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!

An Unexpected Setback

Hey everyone, hope your month has started off well. The first part of mine started off pretty normal, that is until my appointment last week to see my vascular doctor regarding my dialysis access in my left arm. I went to the appointment expecting to hear him say the access was ready for use, and the dialysis center staff could start using the needle to do my treatments. Well, that wasn't the case. They did an ultrasound of the arm, and after a while my doctor came in to talk to me and my mother. He proceeded to tell me my access had clotted off and was no longer functioning. Needless to say, my Mom and I were in a state of disbelief since they hadn't even used the access yet. He then told me, I would need to have surgery in 2 days to see if he could clear the clot and save my fistula (access). He told us that this was something that happens with most dialysis patients over time. This was not what I wanted to hear. If the clot couldn't be cleared he would insert a graft into my vein. I really had no choice but to have the surgery that Thursday morning. I prayed a lot between Tuesday and Thursday, hoping God would allow him to find a way to clear the clot and save my fistula access. Thursday morning came around quickly and I was a little scared, but I put everything in God's hands. We arrived at the hospital at 8:30 AM, and began surgery preparations. The nurse informed us that doctor was running behind in surgery and there were a couple of patients ahead of me. The anticipation and waiting was the worst part. Your mind has a chance to go through all the "what ifs". But once again I said I silent prayer and left it in God's hands. You see God is a doctor, a surgeon, and healer when you need him to be. I had nothing to fear...I knew I was in good hands. Finally, the nurse entered my room and said they were ready for me. I said goodbye to my parents and down the hall I went. Upon entering the surgical room, they placed me on the surgery table, and gave what the RN called the "I don't care medicine". They put on the oxygen, and I was out within seconds. When I awoke, I was in recovery and my nurse told me everything went well. My surgeon was able to remove the clot and save my fistula access!! He did have to place a Stent in my vein, because they were so small and causing the closure and decreased blood flow. I was thrilled but in a lot of pain. I was reunited with my parents after a short stay in recovery. I was then discharged home. I continue to give all praises to God for being with me throughout the surgery and making it possible for the clot to be removed. You see, when things seem impossible or you feel like you can't catch a break, God steps in right on time!! Thank you God for always keeping your loving arms around me!! There's nothing God can't do!!! Blessings to you all!!!

What A Summer!!

Hey my fellow lupies (others suffering with Lupus). Yes, I know I once again have fallen off the horse when it comes to blogging; but only for good reasons. I have had quite the summer to say the least. I am just happy to be here, alive and kicking and thanking GOD for continuing to let me see another day.

     Well let me get to the "tea". I left with my Dad to Pine Bluff, Arkansas on July 18th, for what was suppose to be a short "3 day trip". But as most of my lupies and ESRD folks know, if it's going to happen, it will. When I left that Friday, I was not feeling my best but felt well enough to make the trip. By the time we got to the hotel, some 5 1/2 hours later I was really tired and quite drained. I did my peritoneal dialysis as usual that night. The following day I felt really bad and was running a temperature of over 100 degrees. I laid in bed all day and didn't eat very much at all. I told my Dad I wasn't going to be able to make the event that night and that he should go without me. He didn't want to go, but I assured him I'd be okay until he returned. 

     Upon his return to the hotel room, he could tell I was in bad shape. I asked him to help me stand up to go to the restroom because I was nauseated. He immediately knew I was in trouble. He helped me to the restroom, and this is where my memory gets kinda jumbled up. I am not sure if I passed out and hit the floor but I remember my Dad rushing into the restroom to see what had happened. He found me laying on the floor and tried to get me up but couldn't. He immediately called 9-1-1, and the paramedics arrived soon after. I was transported to the hospital there in Pine Bluff where I remained in ICU for a couple of days. Little did I know my Dad had been in touch with my Mom who was here in Alabama. He also had been researching a way to get me transferred to the University of Arkansas Medical Science Center located in Little Rock. My Mom made it to Pine Bluff; my brother drove her and my Aunt there. She stayed in Arkansas with us, while my brother and Aunt returned to Madison.

     I remember being placed into the ambulance and arriving at UAMS. I do not remember much upon my arrival to the ER. From what I have been told, I displayed very shallow and labored breathing after my arrival there. My parents said one of the ICU physicians was observing me through the glass, and asked how long had I been like that. My parents said 2 days. This doctor told the ICU staff to immediately place me on a ventilator because I wasn't getting enough oxygen. I am not sure if they medically sedated me at this point or if I went into a "coma-like" state, but I was unconscious for several days and the staff could not wake me. Things continued to look grim for me from what my parents have told me. The doctors discovered that I had peritonitis, another bacterial infection behind my catheter, pneumonia, a fungal infection of the brain, and I became septic. I almost did not survive. But my parents never gave up and prayed along with friends, family, old co-workers, my church family (Little Indian Creek P.B. Church) my Aunt's church family, my second church family (Eagle's Nest Ministries), my lovely Sorors both back in Alabama and there in Little Rock, and many of the nurses and physicians caring for me.

     Well y'all all I can say is I am a living testimony, and that GOD heals. One day out of the blue I just woke up and sat up in my hospital bed. I was very disoriented but was so glad to see my parents there by my side. The whole time they never left the hospital, but slept in the 4th floor family sleeping quarters. When I woke up I was surprised I had a tube down my throat to help me breathe and a NG tube also. Once I saw my doctor, he said "well it's good to see you Ms. Rip Van Winkle". He said "it seems like you just went into a long, deep sleep". But I believe that was GOD's way of letting my body rest.

Here's a picture of me, that my Dad took several days after I woke up; notice the NG tube in the nose. But the one thing I had to have was a pair of sunglasses because my eyes were sensitive to the light in the room and outside the window. I was so glad when the respiratory department removed my breathing tube....finally I could breathe on my own!! Yay!! But little did I know this was the beginning of a long journey of recovery and several more weeks there in the hospital.

     We returned to Huntsville on August 20th, but I didn't get to go home right away....not yet anyways. I was taken to HealthSouth where I had to undergo occupational, physical, and speech therapies to help improve my balance, strength/endurance during activities and walking, my ability to concentrate and make decisions, my fine motor skills, and my speech. I also had to start eating more; something I had a hard time doing. I had a great rehab team: I am forever greatful for all their help. The rehabilitation was a long and tiring process. I got to where I was able to climb a few stairs, and walk with a walker. My balance was still an issue but had improved. My cognitive function also improved; my deficits decreased with rest. I still have trouble with my memory and concentrating on tasks for long periods of time. I was discharged from rehab on September 4th, and was finally able to return home. I was so excited to be home!! You never really know how much you miss being at home until you are not there for a long period of time.  Being back home was just the beginning of a long journey for me!!!

Happy New Year!!!

Hey everybody, hope you had a great first day of 2015. A New Year means a new me/you and a new beginning. Although I didn't have any plans on New Year's Eve, I got to spend the evening with family. Honestly, family times are some of the best times. I have learned over the past year the time spent with family is priceless and can never be taken for granted. Last year for me brought about another wake up call and made me want to get my ish together. Whether that's finances, business, family, friends, furthering my education,etc. Although today is officially the second day of the new year, I want you guys to think about this...even write it down. What are things you did in 2014 that you would have done differently? What are things you didn't do in 2014 out of a lack of fear, confidence, finances,etc. What are you planning to do this year that are totally out of your comfort zone? Believe me, I have several things I can list about the above stated questions. One of my major goals is to take the "what if..." phrase out of my vocabulary. It no longer exists. On my next entry, I will tell you a few more. Business wise...I am still working my Mary Kay business. I finished December pretty well, and am looking forward to a great January, one filled with new opportunities to meet new people and also grow my team. I'm Racing for Red...I will explain that in a later post!! Health wise, things are about the same..still waiting on a new Kidney. I am currently taking dialysis in-center 3 days a week, so pray for me. This is not an easy experience but one I will conquer. I'm just waiting on that all important call from Vanderbilt University Medical Center saying "come and get your new kidney". Oh what a day that'll be. I know God is in control. Talk to you all soon, and once again Happy New Year!