Happy 36th birthday to me!!

I know it's been a while since my last post, but I've been dealing with a lot these past few months. First, let me say I happily celebrated my 36th birthday on yesterday Saturday May 30th. It was sort of a low key celebration. I was happy that our entire family went out for an early lunch at Libby's in Madison, located of of Hwy 20 right behind the McDonalds, and Hardee's.  At first I didn't think I would like it, but the food and the service was great. It is a family oriented restaurant serving some of the best old-fashioned Southern food in the area. I can't say enough about the staff, they were very attentive and made us feel right at home. Some of their famous menu items include catfish fillets, country fried steak, burgers, baked chicken, ribs, etc. some of their sides include mashed potatoes, onion rings, french fries, baked sweet potatoes, and so much more. Check them out for lunch during the week, you won't be disappointed.

     Now back to my latest adventures with lupus and kidney disease. I finally was able to begin using my fistula back in February. Yes, I was a little scared about being stuck in my arm with 2 large needles during every dialysis treatment. I mean really, who likes being stuck with a needle. The initial stick by far was the scariest, and to this day I still get an anxious every time go for my treatment. I was prescribed a cream similar to lidocaine that is suppose to numb the area thus making it less painful. Well....I beg to differ. It helps a little but not a lot. I asked the nurse practitioner about the "cold" spray that some people use instead. This kind of freezes the area, making the stick less painful. It also helps that I have a wonderful dialysis tech with years experience who is great at sticking me. I am still doing the 8 hour dialysis treatment at night 3 nights a week. It's not the best sleeping situation, as you are in a chair that reclines all night. It's definitely not the same as sleeping in your bed. But nocturnal dialysis is a lot less strenuous on your body and your heart. The rate of "pull" of fluid and toxins is a lot slower than regular 4 hour dialysis treatment. It is also the closest thing to having a transplanted kidney as a patient can get. I definitely can tell a difference in the amount of energy I now have, plus my lab results look way better. I have had one bad experience while at dialysis. One night I was stuck by someone other than my regular tech, and damaged my fistula. My machine continue to alarm throughout the night, thus not allowing me to finish my entire treatment. I went to my vascular surgeon, who immediately scheduled me for surgery the next morning to go in and clean out the clot and look to see if the stick may have  caused the damage. After surgery, the surgeon stated that the improper stick contributed greatly to my malfunctioning fistula. I then had to have dialysis that night, needless to say I didn't want to go. Things went better, as I had the RN stick me. I have developed anxiety every since that incident.

     As far as my lupus goes, it has been trying to flair up for the past month or so. It began with the rash on my hands, then the pain in my joints, and the constant fatigue. My rheumy advised me to increase my dose of steroids, something I don't like to do. I am also on the IV drug called Benlysta once a month. This drug had stopped all symptoms of my lupus for quite a while. I'm not sure what caused this recent flare up. It is getting better though, I am happy to report. If you or someone you know has lupus, you may want to mention Benlysta to them.

     Other than that, things are going well. Just tired of all of this rain, I am so ready for Summer. If any of you have any great summer vacation plans, please comment below. Since I am listed as active on the kidney transplant lists at 2 medical centers here in the Southeast, my travel is severely limited. I guess I will have to live vicariously through you all and my Facebook friends. Please feel free to post your vacation pictures anytime. One thing that I am looking at doing in the future is featuring a guest blogger once month on my blog to give their story of the their battle with one or both of the diseases. If  you are interested email me at nlbhones1979@gmail.com. Talk to you soon!

Happy New Year!!!

Happy New Year everyone!! Yes, I know I am a little late (LOL), but better late than never. Wow, can you believe it is the 15th of February already. Time sure does fly by. A lot has happened over the past months. First, I hope you all had a wonderful holiday season. This was the first Christmas in our new house. Is it me, or did Christmas appear to get here really fast? I mean one month, it was October, the next thing you know it was Christmas.

Here are a few of the gifts I had available for purchase. Check out my personal website, www.marykay.com/nbhones, for great gift ideas for any occasion. Our Christmas was extremely busy. I spent most of my time preparing for back-to-back Mary Kay Christmas Open Houses. Both were a success, but I learned one very valuable lesson when hosting an open house, plan early. I was trying to prepare individual gifts, plus hold a party. Wow...what a lot of work.

So...Valentine's Day has come and gone. Ladies and gentlemen I hope you all had a wonderful evening with your significant other. My time was spent at home relaxing, watching The Best Man Holiday. I must say, if you have not had a chance to see this movie, it is definitely worth watching. Yes, y'all, it will have you laughing and crying too!! No, I did not have a Valentine this year. Don't worry, I wasn't upset. I did read several Facebook posts about women finding out they weren't the only woman in their "man's" life. Some women, unfortunately discovered they were the "side piece". Ladies let me apologize for these guys who where not "Man" enough to tell you up front; rather than leaving you stood up on Valentine's Day. Guys...if you don't really want her then don't string her along, be honest and upfront. There's nothing wrong with being friends, but make sure that you both know what the other wants, and that you are upfront with your intentions. Ladies, the same goes for you too. Let's take this year and be honest in our relationships...communication is key.

Other than that, I have been debating on the issue of returning to school to complete my PhD. Yes, Dr. Nikki Bhones does have a nice ring to it. I'll let you guys know in my future posts what degree program I decide to pursue. I am thinking of going the online route this time, rather than actually sit in a classroom. I have to prepare myself for my upcoming Benlysta treatment this week. The intraveneous treatments are continuing to go pretty well, with no major side effects. Hopefully, this treatment will help burn the Lupus out, so that I can finally get a new kidney. Yay!!! That would be the best birthday present ever. I will keep you posted on my progress. Until next time.....

Benlysta Tuesday!!!

Today was busy for me. Today was my regularly scheduled monthly visit to my rheumatologist and monthly Benlysta infusion treatment. First, let me tell you all some of what my rheumatologist does. He is one of my physicians whom I see regularly. He is a physician who diagnoses and treats rheumatic conditions such as Lupus, rheumatoid arthritis, Fibromyalgia, and several others. Rheumatic conditions/diseases often affect internal organs such as the brain, heart, lungs, kidneys, and blood vessels. My symptoms range from pain and swelling of my joints, fatigue, skin sensitivity to prolonged sunlight exposure, anxiety, and sometimes depression. I have suffered from Lupus since 1995, when I was only 15 years old. Wow, imagine having that news given to you as a sophomore in high school. Just a little past info...but back to today. I saw my doctor as scheduled then proceeded down the hallway to the infusion suite. Imagine a room of about 9-10 recliners filled with patients, each hooked up to an IV receiving their prescribed medication. I must say, you can not find a more kind and caring group of nurses who continuously watch over me throughout the process. These group of ladies and gentleman, lol, know how to make me comfortable and relaxed. They also do a great job of making me laugh and making the experience as pleasant as possible. Wish I could name them, but I can't due to laws and regulations. But I will say "thank you for all you do to help me and others like me ". I sat down in my recliner, and my RN came over and first checked my arm for a good vein. Then came that lovely stick (OUCH!!!)but it didn't hurt lol. After my IV was placed I was off and running. The infusion process lasted approximately an hour and 15 minutes. Happy to report no adverse sidde effects. Until next time family.....