Infusion day and doctor appointment update

Today was my monthly Benlysta infusion day. Things started off rough, as my blood pressure was running 142/100. I don't know why. I'm on two blood pressure medications, plus I took a Xanax before I left my house. Plus, I've lost more weight. Anyway, after my blood pressure came down slightly, they decided to go ahead and start my infusion. It took two sticks to get the IV in. I've been sick lately, so I'm probably dehydrated.

While I'm there, my rheumatologist always comes in to see me. I started off by telling him that I've been sick for the last three weeks with a kidney infection, mouth ulcers, body aches and overall fatigue. I told him I started taking 5mg of prednisone as soon as the mouth ulcers started. It's been a rough three weeks. My doctor told me he wants me to stop my methotrexate injections for awhile. He said that hopefully that may help with some of my symptoms. I hope it works, because I've been off it before and I got worse. Only time will tell. He also wants me to continue taking the 5mg of prednisone for another week then stop, and also do some light exercise, like walk around the block everyday. I told him I would try. I also got my flu shot while there. Ouch!

I scheduled my next infusion and doctor appointment for November 14th. A few days before my appointment, I have to go get my lab work done, so the doctor will have the results by the time I come in.

Well, that's it. I'm home now and resting, as I'm feeling dizzy and have a fever coming on. Planning on resting till its time to take Anthony to football practice.

 

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6 years ago today...

6 years ago today, the love of my life walked into my life again. Let me explain what I mean by "again", for those of you that don't already know. My hubby is my high school sweetheart. We were together in high school, then circumstances arose, and we went our separate ways after high school. Actually, we were only together for 4 months during our junior year. We were 16 years old. After we broke up, I cried for what seemed like forever! My whole senior year wasn't that great because I missed him so much. I always felt like he was my soulmate.

Then, in 1989 my sister and I were having a New Years Eve Party. It wasn't really announced, just a word of mouth kind of thing. Well, guess who got word of it? Yes, you guessed it, Robert. There was a knock at the door, my sister went to answer it and called me to the door. I was in such shock I couldn't talk. My sister invited him in, and once I warmed up to him, we had a good time talking all night. Yes, we talked all night long! He went home the next morning.

That same day, later in the afternoon, a dozen long stem red roses were delivered to my house. They were from Robert. The card read "Thank you. It was nice seeing you again". And that was the last time I heard from him for 20 years.

Then, on May 3, 2006 I received a message through Classmates.com that I had a message from Robert Wilmarth. I was so excited and happy! I couldn't believe it! One problem though. You have to have a paid account through Classmates in order to read messages. I was so pissed! I started calling all my friends to see if anyone had a paid account so I could open the message. No one did. Luckily, Robert didn't give up. He contacted me through MySpace.com. A friend of his had an account, and he searched for me through there and sent me a message. From there, the emails and phone calls began.

Our first face to face meeting was 2 days later on Cinco De Mayo. He surprised me by coming up to my work (I worked the night shift) and staying with me all night talking and catching up. We've been together ever since!

A couple of months later just happened to be our 20 year high school reunion. We decided to go together. When we got there, everyone was surprised to see us together and wanted to hear the story of how we got back together. We even won an award that night for cutest high school sweethearts. Awww!

From 2006 to 2008 we were inseparable. We went everywhere together, even traveled with my daughter's basketball team to San Diego, and, we've gone to Halloween Haunt at Knott's since we've been together. It's kind of our tradition thing. But, on July 5, 2008 we decided to get married and I've never been happier. I love my honey with all my heart and soul. I know we'll be together forever!

And... I know our life will continue to go on together forever. We love each other more then anything! As you can see, we do everything together and have fun doing it! This is how you know you're meant to be together!

I LOVE YOU ROBERT JAMES WILMARTH!

HAPPY 6 YEARS TOGEHER! MAY WE HAVE MANY MORE!

Today's infusion and doctor appointment

Well, after many weeks of trying to get everything worked out with the new insurance, I finally got my Benlysta infusion. It has only been 8 weeks since my last infusion. I'm supposed to have it every 4 weeks! Damn insurance!

Anyway, the infusion went well! It usually takes a couple hours.

The infusion is underway

During my infusion, my rheumatologist comes in to see me for an appointment. I talked to him about how I

have been feeling so crappy lately, and it just seems to be getting worse. He said it could be because I'm 4 weeks late on my infusion, but just to be safe, and help get me back to feeling somewhat better, he was going to give me some Solumedrol in my IV once the Benlysta was finished. I'm really hoping it helps! I've been so drained lately.

I also told him I needed a new script for my pain meds. It's a strong narcotic, so they have to give me a special script and I have to hand carry it in to the pharmacy. All my other meds I take are either electronically sent in, or come from my insurance specialty pharmacy. I also went to have lab work done before I left the building. Hoping my labs look good. So glad everything is in one building!

So, my next two infusions are already set up for May 31st and June 27th, the day before I leave for Hawaii. There won't be any problems or delays, as my authorization is good until June 28th. Oh, by the way, my doctor is going to give me a Medrol pak to take while on vacation so i feel good,and some Cipro in case I get a uti. My rheumy takes such good care of me!

Update: My rheumy called me this morning. He told me my white blood cell count is really low. He wants me to stop my methotrexate injections for two weeks to see if that helps.

 

Neurology appointment

Today I went to my neurologist to get the results of my MRI and to find out what my next treatment options are for my migraines. Of course, I again woke up with another migraine, so while I was there, my head hurt so bad I couldn't keep my eyes open. My doctor came in and we started talking about my treatment options. I told him that ever since I had to stop the Topamax, that I've had a migraine every single day! It's been a total nightmare! Anyway, he told me that we couldn't start Botox treatments yet, because the insurance won't approve it until I fail one more preventative medication for migraines. So, the next preventative medication I'm going on is Depakote. Depakote is usually for seizures or bipolar disorder, but it is now used to help prevent migraines. I'm not too thrilled about being on Depakote, but I can't live with these damn migraines any longer. He said that if I have any side effects, that I have to stop it immediately. Also, I have to have monthly blood work to check my liver.

I was also put on a Medrol pack for a week to help alleviate some of the pressure in my head until the Depakote gets into my system and starts working. While in the office, my head started hurting so bad, so my doctor gave me four nerve blocking injections at the base of my skull. Ouch! They hurt so bad. He said I should feel some relief by tomorrow, and if I don't, then they don't work. Well, duh! I so hope it helps, because my head is hurting so bad!

Oh, by the way, my MRI was normal. He said no tumors or anything, so that's some good news! I really don't need anymore health problems. I have enough as it is to deal with!

I go back to see the neurologist in four weeks, unless things get worse, or the Depakote doesn't work. I was also given more samples of Maxalt for when I do get a migraine, and the doctor is filling out his portion of the application from Merck, the maker of Maxalt, so I can hopefully get the Maxalt for free. My copay for the Maxalt was way too much! I can't afford it.

I think that's all of the update. I hope everyone has a great weekend!

I love you Nana!

25 years ago today, my Nana passed away. I will always remember the day, because I was on my way to see her when I found out. Not a day goes by that I don't think about my Nana! We were very close. I miss her so much! So much so, that I made sure my son, Anthony was born on her birthday. I had a scheduled c-section on August 30, 1999. He was meant to be born on that day, as I actually woke up that morning in labor.

I will forever love and miss my Nana!

Here is a poem I wrote to her the day after she passed! It is actually published in a book of poems.

I love you Nana!

Her hair was grey she was old

She'll love me always I am told

Her memory is here for me to love and cherish

And my love for her will never perish

I look at her picture and start to cry

I didn't even have a chance to say goodbye

Why did this happen why now

What am I going to do without her around

Someday I know that I will learn

To banish all those tears that hurt and burn

For there will never ever be another

As my own sweet loving great grandmother

Infusion day and rheumy appointment

Today was my monthly Benlysta infusion. During my infusion, I usually sit and play on my iPad, while I wait for my rheumatologist to come in and see me. Infusions usually take a couple hours, so he comes in anytime within those couple hours.

Anyway, we changed a few things with my care this month. Since methotrexate injectable is getting harder to get, and I can't take the pills, as they make me sick, I'm changing to a once a day pill called Arava. It's for rheumatoid arthritis, which the methotrexate was for. My rheumy said it shouldn't make me sick, and it should help me the same as the methotrexate. And, since I'm not able to get out of bed till noon everyday because I'm so damn tired and fatigued, I'm going back on my Nuvigil. I guess I need it more than I thought I did. The fatigue is so horrible that I can't even function anymore. I'm so tired of it(no pun intended)! So with these added meds today, I'm up to 23 or 24 meds. I need to do another count. I seriously lost count! I talked to my doctor about getting off of some of my meds, but he said we need to get me somewhat better before we can start taking me off any of them. Sucks!

Before I left the building where my infusion and doctor are located, I went to get lab work done. My rheumy wanted me to get some labs done to get a baseline and to see how things are going since he's changing some of my meds. He said he'll call me if anything's off. He's really good about that. I'm so glad I finally found a good rheumy. Took a very long time, but this one is the best!

That's it! I'm resting in bed for the rest of the day. Infusion day usually wipes me out. Have a good weekend everyone!