Did you say chemo?!

I had my latest rheumy appointment a few days ago. While she was examining my joints she found that I had psoriasis on my wrist and on my ears. I have also been having trouble with my nails. They've been splitting and have gotten dry and brittle. I pointed them out to her she said that it was caused by the psoriasis and that your nails are where it usually first starts. She is now testing me for psoriatic arthritis. Apparently autoimmune diseases like to bring friends with them.
The Plaquenil was not working as well as it should have so it was time to change up my treatment. She had already discussed what the next step was at my last visit. She explained that if I did have psoriatic arthritis too the Plaquenil wouldn't touch it and the next step for my RA was methotrexate and that would also help if I did have psoriatic arthritis. So we decided that the best thing was to start the mtx. She explained to me that it was a chemo drug and that it will suppress my immune system. She told me that I would have to give myself weekly injections along with the Plaquenil. She also added cough syrup, folic acid, and vitamin a to help counteract the side effects. She had the nurse show me how to give myself the injection in my thigh. I was scared but it wasn't so bad. She told me to try my stomach next time cause it's easier there. I'm praying that this will be the treatment that works for me.

dizzy and brain fog and seizures...oh my!

So if my life hasn't been hectic enough lately between work, flares, and trying to go back to school. The seizures have decided to show their ugly faces again. I haven't had one since March and I thought I was doing good. Yesterday I woke up with really bad brain fog. I kept catching myself doing things that made no sense at all such as thing to put on two completely different shoes. I also had trouble remembering anything. And I was super dizzy I knew something was up but was hoping it was just brain fog.

Fast forward to later that evening at work. I start feeling really weird like I was shaking but when I looked I wasn't. Then I felt like I was drunk and felt really bad. I tried to put on a happy face a pretend nothing was wrong while secretly I was afraid that I was going to black out. My mom happened to go in and as soon as she saw me she knew exactly what was happening so she stuck around for awhile to make sure I was ok. I have what they call simple partial seizures. I have fallen a few times from them but the majority of the time I get a shaky arm or leg, or weird sensations. The one I had in March I was doing my hair and I started having a shaky feeling like my insides were shaking then I got really lightheaded. I told my sister that I needed to sit down. As I tried to sit down on the floor I fell over. She said I had told her something she couldn't understand then burst out crying for like 30 seconds, then I was fine. It scared her big time cause she had never been around when I've had one. 

Today I feel better besides being extremely exhausted, which is normal after I have one. So I am resting as much as I can before I have to go to work. I just hope that they stay away.

The RA rollercoaster

I can't help but wonder what the next day is going to be like when I go to bed at night. Am I going to be able to get out of bed? Am I going to feel great? Will I need to have someone help me do my hair?  I never know how I'm going to feel or what is going to set off a flare. It's like riding a rollercoaster.

There for awhile I felt good, the pain was still there's but it was pretty tolerable. I thought the needs were doing a good job. Then bam! It reared its ugly head again. I woke up this last Sunday running a fever and feeling yuck! I couldn't raise my arms above my head cause my shoulders felt like they were being pulled from their sockets. Fingers red and swollen. Wrists stiff and not wanting to move. Excruciating pain in my feet, knees and spine. I found myself so exhausted from doing nothing that I had trouble staying awake. Then at night I hurt so bad that if spend most of the night up tossing and turning trying not to wake anyone up with my crying. 

I liked to be surprised but I really wished that I could get a warning that a flare was coming so that I could be prepared. Though I don't think there's anything that could prepare anyone for this. 

not going to slow me down

I've probably mentioned this before but here it goes again. Before I got sick I worked out 6 days a week I had worked hard to lose 50lbs. I felt great and had so much energy. Then I was hit by this sickness that left me hurting and drained of all energy. It frustrated me because I was no longer able to do things that were once easy for me let alone work out.

Then came my diagnosis and the first thing I was put on was prednisone, which those of you that are on it know it's an awful medication but at the same time it's a life saver. And is very helpful in reducing inflammation that is way more dangerous. For those that haven't taken steroids these are a few of their side effects: mood swings, hot flashes, sweating, acne, gives you a major appetite, moon face and weight gain. Now there's more but you get the point that it's not fun. Prednisone wasn't the only steroid I was on my rheumy also had me on kenalog injections.

Though they helped me a lot they unfortunately put weight back on me the last few months, which I won't lie really upset me. But a good friend helped me realize that it wasn't my fault and that my health and getting to feel better was the most important thing. Well I am no longer on steroids and its time for the pudge that they left behind to leave. Now don't get me wrong it's had nothing to do about my looks it's about my health and how I feel. I've been researching which exercises are best for those with RA. I have found that bicycling doesn't hurt my knees or feet so I've added that to my walking routine. Soon I plan on adding strength training to my routine, but that will revolve around which areas are giving me problems that day. Plus physical activity though it's hard for those with RA it's very beneficial. It can help reduce pain and stiffness, help give you more energy and help you sleep better. Wish me luck as I start my journey on getting active again.

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?

At least I don't look 80

 I was having a rough day and because of this I was barely moving. I'm pretty sure my grama could of done laps around me. My mom called to see how I was doing; I told her that I felt like I was 80 years old not knowing that my 8year old nephew was listening. He quickly responded, "Auntie at least you don't look like you're 80!" I couldn't help but laugh talk about seeing the positive in the situation.

The Irony

I love shoes, everything about them amazes me. Shoes have the power to change your day well in my opinion they do. I know if I'm having a bad day all I need to do is put on a great pair of heels and instantly I feel more confident like I can take on the world.
Like I've mentioned before I am an artist. I have been called a shoe artist because the majority my work consists of shoes. I love the fact that you can tell a lot about a person by their shoes but I also like  to portray how you can't judge a person by their shoes.
When I started to get sick I ended up having to come home from school because it was affecting my classes so it has slowed me down on making art. That did upset me because I was so close graduating.But then the other day I had something happen that hurt more than the pain of the disease itself.
The other day I was wanting to wear my favorite pair of heels, I was feeling really girly that day and I hadn't worn them in awhile so I figured why not. As I was putting them on, my feet were so stiff and painful that I had to take them off right away. I sat on my bed crying that moment was when I realized that this cruel disease wasnt just going to affect my body but also the things I love. Even though it hurt it made me even more determined to kick RA in the face!u

New challenges

Im back! I haven't felt well so I haven't written in awhile. I've been facing some new challenges. I've had another flare and the Plaquenil has been doing numbers on my stomach and has pretty much got rid of any appetite I had, resulting in me losing 7lbs this last week.
I've been looking for some type of medical coverage since I started getting sick. I'm considered high risk so I've been denied over and over. I was told to go to the Medicaid office to see if they could give me any information on where to try next. The lady told me the only way that they could help me was if I got pregnant. My mom was with me when this happened and she's not a very quiet person her sarcastic reply was "Seriously you're saying she needs get pregnant to get insurance? hmm guess we need to start interviewing candidates." Yes the trips to doctors, all of the tests and meds are expensive but there's no way I am getting pregnant just to get help. I found it hilarious that would even be an option though I have heard of people doing that.
I was told about a high risk insurance for people who are denied due to pre-existing conditions. I looked into it and found that the government had closed the program to new enrollment March 2,2013. So for now I'm still on the search for what to do....there has to be something I can do!

The Closet Disease

Ive come to realize that there are so many people who keep quiet about being diagnosed with RA. I believe that it is because they are afraid of the reaction that they will get so they find it easier and safer to keep silent about it.
I was asked why I'm so open about having this disease. Yes I've been told numerous times before I was diagnosed that it was all in my head, but I knew there was something wrong. When I finally received a diagnosis I was sort of relieved to now have an answer, but I was faced with a whole different reaction that I was not prepared for. I was bombarded with "But you don't look sick" "aren't you too young for that?" "the pain can't be that bad". It was then that I realized that people haven't really heard about the disease and the ones that have are misinformed. After all there's not much awareness that has been brought to it.
So it's not that I am wanting sympathy. I'm open about having RA because I personally know how it feels to be dismissed like its no big deal. It's like a verbal slap in the face and it can hurt worse then the disease itself. So if by my speaking out helps inform others; and help relieve the burden of those who are afraid to speak out because they're worried about how they'll be treated.....it's all worth!

My enemy returns

I love New Mexico! It really is a beautiful state, but the weather here can change drastically in a blink of an eye. We went from enjoying gorgeous 80 degree weather to a hard freeze in as little as a few hours. Normally I would be ok with it because cold weather was my favorite! Winter was always such a magical time of year for me. I guess it was because out here in good ol eastern New Mexico we don't get snow as often as other parts of the state, so I was always intrigued by snow. But that was all before RA and Raynaud's hit. 

Cold weather has now become my number one enemy! I spent the majority of last night crying, tossing and turning trying to find a position to lay in that did not cause excruciating pain. After what seems like an eternity I got tired of my bed so I manage to get up and hobble like a viejita to the living room to see if the couch was more comfortable. I did manage to get in a few hours of sleep before I was awakened again by it.

I am currently still on the couch under piles of blankets with a space heater right next to me. Oh and i mustnt forget the numerous pairs of socks I also have on and yet I am still freezing. I can thank the raynaud's for that. Raynaud's syndrome can be seen on its own with no known cause or can be a symptom of autoimmune disease. Mine is the symptom of autoimmune. Raynaud's affects the circulation in your extremities so it's hard to warm up and it turns your fingers, toes, and sometimes your ears and nose red, white, and blue. Very patriotic huh! But there is always a positive in every situation and my doctor ordered that I go shopping! Well maybe not in those exact words but he did say that I needed to wear gloves, scarves, hats and extra socks to try to stay warm....close enough!

Well I do believe it's time for a nap! :o)

New to all of this

I have read the occasional blog but had never thought about blogging myself until recently when a friend recommended that I give it a try. But blogging isn't the only thing I'm new to; about two weeks ago which happened to be a week before I turned 28 I was diagnosed with Rheumatoid Arthritis, carpal tunnel, tarsal tunnel, and raynaud's syndrome. My rheumatologist also is testing for lupus.                

I was kind of relieved to finally have an answer. I know your probably wondering why I would be relieved but you see I've been dealing with several health issues for the last 8 months. I even had to come home during my last semester of school so I had to postpone graduating. All this may have slowed me down but I refuse to let it stop me! I plan on kicking RA in the face!