2 week update

K seems to be on the mend, which is great. She was a trooper for the week that she was ill. She was started on Tamiflu for the both of us. lol! She was on it for 5 days, but during that time I stayed in my mask to prevent any type of possible infection. I have continued with a minor cold and more fatigued. It also seems like I can't have a full normal day for this past week. I was doing a good friends hair and it was a took longer than my normal hair colors. We started with an "oil slick" color which included green, blue, and purple. It faded and was time to recolor to a more natural color. Her hair didn't want to bleach out so I had to do multiple applications. Toward the end, my hand had enough and I was just getting so weak. It was hard to stand up straight and difficult to hold on to the coloring brush. This seems to be a common thing while doing hair services that take 2 or more hours. But, ever since this particular appointment, I seem to be a lot weaker! On Wednesday (today is Monday), my right arm and hand was getting weak when I was finishing up work. It was hard to direct my mouse to the correct location. Then my face, specifically the corner of my mouth, right side, started feeling numb. It was kind of making me nervous. I don't know if I am tired or if it is because I still am a little sick or what it is. We went to the circus on Saturday (which was so much fun!!!) and toward the end of the event while we were at the Fun Zone I just didn't feel right. It was really hard for me to just stand there. I felt like I was going to fall over. This is how I felt while coloring my friends hair toward the end. T asked if he could go get the car and pick me up, but I felt like I needed to walk. Did it take me more time? Yes. Was I slow? Yes, but I could still walk! I can't just not do something just because I am tired. This may be because I am stubborn. I just don't want to give up I suppose. I feel like I just need to keep moving. I fear that there may be a day where I can't walk so I need to take advantage when I can. I don't seem like I am getting the best sleep, and I am not sure why. So, this may be the reason why I am so fatigued and weak. It is something that I am continuing to monitor. March is my next infusion, so maybe that will help? We are going to California in March so I am planning to schedule in for the end of March so it doesn't mess with my vacation. I will see how things go this next month and hope my fatigue improves.

Winter---Bleh 2/8/18

Hey!! I have been meaning to update this for sometime now, but life happens and it gets put on the back burner. It just so happens that I took the day off today to be 100% attentive to my sick child. Even though she is 7 and very self reliant, it is nice to take the day off because....I am not feeling the greatest either. We turned on a movie this morning and I had every intention of staying wake...it was 9:30am after all. But, I was the one who fell asleep and K watched it on her own. K woke up at 5:30am this morning in full tears saying her head hurt horribly! We took her temperature and it read 102.6. Her cheeks were nice and red. We both felt something coming on yesterday and it hit her like a brick this morning. The flu season this year is HORRIBLE!! Even for those that had the flu shot it is still hitting hard. Many elderly and children death across the country. Here it is February and we haven't got it, which I have been very grateful and worried about. I have been staying away from church, big events, or anyone that has been in contact with anyone with the flu. I am so glad that I work from home to protect myself from this virus. I still am immunocompromised, but I just don't know to what extent. My white blood cells are normal, but it's my lymphocytes that are 0 and have to stay that way while on my meds. Otherwise they need to increase the dose. This winter has been very, very cold. I am so over it. I can't seem to keep warm without turning my furnace up. The cold is so painful for me, as I guess I am heat/cold sensitive. That is common in MS patients. I just had an MRI done 2 weeks ago and it came back with no new lesions and all seems well. YAY!!!!! I get so nervous getting pictures taken of my brain because I don't want to switch meds again. It's annoying. Lol! But it is such a good feeling that inside of me looks fine. This matches how I am feeling on the outside. I am functioning well. I got another UTI this week. Dr. Zabad said if it keeps up I will need to go see a urologist. I actually asked my internal medicine dr, Dr. Northam, if she would just be able to handle this right now. I get them about twice a year right now, but if it gets to be more I will have to take more preventive measures because of my weakened immune system. I have always hated the winter months with my MS. I got diagnosed in the winter, went 3 years always having my major relapses in the winter, illnesses always go around during this time, it's so blasted cold here in NE, it's depressing, and so anytime between Jan-March can just take a pooey! :) Winter is BBBBLLLLEEEHHH!!! But, I have to go through it every year, so I am trying to find ways to make it be better. Once I find those things, I will be sure to let you know. Chin up and remember I love you!

Last Infusion at CHI!!! 9/7/17

Hello there! All has been well with my health these last few months. My last entry was actually written in March and it wasn't published. I got sidetracked which is normal, and now that it has been nearly 6 months I couldn't remember much of what was happening to be able to finish it. Anyway, I have had a UTI and or vaginitis or maybe even both within the last 6 months. This is a common thing and usually get a UTI once a year or so. Regardless, it seems I am doing well. The winter months are approaching so it is time to be a little more cautious. On a really happy note, Tyson was approached by a vice president at Blue Cross Blue Shield of Nebraska asking if he was looking for a job. This is a lady who has been friends with for years so they know a lot about each other. He was really looking but asked her for more information. Long story short, this is a job that Tyson has been waiting for for years!! The title is Manager of Reimbursement and he will be managing 6 people. This is great news for me and my health because will be on different insurance which means I can go to my neurologist and all the facilities that she works!! I also get to go back to my internal medicine dr again!!! This makes me so happy and will make the stress of going to CHI facilities when my neurologist doesn't have rights to those places. So, today I had my last infusion at Bergan Mercy! It actually went really well though which was surprising. The nurse I had, named Jess, was really great. My blood pressure to start with was 98/65. Since she noticed it was low and I told her that I usually get really low during infusion, she decided to add a bag of saline along with my medication. Again, after the Benedryl was administered I got groggy quick and fell asleep. During the whole infusion Jess said that my BP stayed between 100-105. That's pretty amazing! Why didn't the others think of that? Oh well. I am not sure if I have ever mentioned this before but during the first hour or so of the infusion, I get these weird jerking/twitching/spasm sensations of my leg. So, I can't really sleep the whole time because it's uncomfortable and weird. It doesn't hurt it is just awkward I guess. I don't know how to explain it. This infusion was about 4 hours, which seems quick, but I got to the hospital at 7:45 for registration and was all done with the infusion at 12:55pm. The same day that Tyson got offered the position we put an offer down on a house to use as a rental property. Whoa!! 2 new things....BIG things...happening in one day. I didn't think I was too stressed, in fact I was more calm as a kitten. :) This is proof that Lexapro works! :) Well, the rental property didn't pan out and all was accepted and negotiated with the job, so the following week I had been soooo tired! I guess I was really stressed. And, with what my blood pressure reading was this morning, no wonder I have been tired. Oh, se la vi! I am also assistant coaching K volleyball team with the Y which is SO FUN!!! I am really enjoying that. Then I am starting a co-ed softball league for the fall which I am worried I don't have the strength, so we will see. It's been a while. I am just happy I can play!!! Until next time. Love you so much!!!

Rituximab

I am so sorry that I never updated the events after July!! It has been in my mind every week, and just never had the time to get it updated. So, bear with me as I fill you in. :) At the end of July, we found out that my insurance company approved Rituximab!! YAY!! I did not think that was going to happen, but they came through and there was absolutely no issues. This was great news! I was scheduled to have my first infusion near the middle of August. At that time, I went and told my boss about the situation. I had not told them that I had MS. Only a few people that I worked with knew that I had it. I went into their office and told my 2 managers my situation and that the new drug that I would be starting would compromise my immune system. Immediately they said, "Let's get you working from home then!" I had hoped this is what they were going to say, but I wasn't sure. We had been told that no one was going to go home to work for the rest of year. I wasn't sure what I was going to do. Well, after getting the approval and my computer set up for me to bring home, I started working from home on August 15th. On August 5th I had an appointment with my PCP for a follow up for my anxiety medication that I was started on. At that visit, I told her the new drug that I was going to be started and she had suggested that I get a pneumonia vaccination. I was a little leary about doing that as usually I talk to my neurologist first. But, she reassured me that it was highly recommended. I received the vaccination feeling okay about it. Around the same time I started working from home, Angela with my neurologist office called to confirm everything to set up the time to start my first infusion. At the very end of our conversation I remembered to tell her that I received the pneumonia vaccination. She then told me we would need to wait to start my therapy in order for the antibodies to get to their full potential...or something like that. BUMMER!! So, I had to wait 3 more weeks to start my therapy. September 7th was the day that I started my first treatment of Rituximab. This is a 5-6 hour infusion that has to be done at Bergan Mercy Hospital. I was a little nervous going in because I had completely no idea what to expect. I got checked in and went to the infusion center. Before they started the rituximab, I had to take some Tylenol and they give me IV Benedryl. This is to counter act the side effects that would likely occur with the meds. I tell you what, I don't do well with regular Benedryl, but the IV stuff is a kick in the pants! They put it in real slow but by the end, the room starts to spin and I can barely talk. It basically put me right to sleep like the regular Benedryl does. I just sat/layed there for hours. Tyson was able to come visit me since he works just around the corner from the hospital. That was nice to have him support me like that. By the time my infusion was complete my blood pressure was really low. I usually have a low reading, but this was 92/59 I think. I wasn't real dizzy, but the Benedryl was still making me so tired so I was able to just go home and sleep. September 14th I was required to have a steroid IV treatment. Home health came to my home and completed this for me. I had a friend come take the IV out and it was as easy as pie, except for the side effects of steroids. lol! September 21st I was required to have my 2nd dose of the Rituximab. Same thing that happened on the first treatment except I wasn't nearly as fatigued as the first round and my blood pressure was a little better. I started the therapy at 116/70 and ended at 95/60. I guess the drug can have that effect on some people. I had some amazing support with not only my awesome husband but with friends that I work with. They would text me to check on me and make sure all was well during my therapy. My work has allowed me to call in during meetings with work so I don't have to expose myself to the germs in the office. If I do go into the office, I make sure I wear a mask and sanitize the desks that I may sit at. For Christmas this year, I went home to Utah to surprise my Mom for her 60th birthday and my Dad for Christmas. It was so incredibly awesome but I was nervous to fly on a plane and be exposed to more germs. I sanitized everyone's hands a few times a day and even took some Lysol wipes to clean the seat I was going to sit in on the airplane. I have been doing pretty good since Septembers infusion. On Tuesday, Jan 10th I decided to take a break and take a nap. When I woke up, something didn't feel right. I felt like I was getting sick. :( I took some DayQuil since I still had to work and didn't want to be more sleepy. That night I went to a movie with some girlfriends and my pulse was through the roof. I had no idea what was going on. I came home and went to bed, but I slept horrible that night. I had a cough and a fever and I was so achy! I called into my dr office to see what I can do and they had me come in. They ran an influenza test but it came back negative. She treated me with Tamiflu anyway and sent me on my way. I came home and went to bed. That night was worse then the first. I still had a fever and was more achy than the first. I was shaking and I couldn't control it. I have lost my voice because my cough is so hard that it was irritating my throat. Tyson got another blanket for me and let me snuggle next to him to get me warm. I was able to calm down and go to sleep. That morning, I took some AlkaSeltzer and tried to get more sleep. It didn't do much for me. It was an off and on sleep. But, I just felt miserable, horrible, like I was dying. :( Or as my Dad would say "Like a bear chewed me up and pooped me out over a cliff". I called the dr and they said to just drink lots of Gatorade and IBProfen. My friend who dropped Kayda off from school also dropped off some Gatorade and IBProfen, just what the dr ordered! Her husband is sick with the same thing. Well, as soon as I drank a whole bunch and had some pain meds, I felt so much better! I still had a fever but I think I was dehydrated. Here we are today, and I am still sick with no voice, but my fever broke yesterday so I am feeling a little better. So, I am on my journey of being immuno-compromised. I need to be more careful, especially this time of year. Every 6 months I will receive an infusion unless my blood work states I need to have it more often. I get my blood work done every month to my sure my lymphocytes are at the appropriate level, which is 0 or close to.

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.