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.