get I'll always be her baby and she has no problem helping. That helped me realize that yes there are a lot of people who don't understand us but there are plenty more that are willing to help. So I now have no problem asking for help to open things, do my hair or to climb the steps.

8. RA causes you to be very fatigued. So in order to help you save spoons try sitting down to do your hair and makeup. For those who haven't heard of the spoon theory I'll write about it later.

9. Try to buy your shampoo etc in bottles that have pumps. These are very easy on your hands.

10. Find the humor in things. I have found laughter to be very therapeutic.

Oh the wonders of make-up

I took a look at myself in the mirror this morning I almost didn't recognize myself. My face is puffy, my eyes are red and swollen with black under eye circles. I look like I've been in a fight which is true I've been fighting a flare for the last week.

We were asked in my support group if we had a choice of not looking sick or looking sick so more people would be more understanding which one would we choose? I personally would choose not to look sick, though in some situations it probably be easier if I did. But to be honest if I looked as sick as I feel I'd probably scare people. So on the days like today where I do look sickly I am thankful that I have make up. Oh and my sister because on days like today where I can't lift my arms she does my hair and makeup. Not trying to toot my own horn or anything but I've become a pro at covering stuff so that I look like my normal self. It does take more layers than I normally wear but what ever works right?