Where to begin?

Hello! So much has happened the last few months it is hard to know where to begin, so bear with me. :) My husband got a new job in April. It was with the same company that hired us on to keep us here in Omaha. He was unhappy with the job he was currently at and his old manager reached out to him and recruited him back. We both aren't too big of fans with the hospital system, but there are much more opportunities for growth in his career and we felt it was where we needed go. Well, because of the job change, this meant that we had to change insurance. Bleh! This also meant that I could not go to the MS clinic anymore because the health system that we are now apart of is a very narrow network and we can only go to any associated facilities. We asked around his office and was recommended some neurologists that were good. Okay, I thought everything will be fine. My MS is fine, were are good. Due to the insurance change, I wasn't thinking about it affecting my mail order for my Copaxone. The mail order company I was using didn't ever call when I have a few doses left and when I realize I needed to order, I only had 1 dose left. This happened and so I called to place my order. They could not fill it because my benefits changed. Ugh! It took a whole lot of anxiety, phone calls, more anxiety, more phone calls, trying to figure out who I need to order through etc! The rough part of this was we had ordered our plane tickets to go to Hawaii on May 24th - June 1st before all this happened. I wanted to be able to have my drugs on hand since we would be gone for 2 weeks (roughly). At this time, I also needed to get in with my new neurologist to get a new rx to get the order filled. There were many complications getting my records transferred from my old neuro to my new neuro. Are you feeling the anxiety that I had?! Luckily, when I called the new dr, I was able to get in to Dr. Liebentritt (I will call her Dr. L) on May 13th (I called around the 9th). Also because of the plane trip that was coming up, I only had 3 Xanax for the plane rides to take so I couldn't take anything to calm me down. It didn't dawn on me to call my PCP until the day before the trip. They filled it and was stocked up! Not sure why I didn't think of that before. Anywho...I was finally able to get my drugs a few days before my trip so I could start taking them again. Whew! However, this experience has made me wish and one a one payer system. Insurance sucks! If everything could be more simplified it could make people lives that much stress free. Everything depends on insurance...the lives of humans depends on what the insurance companies say they will cover! I will get to that later. Okay, let's see...we had a wonderful, relaxing trip to Hawaii to spend time with family members that live out there. Just what we needed to calm us down from the 2 weeks insanity. :) When we returned, I had to call Dr. L and let here know what facility to use to have my MRI completed. I had one scheduled with Nebraska Medicine to complete my 6 month follow up to see how my Copaxone is working. Since I can't got to that facility, I needed to go to another which ended up being Lakeside Hospital. We got that scheduled and completed on June 17th and had a follow up visit on June 24th. That visit, Dr. L went over my scans and I have 2 new lesions in my brain. That wasn't good news. They are lesions that appear to be 4-6 weeks old. That seems like the time that I was having major stress and anxiety due to the insurance change. Anyway, after Dr. L and I talked about the 4 MS therapy drugs that I have been on (Avonex, Gilenya, Tecfidera, and Copaxone), she said "There is nothing I can do for you". That hit me hard! "What do you mean there is nothing you can do for me?", I thought to myself. Since she is a general neurologist, I need to see a MS Specialist. CRAP!! WHAT AM I SUPPOSED TO DO NOW!! I can't, my insurance won't cover it that is why I came to see her. She could sense my fear/anxiety/frustration so she said that she would write a letter to the insurance company advising that I need to see a specialist because the drugs that I need to be on needs to be closely monitored by a specialist. I felt homeless after I left her office. Here I was with a neurologist that could no longer help me and a neurologist that is who I need that insurance won't cover. Where do I go? In the meantime, Dr. L referred me to a family practice doctor to get me established with a new PCP who would be help to help me with my anxiety. I now get to be on Paxil which slowly but surely seems to be calming me down a bit with my daily anxieties. I then called QualChoice which is my new insurance company to see what I could do to get approval for the specialist. I knew Dr. L was writing a letting and was supposed to send it in, but she needed to do that. I needed to fill out a form and attach the letter to it and fax it in to their dept. I went into Dr. L office to drop off that form, and Dr. L was just finishing up that letter as I walked in (this was on a Wednesday and my appt was the previous Friday). Regardless, we got both forms faxed to the appropriate place and was relieved that it was in. A few day later, I got a call from Dr. L office and they said that I was approved to go back to Dr. Zabad for one year! Yay!! That was reliving that it got approved. When I called to set up the appointment, the only thing they had available was August 20th or something, but I would be put on a wait list for anything that becomes available for anything sooner. I got in on July 20th. Dr. Z reviewed my scans with us and completed a thorough exam. She could tell my weakness that I have been having in my right side and asked if I wanted some steroids. As I write this entry, I am on day 3 of my 3 day solumedrol infusion. It takes about 2 1/2 hours per dosage. I don't mind it, it is a lot better that taking the oral prednisone dosage that I had to do about a year or so ago. At our appointment we also discussed the next options for MS therapy. They both are powerful medications but have great results. Both appear to be cancer medications. The first one is Lemtrada: HOW LEMTRADA IS THOUGHT TO WORK It's believed that relapsing MS can occur when immune cells attack healthy parts of your central nervous system. While it's not known exactly how LEMTRADA works, it targets the cells that are thought to cause MS. During treatment LEMTRADA recognizes certain immune cells in the body, including those thought to cause MS. LEMTRADA removes many of those cells. After treatment YOUR IMMUNE SYSTEM slowly begins to replace the cells that were removed with new cells. For some people, certain cell types remain below normal levels 1 year after treatment. The second option is a non-FDA approved drug that is different but is show some amazing results. It is Rituxan(rituximab): Rituxan is a monoclonal antibody (CD20, from mouse tissue) that binds to a receptor on the surface of B cells. These cells are then destroyed and their levels in the circulation are decreased. It is approved for use in the treatment of lymphomas, leukemias, and autoimmune disorders. A Phase II trial, completed in 2006, examined the effect of a single course of Rituxan treatment in RRMS, with two infusions of 1,000 mg each, administered two weeks apart. At 48 weeks, the number of active lesions was reduced by 91 percent and relapses were reduced by 58 percent. The drug was also tested in a study of 30 people with RRMS who had experienced continued clinical activity despite treatment with one of the approved disease-modifying therapies. Participants received two doses of Rituxan, two weeks apart, while continuing to take their usual medication. Results showed gadolinium-enhancing lesions were reduced: 74 percent of post-treatment MRI scans were free of gadolinium-enhancing activity as compared with 26 percent that were free of gadolinium-enhancing activity at baseline. There was an 88-percent reduction in the average number of these lesions. The rituximab is what we are aiming for but have to get insurance approval first. Since this is non-FDA approved, I think it will be harder to obtain that approval. If that is the case, then we will do Lemtrada. It is sad to have to have my insurance basically choose what medication to take instead of my doctor who would know what would be best. This system is so messed up and just not right. That is not how it should be!! Of course, both medications have their risks and side effects but we have to think about long term in treating my MS. Yes, both drugs are scary and risky but my doctor remind me that if I go in with fear and thinking something is going to happen it will. The mind is a powerful think and it is all mind over matter. I am young and have a lot of life to live and if these drugs are able to help me live a good life with this disease then one of these needs to be administered. This illness will not control me! I will control it and still have time to enjoy my life with my family.

Copaxone

Hello there my dearest of family and friends! About 4 weeks ago, I began the process of starting my new MS medication. It is Copaxone 40 mg. I had to have another MRI completed to have a baseline for when I need to have another. It showed that I had some new lesions and some inflamed current lesions. However, I am not or was not having any side effects or problems. I just wasn't on any medication. So...here's to beginning another medication! :) What is Copaxone? Copaxone (glatiramer) is a combination of four amino acids (proteins) that affect the immune system. I have to start giving myself a shot 3 times a week. It is a subcutaneous needle, so nothing too scary. :) I use an injecting pen so it doesn't even seem like I am giving myself an injection, which is nice. I rotate between my arms, legs, hips/bottom, and stomach. I don't get to do my stomach very often because of my stretch marks. I can't inject into one of those so I have only a few options to choose from on my stomach. The injection does not hurt, but the 20 seconds to 30 minutes afterwards are the bear. It's not too bad when I do it in my stomach, but everywhere else it burns, turns hot and red, aches, and all that sort of jazz. However, I think I will take the 30 minutes of pain instead of 1/2-1 day of flu like symptoms associated with Avonex, when I was on that. The other day, K started asking questions...like "Why do you have to give yourself a shot?". I panicked a little and looked at my husband. I know I need to tell her at some point what is wrong with Mommy, but I still am not sure what to say to her. My husband, being good with words, said kindly and gently "You know how sometimes people need to take medicine to keep them healthy and strong? Well, Mommy needs to give her these shots to keep her healthy and strong." I wouldn't have been able to say it like that. K took that with acceptance and went on her merry way. I was getting emotional because I don't ever want anyone to think I am sick and can't do anything. I want to be strong and "normal". I am so grateful for a supportive husband who knows exactly what to say when I can't say them. That is the point of this blog. One day I can give this to my daughter and she maybe will be able to understand what my challenge is in life.

Changes...again

Let's see...all has been going well in my life. I can say life is good. However, within these last six months have had a few stressors: Becoming CPT certified...which was a 5 hour 40 minutes exam in May, but a 10 week prep course consisting of class two days a week, Roxy having issues with her tumors, which led into us having to put her down, K finishing preschool, Graduation from Metropolitan Community College, and Vacation to Texas. Although these events have been exciting, sad, exhausting, happy, stressful, etc it has been an eventful few months. A few weeks ago, the area below my right cheek bone toward my lip became numb. It felt like I had dental work done and my face was still numbed from the novacaine that is given. Then on Sunday I started become weak and overly tired. My right arm and leg are the problems again. My leg muscle seems atrophied and is sore all the sudden, like I overworked it. I felt like I had a little bit of vertigo and was dizzy. My gate was unbalanced when I stood up and so I decided to send my neurologist a note explaining to hear what was going on. I asked her if I needed to do anything or if it was just something I needed to deal with as a symptom caused by all my stress. Well, she responded that it sounds like I was having a relapse. I went in yesterday and she did the exam and ordered an MRI for that evening. She called me a few moments ago and advised that the MRI shows new active lesions and that we need to change medications. Being on Tecfidera for 6 months should have prevented this from happening. So...back to square one. I was put on Prednisone to get me back to normal, which is consisting of 25 50mg tablets in the morning! AAAHHH!! It was so weird taking that many pills at once. I was scared to take them, not only because the taste is NASTY, but because taking that many pills at once would be like an overdose of medicine. I decided to do the pill steroid instead of an IV this time. I am still able to function and do all of my normal things, so this relapse is different than all the others. Of course, every episode that I have had these past 13 years of being diagnosed have been different. All is well, just another hump to jump over, but remembering to keep a good attitude, trust my doctors, and find the positive in all things will make this that more bearable. K is starting to get to the point of asking lots of questions, but she is not quite to the point that she would be able to understand things fully. One of these days I will be able to find the best way to tell her what I have and why things happen to me that don't with others.

Started Tecfidera

Well, yesterday I started my new medication. I will be on a gradual increase of dosage so my body can get used to the meds. I have started with one dose in the morning of 120mg and by the end of week 4 I will be on 2 doses of 240 mg, one in the am and one in the pm. My body didn't wait to show side effects. 4 hours of taking my first dose I experienced major flushing and redness of my face. My ears burned like I have never felt before. It was crazy! Today it did the same thing. Luckily, it last for about an hour and I return to normal. This side effect is the most common for those starting the medication and will hopefully decrease over time. No guarantees, but here's to hoping. I am praying and crossing my fingers that all will go well with this new medication because I sure do miss my other. This Christmas holiday has been pretty stress free and I am enjoying my new house and my old Christmas decorations in my new space. Shopping is done and so I get to sit back and hopefully enjoy this new ride with new medication. Merry Christmas!!

Time for New Medicine

10 months since my last post, but there was nothing dramatically changing in my health. To me, this is GREAT news! About a month ago, I received a letter in the mail from my neurologist, Dr. Thomas Diesing. It informed me that he was taking a position at the University of Nebraska Medical Center (UNMC) as the medical director of all hospital neurology services. Good for him! Unfortunately, this means he will no longer be taking patients and that I would need to find a new neurologist. I could stay at the same clinic, or he suggested Dr. Zabad at the MS clinic at UNMC. Before the letter, we had already heard great things about Dr. Zabad and wanted to get into the MS clinic anyway, but enjoyed Dr. Diesing. Anyway, Tyson knew some people at the clinic since he used to work at UNMC and was able to make me an appointment the following week to get established. Dr. Zabad is awesome and so intelligent when it come to multiple sclerosis. Since my last MRI was 3 1/2 years ago, we both thought it was time to get an MRI done to see how things are progressing, if at all. During our appointment, she reviewed my previous scans and it appears that there were two lesions on my spine that I was not aware of. This disheartened me a little bit and made me worry...which is what I do best! The MRI that was ordered was a brain, cervical, and thoracic scan (brain and spinal cord). This test takes 2 1/2 hours! YIKES! I was nervous, not for the scan itself because I have had MRI's before, but to be able to lay on that table for that long. Just getting a scan of my brain is long enough. I took a Xanax before the scan to help relax me. I should have taken two, but you live and learn, right? I was able to sleep some but every 7 minutes or so, the radiologist chimed in asking if I was okay and that he was moving on to the next scan. I would have done good during the whole thing except a week prior I started developing this cough. The first half of the scan went great, but the second half I had to click the button so that he could pause the scan so I could cough. Annoying!! I was taken out of the tube to put contrast into my veins then put right in. I had asked if I could sit up adjust and he advised against it because they want the comparisons to be as exact as they can. Talk about a sigh of disappointment that may have escaped my mouth! Back in I go, and about 20 minutes before it was over I was so uncomfortable I couldn't help but slightly move so that I wasn't in pain. I tried so hard to stay still but it was so hard!! Finally, it was over. As I sat up, my head felt so weird and I had to just sit there for a few minutes and compose myself. I walked back to the dressing room and looked it the mirror. Yikes! I was a site for sore eyes! :) 10 minutes passed and I looked normal again. That was the weirdest thing ever. I have an appointment on Oct. 15th to review my scans. Last week, I got a call from Dr. Zabad saying that there was been some changes to my brain and more inflammation in my spine. That is all she said, except for the fact that I will have to change medication. I am not sure of the extent of the "changes" and so I have been worried what was going to happen to me. I have been feeling so good and doing so great that I felt that no changes were going to appear. I love my current medication, Gilenya, because I don't have any side effects from it, and IT'S A PILL! Before my MRI, my doctor had given me some reading material in case we had to change drugs. She must have known or something! Well, I had three choices to choose from. The first choice was Tysabri, which is a monthly infusion drug, but this drug has the requirement to test the patient's blood before beginning therapy to see if a certain virus is present. Unfortunately, I have the virus so if I were to start this drug the chances of complications could significantly rise. So, my two choices are Copaxone and Tecfidera. Copaxone has been around for at least 12 years because that was one of the drugs of choice when I was first diagnosed. It is a 3 x week subcutaneous shot. Boo! Tecfidera is a BID (twice a day) pill. So...I'm not sure which one I am going to choose but have a few more days to ponder on it. One thing I have to remember is to live in the present, not in the future! I have been so worried about what is going to happen to me now that I know about the lesions on my spine. Will it effect me soon? I want to play sports with my daughter, play at the park, all these things that require movement and I might not be able to.....aaahh! I had to take a step back and remember enjoy today not tomorrow!

Still Hanging in There

I hadn't realized it has 7 months since I posted anything, but no news is good news right?! I am still doing really, really well. No problems or issues to report on. I did have some blood work done in October and my white blood cell count was 3.0 when the normal range is 4.5-12. If I recall I had a little stomach bug a few days before I had my doctors appointment. However, within this last year, my WBC count has been low; every time I get it checked. That isn't a great thing especially this time of year. I just have to be careful with all the sickies and to keep my hands washed and the carts rubbed down. :) For Thanksgiving this year, I was able to go to my parents house. It was SO WONDERFUL!!! On top of the holiday, my grandma invited me to come to her house to meet someone who is in the process of possibly being diagnosed with MS. She needed some support and assurance. I wished when I was first diagnosed that I could have had someone to talk to. I had a lot of people tell me what I should do, what things to try, and what things to avoid. I think I tried all of them and came up with something that worked for me. Everyone has their own MS. They have their own success and their own stories. I think things that work with some people may work for others, but it seems that there really isn't one common factor that helps everyone. The only thing that I could think of that may be similar is the need for Vitamin D. Of course, sleep and exercise are huge ones too (along with any other medical disorder) but Vitamin D seems to be the only additional supplement that doctors recommend. One thing that I tell people regarding their MS is to no to let it get you down. Yes, it may cause you to not be able do things like you use to, but do what you can. Don't focus on the CANT's, but focus on the CAN's. I have to remind myself of this everyday. I participated in a Fall softball league this year (which I try to do every year), and I especially have to remind myself this when I play. I can't throw like I used to, bat like I used to, and even run like I used to (this partly because I am not a 20 year old anymore). However, I still can play! I still can see to catch the ball, move my legs to try to get on base, and just have fun with this non-competitive team that I play with. Enjoy life to the fullest because you only have one life to live. Don't let anything get you down! Hugs and much love to you!

2 years and going strong

It has been a few months posting anything and I apologize for the time lapse. All is well in my world! In April I hit the 2 year mark being relapse free and it sure does feel good! There was only one time since I was diagnosed with MS that I went 2 years between relapses and that was in the beginning. So, instead of continuing on the path that I was on, which seemed like my MS was progressively getting worse, I feel like it is doing better. I am still REALLY enjoying my medication that I am on and love the fact that I don't have any noticeable side effects from it. Life is great! I walked my second 5K on May 11th with some girlfriends of mine and it was so much fun! It was the Color Me Rad race that I believe donated some of it's proceeds to the Special Olympics. It was a little windy and chilly, but that is just how I like it (minus the wind). I would rather it be cold than hot because I don't do well in the heat. In fact, this 5K seemed shorter than the other one. That or I am just feeling that good that it didn't leave me weak or tired. I'll take it! :) During the race we talked about doing the Mud Run when it comes up again, but I will have to get into better shape because that one involves more than just walking. It should be fun if I sign up. We shall see. I had a really busy 33rd birthday weekend this weekend. Friday we went to a Creighton baseball game that was a lot of fun. It was military night and so there were some special events that took place because of it. We had a flyover right before the game started by some B52 bombers (I think), a tribute to family's of Nebraska or IA that were at the game who had lost loved ones in the Iraq War, and then they had all the service men or women attending the game stand so we could all recognized and give our support. A friend we went with happened to be one of those men, so it was good to cheer for him to thank him for his sacrifice he gave and is giving. The game was followed with fireworks and a singer who sang to them along with during the list of names of those who lost their lives in the Iraq War from NE and IA. It was very moving and a great thing to experience. Saturday was filled with housework, mowing the yard, homework, haircuts, graduation party, and babysitting. Sunday we had our best friends over for my birthday dinner, and Monday was my birthday which I went to lunch with a best friend, worked, did homework, laundry, and then went to lunch with my husband. Today, I am completely exhausted and realized I did a little too much this weekend. When I feel good, I do a lot and it catches up with me. But, the weekend was worth it. It was so much fun and I wouldn't change anything. I really don't like sitting around doing nothing. I would rather do things that I enjoy then take a day or two to recuperate. :) Remember to live life to the fullest and enjoy every minute you can. You never know what the next day will bring.