Wednesday, February 27, 2013

Really? Seriously?

I'm seriously frustrated today. After waiting almost a month to hear from the insurance company, I get a letter in the mail stating  "Remicade has been denied since Humira has not been tried".  I get in touch with my Rheumatologist right away, he calls me back within an hour. He tells me that Humira is a similar drug to Remicade ,except that I would have to inject it every two weeks. He goes on to explain the complications and side effects are much the same. We decide that Humira is worth a try. He is going to call in the prescription right away and will deal with the paperwork. At that point my anxiety levels are down and I am hopeful that I will be on a path to relief. 

Today we called our pharmacy to see if the prescription is ready for us to pick up. The pharmacist tells us "the insurance company sent it back and needs pre-authorization"! The same people who just denied Remicade in favor of Humira. Now I have to sit and wait while they make this decision again! A decision that has already been made!

I'm grateful that I have insurance, but this is ridiculous. The stress from chronic illness is enough, then you add to it people who don't know you, have never met you, and get to make decisions that affect your quality of life. I will wait, what choice do I have?

Thank you for listening. Now on with the day and on to doing something that will change the way things are!

Friday, February 22, 2013

Friday, Blog Hopping? Time for something new.

I thought I would do something different so this week I joined a blog hop through the Our Everyday Harvest  site. Two weeks ago I didn't know what a "hop" was. I'm still not sure I do now, but I'm there anyway! :)

Since it's my first one and I will be visiting and following all of the sites that I can. I hope you will follow my site as well. I thought I would start a new tradition? feature? and write one thing you don't know about me every week.

I would also like to thank all of the people already reading my blog, and I hope you will learn something new as well. I would love it if you would tell me something about you also.

This week my one thing is the last concert I attended: It would be Bon Jovi. I have been a fan forever! I was cleaning and came across the tickets I saved. (Yes, I saved them) It's Bon Jovi! 
Daughtry was the opening act that night, another awesome rocker, I had been a fan since the days of American Idol. (I don't watch it anymore).
Everything about that night was great except for the puking, underage girl staggering all over the place near us. It was a constant "duck" "run" "she's going to fall over you" kind of thing. I doubt she even remembered the concert the next day!


Wednesday, February 20, 2013

The Waiting Game, Confusion, Emotional Overload

This past few days has been a bit overwhelming. It started with blood test results from the Rheumatologist. My results are moving him to add a diagnosis of Lupus. He also mentioned Sjogren's could be changing to my Primary disease instead of being a Secondary Disease. This is based on major changes in results from when I was diagnosed 25 years ago with RA. I am still trying to process that information, it is not the first time Lupus has been suspected regarding me. In reality my life hasn't changed I feel the same physically. Emotionally I feel like I did 25 years ago when I was first diagnosed. A bit numb, confused, frustrated, alone and sad. I know I will get through those feelings as I always do. I just feel the need to write them down instead of shutting down. I have a tendency of hiding from the world and not talking to anyone when I'm in pain. This is my way of getting it out.

To top things off, I have been in a horrible flare since stopping the Leflunomide. The endless days of pain and swelling have been getting to me, I can almost feel the destruction happening to my fingers and toes. I feel uncomfortable in my body laying down, sitting up it doesn't matter I'm just uncomfortable and I can barely sleep at all. I'm playing a waiting game, waiting for my insurance company to pre-authorize treatment so my Remicade infusions can begin. In the meantime I'm struggling to function at any level. There is no pain medication, if I broke my leg I would be given relief from the pain. My body feels like my bones are broken yet I have nothing to ease this pain.
I am not a crier but this past few days I have cried a lot. That is when you know it is really bad. Some of it from frustration, more of it from the pain.

My husband has been trying to do whatever he can to distract me from this. It takes a toll on him as well. He gets very frustrated watching me in pain and being unable to help me. We spent the other night watching movies.Time like that helps me, it takes me out of my head for a few hours.  (If you haven't seen We Bought a Zoo, it is a wonderful family movie.)

I am trying to keep this blog as positive as I can but this is a blog about MY experience with Chronic illness. Right now is not a good time for me, and I'm going to be real about it. I believe in allowing myself to feel all the emotions I'm feeling and then move on to the next step. I will do what I always do, educate myself, be an active participant in my treatment plan and attempt to kick this in the butt. I have been here before and I will likely be here again, but in the end I will still be HERE.




  

Sunday, February 17, 2013

Under Construction

If you are visiting my page today, or maybe I should say any day. Please forgive the mess. As well as being new to blogging I'm learning as I go trying to design this page. Between brain fog a frustrated husband and chronic pain I may never get it finished so I hope you will bare with me. Feel free to give me any suggestions along the way too!




Saturday, February 16, 2013

Now for something completely different

What in the world wide web is a meme? Yes I remember when the Internet was called the world wide web. The interweb. What the heck? Sometimes ideas don't fly out of my head, when they do by the time I go to write, the thought is gone. Yay for brain fog! 

That is where the meme comes in. "Can't think of an idea for your blog?" A meme is a great idea! Okay then. Meme, who is he/she. Mini me? Meme from the Drew Carey Show. Add a meme! Please, I'm still trying to figure out how to tweet! Google plus? come on I can barely figure out Google regular! 

Maybe I should just ask my 4 year old grandson to take care of all my online business from now on! All of my grandsons can pick up an electronic device. Play with an angry bird. (Why would you want to play with an angry bird?), and BUY items from the app store. HINT: password protect your devices.


So for now, happy tweeting, googling, and face booking. Although I'm still not sure why people want to book a face. I'd rather book a vacation!

                                       

Friday, February 15, 2013

Sometimes Music is the answer to a bad day




Lyrics to:   Bring On The Rain - Jo Dee Messina


Another day has almost come and gone,
Can't imagine what else could go wrong.
Sometimes I'd like to hide away somewhere and lock the door.
A single battle lost but not the war.

'Cause tomorrow's another day
and I'm thirsty anyway
So bring on the rain.

It's almost like the hard times circle 'round.
A couple drops and they all start comin down.
Yeah, I might feel defeated,
I might hang my head,
I might be barely breathing, but I'm not dead.

No, cause tomorrow's another day,
and I'm thirsty anyway,
So bring on the rain.

No I'm not gonna let it get me down.
I'm not cry,
and I'm not gonna lose any sleep tonight.

'Cause tomorrow's another day,
and I am not afraid,
so bring on the rain.

tomorrow's another day,
and I'm thirsty anyway,
so bring on the rain.

No I'm not gonna let get me down,
I'm not gonna cry.
so bring on the rain.

Bring on the rain
Bring on the rain

Thursday, February 14, 2013

Valentine's Day and Chronic Illness


With today being Valentines Day, I wanted to share these quotes with you, they are a couple of my favorites. 
“I’m not OK, you’re not OK-and that’s OK.”
- William Sloane Coffin
 “Plant your own garden and decorate your own soul, instead of waiting for someone to bring you flowers.”
- Veronica A. Shoffstall

My Hubby and I generally don't celebrate today. We met 14 years ago on February 12th. We have chosen to do something special that day instead. Days aside, I think it is important to love each other everyday through all of the good and bad times. The last year has been an especially rough year for me. My husband has been my rock through all of it. I know I am one of the lucky ones, it was not always that way. I am remarried and didn't have a supportive partner in the past. I have been on both sides of the spectrum. 

Having a partner with a chronic illness is challenging, I know how hard it is. We have to change plans a lot, there are sacrifices made. I appreciate my husband everyday. We have tried to find things that we enjoy doing that don't tax me too much. He loves me no matter what I look like, even on days I don't particularly love what I look like :) Whether you are married or single with a chronic illness, the most important thing is that you don't start to hate yourself. Don't blame yourself for your illness. You didn't cause yourself to get sick, it's not your fault. Learn to take care of yourself and to love the new you. There are communities of people online just like you, including me who love you with no judgement. Everyday, not just today.



Rheumie Appointment, Infusion? trepidation.

My intention was to write the update on my Rheumie appointment the day I went. You can tell in the picture below I was exhausted going into it. That was Tuesday. Even now I'm still trying to process everything and fight the exhaustion. I walked in with an optimistic attitude looking forward to the appointment. My initial meeting with this doctor went great and I was hoping for more of the same. I wasn't disappointed. As usual I answered with the "'I'm okay" when asked "how I was doing". Why do I do that? I'm not okay. I'm so used to putting on a brave face in front of everyone around me, at times I forget how much doing that hurts when I really need the help.

                                          Hubby with his RPF hat before the Appointment


                                        Exhausted me RPF shirt

                                         My Doctor's Office


The Doctor looked at my hands in particular and could see I'm not okay. We discussed my Leflunomide, I told him it was making me extremely nauseated just as the Methotrexate had.
He went over my chart looking at my 25 years of medication use. Gold shots, Penicillamine, every anti inflammatory ever made, all of the standard first and second line drugs with no results. He said "Prednisone" I'm not really sure what he was thinking at that moment, for some reason I blurted out NO. I didn't realize I had done it in a forceful manner but he began to laugh and said "that was a really forceful NO, don't worry I wasn't going to give it to you". We spoke a little more and in the end decided we are going to start Remicade infusions. (An I.V. drip). 
I have avoided these Biologic medications for 25 years, partly due to the side effects and hoped I would never have to take them. Another reason being, previous Doctors felt Methotrexate was better for me no matter how sick it made me. With Remicade, I will spend at least two hours in an infusion center at periods of one week, then two, then six, then every eight weeks if all goes well.  I see the Doctor again in two months. I had my TB test which is standard when starting this drug. My old Rheumie had me do one before I started Methotrexate years ago. I am just waiting for all the paperwork to go through, and the infusion clinic here to call. I am nervous, I.V's are not my friend :)

                                         Part of the Pamphlet on Remicade I got
                                        


I walked out of the appointment and told my husband the same thing I am feeling now. On one hand I am relieved to have a doctor willing to treat me. I'm hopeful for a medication that might actually give me relief. On the other hand, I'm sad/frustrated that this disease has gotten to this point and these drugs are required along with the risks. I would rather have a chance to live with the risk, than die after a lifetime full of pain though.
I'm sure it will all be fine. It is just another step in my ongoing RA battle. I hope after 25 years and multiple drug failures this one might allow me to win this battle if even in a small way. 

Monday, February 11, 2013

Blizzards, Dogs, Cancelled Appointment

Today I thought I would be able to write about my Rheumatology appointment. I was actually looking forward to going. That's a first for me since I dread appointments for the most part. However, after my first meeting with this new Rheumie I was feeling optimistic. The other reason I was looking forward to going, was the Leflunomide has been making me extremely nauseated. It hasn't been doing much for me so I was hoping for some suggestions from him. Due to the unfortunate timing of mother nature, that didn't happen. By the way, whose bright idea was it to name it "mother nature".  (Sorry random thought) . Feel free to answer if you would like. I love commentary from all of you! 

We had an early warning of a potential blizzard, I think this year we have had 5 or 6. Not much has come of them most of the snow has generally missed us. I was well prepared to go my hubby had the day off, no problems ahead that we could predict. Boy were we wrong! We had at minimum 17 inches of snow in a 24 hour period. All of the roads were closed, my husband went to work yesterday at 4pm and was to be home at midnight. That didn't happen either. He was stuck at work till 8am. The next shift couldn't get in and his couldn't get out. Our dog was miserable all night, pacing and wanting out constantly. He loves snow, he loves eating it and rolling around in it. Unfortunately for him, right now it is too deep and he can't walk in it. I sure as heck can't lift an 80 pound dog. That would be one heck of a sight to see, me and my dog laying on a snowpile fighting to get back to the house. It was a very long sleepless night all around.

On the positive end, I called my Rheumies office this afternoon and they rescheduled me for tomorrow afternoon. I couldn't believe how quickly they got me in. I'm not going to complain though. I'm just going to get there, and I hope to be able to write a positive post about my second experience in the next few days. Until then, wherever you are stay warm, or cool depending on where you are. Just stay safe this has been such an odd year for weather and it has barely begun.


Here are a few pictures of the snowstorm for you to enjoy? peruse, look at.








I'm not sure I named this post correctly, a more appropriate title may be, rambling thoughts, lack of sleep.

Thursday, February 7, 2013

24 Hours Monster Trucks and a Flare

Do you remember the TV show 24 starring Kiefer Sutherland? It was one of my favorite shows. Well, I decided to do this post as sort of my 24 hours going to the Monster Truck show. I went with my husband, son, his girlfriend and my grandsons.
I took pictures from the time we left to the time and returned to make it easier for me to do this post, so let's see how this goes.



Hour 1 - The night before the show. Taking a shower and blow drying my hair because I know if I have to do it the next morning I will use up too much energy.




Several hours have passed since my shower. I watch TV for a while, read for a while. I have a normal night, normal for me anyway then off to bed I spend the night tossing and turning. I can't get comfortable. My back is sore, my knee is throbbing, I have a migraine and I am nauseated. After a sleepless night, I get out of bed, take my morning medication which increases my nausea and I end up on the bathroom floor vomiting. (please excuse my graphicness) Not a great start to the long day ahead! I can barely get water down but I force myself to and eat a couple of soda crackers. My eyes can't focus, all I want to do is go back to bed. I don't do that though, I have been planning to go to this event and I will not let this disease beat me again! 




It is now 2pm, three hours before we have to leave. I drag myself off of the couch and into the bathroom to try and put myself together. This time even with makeup on, I can see I look pale and tired. I have heard "you don't look sick" for a long time, today I think I look in the mirror and see tired eyes and a pale face and I think I do look sick. I spend a few more minutes with my hair, not long my hands hurt too much to fuss with it much these days.




I get dressed last, I need to stay in what I call my "comfy" clothes for as long as possible. Trying to find whatever will keep me warm in this 6 degree weather and still easy enough to deal with while I am out. The last item I have to deal with is my shoes. My feet usually start off okay in most of my shoes. However, after a short time they are so swollen my feet have no room and the shoes feel like they are suffocating my feet. One hour later I am exhausted but as ready as I am going to be. I grab crackers and water for the 1 hour trip to the city.




It is now 5:30 pm time to leave here is the first picture on the road. It is dark so you can't see much.



It is now approximately 6:30, the show doesn't start for about an hour and my hubby hasn't eaten. I am still not feeling well and am not really hungry. He picks up McDonald's, I don't eat that on the best of days. Dinner time is over and we head to the event.

6:45 we arrive here is the picture: 

After getting a bottle of water, we head to our seats, I start to panic our seat is wayyyy up there! I have to climb about 30 steps to get there. I know once I make it there I will not be moving for the rest of the night.


We took this picture before the event started.


7:30 The event started here are a few pictures from the event


The show is over, it was great! I stayed in my seat the whole time. Everyone enjoyed it. I hurt all over from the uncomfortable chairs we sat in and from not being able to stretch my legs but I had a great time flare and all.

Our next quest was trying to find somewhere to get food at 11pm since I hadn't eaten and didn't want to eat at the dome. We ended up at Arby's and I had a roast beef sandwich.

Back on the road again and home again at just about midnight a little over 24 hours from when I started. It took me several days to recover from attending the show, but I'm so glad I did. It was a great family event and I enjoyed myself immensely. The best part is my disease I did not allow my illness to beat me.




Saturday, February 2, 2013

Rheumatoid Awareness Day

Today, is a day to raise awareness. It is a day to promote understanding. 
There have been so many misunderstandings over the years partly due to this diseases name.  
It is severely underfunded and needs more money for research. There is no cure. 

In my 25 years, I have had people close to me act like it is not a big deal. I have sat at events and heard comments such as "the worst pain anyone can ever have is a toothache." In the early days of my DISEASE someone sprayed WD40 on my arm. I'm sadly not joking about this, I didn't have a voice at that time and they were insistent it would loosen up my joints. (I don't recommend it). 

It would be wonderful if because of this effort sufferers no longer have to hear, "I have arthritis too." It took me 25 years to start writing this blog due to that kind of treatment. When people hear "arthritis" they think it is no big deal. I can assure you Rheumatoid Disease is a big deal. 


I have waited 25 years for this day. That is the amount of time since my diagnosis with RA. I was diagnosed at 24 years old. That day my life changed forever. How do you go from one day being full of energy chasing small children, working crazy hours to being in a wheelchair?
You do if you are hit with full blown RA. Fast forward a bit, appointments, strange doctors with strange titles giving me all kinds of medication. Eventually I got on my feet. I have learned how to live with this disease, it is an ongoing process and it is so much more than just Arthritis.

I love the correlation to groundhog day, it is one of my favorite movies and I have often commented to my husband that having this disease is just like that movie. Living the same day over and over.

Please take the time to visit the Rheumatoid Patient Foundation website to learn more. Share the links. Donate. Take the time and learn about RD. We would all appreciate it.

One last note, I would like to thank my local newspaper, and especially Matt for taking the time to write a story on Rheumatoid Awareness Day. (See my previous post the link is there) When so many don't care, it's nice to know there are some who care to make a difference. To all my fellow Rheumies, Happy Rheumatoid Awareness Day!