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.

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.

Keep Going

Well, I did it! I signed up for another 5K. I will be doing the Color Me Rad on May 11th and I can't tell you how excited I am. :) Again, I will be walking it with a bunch of close friends, but it will be so much fun. Doing one race has got me into this weird kind of mood. I mean that I feel like I am progressing on being more confident in doing things that I think I can't. I can do them and I am trying to give myself more credit. So, I am continuing to move forward! I love it! I do have a little story to share that impressed me a bit. The end of January marked 11 years since I have been diagnosed with multiple sclerosis. I can not believe it has been that long, as I feel like it was just yesterday that I was in Georgia. Anyway, I am currently taking and English class and we are writing a summary response paper. We had to read a few little short stories and pick one to use for our paper. We have to summarize the story in a paragraph and then respond to it in 2 paragraphs with a story, or develop an argument, or contemplate the theme, etc. Here is my paper: ***Ms. Dianne Kelly writes a personal story titled “I Ran Away Many Times” where she shares her feelings on her experience finding her own measure of peace. She had to go through some tough times while growing up, but came to realize that she had nothing left to lose but everything to gain. I can relate to this story because I had to find my own measure of peace after being diagnosed with multiple sclerosis. Dianne explained that when she was a kid she would run away and sit in a tree for hours. She kept running away, and her parents never knew where she was. At fourteen, her parents signed custody of her over to the court, and she went to live in a farm house with other troubled teenagers. The rules were strict which made it hard to keep running away. As part of one of her punishments, she had to sit in a chair for sixteen hours a day for one week. This was her breaking point, and she realized that having nothing left to lose is the same as having everything to gain. She found a measure of peace at that moment. At some point in our lives, we all have to find some sort of peace with experiences going on around us. Eleven years ago, I was living across the country away from family members. One Saturday morning, I woke up and found myself not being able to move the right side of my body. I woke up my roommate and had her take me to the hospital as quick as she could. I thought I was having a stroke. Twelve hours, a CT scan, a MRI, and many blood tests later they let me go home. Monday I returned to the neurologist that saw me in the emergency room. That was the day that I was diagnosed with multiple sclerosis. At that moment I thought my life would be awful and completely different with this new illness. I thought I wouldn’t be able to walk or run, play my favorite sports, go hiking, and every other thing that required the full use of both legs and both arms. I couldn’t stop crying and felt completely alone. A few days later, my mom came to get me and my things to move me back home. During that week it took a lot of family support and prayers to help me through it. I had to find my measure of peace. After a few weeks, I realized I had two choices I could make. I could sit and be depressed with my illness or I could fight to strengthen myself to be normal again. I found my measure of peace when I decided to fight. Finding peace should be important in everyone’s lives. The author was able to turn her life and attitude around and I was able to relate to her story from my own experience. Finding peace in any difficult decision or experience can make life worth living.*** In class, we do what is called workshop. We get in group and read each other's stories and help that person correct errors or add any additional information needed. One guy read my first paragraph, looked at me with a puzzled look on his face and said, "Really!?" He stared at me for another second, a "Huh" came out of his mouth and he continued reading my paper. At the end, both guys reading my paper had nothing to say. It really does throw people back when they find out I have MS because I don't seem to fit the part. I wasn't quite sure what to think of his reaction and in fact I was kind of embarrassed. However, I guess this is good for me because 1. I feel like I am doing good (and my husband too) at taking care of myself or 2. God is kind and merciful and is keeping me healthy enough to feel like normal but still have challenges and 3. I am just lucky, I guess. Whatever the case may be I am okay with it because I found my measure of peace so long ago.

Today was the day!!

Today was race day!! Was I able to train to be able to run a mile.....well, not exactly. Unfortunately, every time I trained on my treadmill, I would walk a mile to a mile and a half and that evening I had a migraine. It wasn't worth it to me. So, I decided to make sure I stayed as active as I could, park a little further from the doors of the grocery store, do more things with K, etc. However, by not "training" I was really nervous that I was not going to make it; that I wasn't going to finish. I had dreams of the race and I was having a little bit of anxiety about it. It was supposed to be a fun race, but this was my first race and I wasn't sure what to expect. I also did not want to appear weak and did not want to slow my friend down. Luckily she told me that she was not going to run due to her bad knee, and her other friend that was joining us had no desire to run either. I was okay with this. T was going to drop me off and go to his office to hang out for the hour in case I wasn't able to finish and in case I needed him to come get me. Yesterday at our packet pick up, my friend told me that she would drive me and we could stop whenever we needed to. She said she would take care of me and not let me overdo myself. What a friend, eh?! I wanted to finish more than anything and wanted to be able to say I did it. She kept telling me that I wasn't giving myself enough credit. She was right, I wasn't! Race day came and with all our fun accessories, I was no longer nervous and I knew I could do it! The atmosphere was AMAZING!! There were so many people. The runners brought their kids, dogs, and even handicap people came in their wheelchairs and other medical equip. to help them "run" the race. Half if not more of the runners walked the race. I was worried that I would be last...silly me! I also realized that the cooler the weather is, the better I do. Winter races may be my thing! :) When I get to hot, that is when it is harder for me and my limbs to stay strong. This race was a lot of fun and I need to stop these negative thoughts and go enjoy the fun without worrying about my health. I do need to give myself more credit! I have one life to live so why not live it being happy and doing things I want to do instead of worrying what may happen. I finished in glory and with more energy to spare! :) Merry Christmas!!

I AM GOING TO DO IT!

In January 2012, I had made myself a goal that I would run a mile. Today, November 15th, I have yet to even attempt to run a mile. I am not much of a goal person. Usually if I say that I am going to do something I do it right away instead of giving myself a year because I always put it off. Well, today is the day. :) My friend had asked me if I wanted to run in a race called The Ugly Sweater 5K. It is through downtown Omaha and everyone puts their ugliest sweater on and runs! I had helped one of my best friends put on a race a few weeks ago called The Cupcake Challenge and everyone had to eat a cupcake at each mile. I maned one of the stations and watched people race and eat a mini cupcake. It was a lot of fun and actually got me motivated to run in a race like this. All year my family members and friends ran in 5K's that were Color Me Rad, Mud Run, and all sorts of different runs that I was jealous that I didn't participate. I always said "there is no way I can do that"..."that will be too hard for me"..."what if I can't make it?"..."I don't want to be seen as weak" and all sorts of excuses. Well, no more! Why limit myself to what I can do and can't do. I at least have to try, right? I see so many examples where people's ailments don't hold them back. So, I am starting tomorrow to "train". I looked up online and am doing a "Couch to 5K" program to help me try and get the strength to walk/run 3.1 miles. 1 mile was my goal to run so if I can do that in this race that would be AWESOME. I will then walk the rest...or maybe run more than a mile. We will see. I have put my husband in worry mode but I told him not to worry. I will pace myself and not overdo myself and not try to win...but to finish. I have passed my tired weeks and am back to normal, so let's hope the energy stays with me to train. I have until Dec. 16th! Wish me luck!

Just plain old tired

These last two weeks have been a little tough. I have just been, well......tired. I think I have had to take a nap every day since my last post! And, it usually is an hour nap, but it could have been longer. I am so grateful to have a job where I still feel like I need to get things done by a certain time to keep me motivated to get up from my nap and not sleep the afternoon away. AND...K wakes me up from her naps so she keeps me from sleeping all day too. :) On the 3rd of this month, I was finishing up work and getting ready to go to school. All of the sudden my eye started to do some funny things and I started to get nervous. Then, all of the sudden, I could not see out of my right eye. If I looked at K straight in the face, I could not see the right side, I could only see one eye. I started to get more nervous! As time went on, maybe 20-30 min, my vision started to make it's way back. It is really hard to explain the feeling of when that happens. It is like my vision twinkles and I have a weird sensation. From when the whole problem began to when I got it back was only about 45 minutes. I had decided to stay home from school because I didn't feel well and didn't want to risk driving at night. T took K to his church responsibilities that night and I laid in bed and watched tv the rest of the night. When T came home, we put K to bed and I got ready for bed myself. I looked in the mirror and my right eye's pupil was dilated and my left eye was normal. It was the freakiest looking thing ever and I am sure T would agree. :) I called my neighbor since she is a nurse and asked her what she thought. She said (along with T) to sleep it off and if it is still like that in the morning to call my neurologist. So, I went to bed and prayed I would wake up in the morning. I almost thought I was having a stroke or something. Well, I woke up and everything was back to normal. I called my neurologist anyway to inform him of the occurrences and he said it was signs of a migraine. I have had the same vision phenomenon occur twice in my life that I can recall that both had a migraine follow, but I had never had the pupil dilation that occurred with it. I did not have a huge migraine that I actually was waiting to happen. Either my pain tolerance has increased due to the fact that I have headaches all the time, or I forgot about the pain since I was too scared something else was happening. Regardless, this may be the reason I have been so tired lately because of this event. This is what I am associating it too. I will take this over an exacerbation any day! But, two days ago after a nap I woke up and I felt fantastic. I actually had energy to do things! It was awesome. Yesterday was just as fantastic and I don't think I have taken a nap all weekend. So, I am back to the top from being down. All is well and I am so grateful for a wonderful husband and daughter who always just seems to know when to just let me lay on the couch!

I may have MS, but it doesn't have me!

The last 3 days I have been.....well...TIRED!! It is almost like the tired that women out there who are pregnant in their first trimester tired. Ugh! I have no energy to do ANYTHING. (PS. I am not pregnant) Now, even a normal person experiences these days of tiredness. I never know if this is a normal thing or if this is an MS thing. MS is so hard to figure out sometimes. I was talking to my sister yesterday and she is just as tired. She asked why I was tired, and I said I don't know. There has been no stress, I didn't over do myself recently, the weather has been BEAUTIFUL so I didn't get overheated...I am just tired. Monday, I had no energy but still got out of bed and did things. Tuesday was even worse. I don't think I even got out of my pajamas and I was barely able to muster up the energy to get off the couch when my daughter had to go potty. I did get a 1-2 hour nap in both days and that helped along with getting to bed early and sleeping all the way through the night. Of course, I work from home so I was able to get my 2-3 hours of work in, in increments of 40 min or so. Today I feel better and felt like I could get some stuff done. I always feel so guilty with my tired days. Before I had Kayda, I went to a National MS Society seminar and we watched this video. There was a woman on there who was laying on a couch saying whenever her son wanted to play, she said she couldn't and that she was too tired. I told myself that if I had children I wouldn't never do that and that I would play with my child. Well, I think of that woman ALL THE TIME. And when I am tired if my daughter wants to play or do something I try to suck it up and do the best I can to play whatever she is wanting to do. Yesterday, it was a "here Kayda, want to watch a movie?" day. The nice thing about that is she LOVES to watch movies! I still feel guilty about sticking her in front of the tv when I have no energy to do anything, so if there are any ideas out there for alternative forms of entertainment, I am all ears. :) I found this little quote that I posted to this blog that says "I may have MS but it doesn't have me". I am trying every day to live by that because I have a life to live, why not live it the best I can and not miss anything because of my MS.

Cleaning

Tyson and I decided to create our own little job chart. :) Cleaning the house all in one day is literally exhausting. I tried to do it in one day but it really take a lot of me. It would turn out to go two weeks in between cleaning the bathrooms, dusting, sweeping and mopping the floor. I am pretty good at vacuuming because it doesn't take long and it helps make it feel like the house is somewhat clean. Well, I saw on Pinterest to spend 15 min. a day to always have a clean house. I shared the idea with Tyson and he is totally on bored. I had made a magnetic calendar that I was going to use for meal planning, but I have had it for almost a year and didn't end up doing it. It now just sits in the corner of my kitchen and I just use it for a calendar and for birthdays. I made up some chore strips and every day there is something listed. Tyson and I are "scheduled" every other day and it is working out fabulously! We are just doing it M-F and if we miss a day doing our chores for the week, Saturday is the day to do it. :) Once Kayda gets old enough, she will get thrown into the mix with us. So Monday's are vacuuming the whole house, Tuesday is dusting and windows, Wednesday is master bathroom, Thursday is main bathroom, Friday is sweep and mop. Of course we still do the daily dishes and cleaning the counters and weekly or bi-weekly cleaning of walls (depends on how much dog goober is shaken on them) and other things we find...but this makes me feel like our family is all into this together! We are a team and it's a team effort. Thanks Tyson for being such an AWESOME husband who loves to cook and clean. :) He really does make sure I am staying healthy by helping out when I don't have the energy!

Sports, Pregnancy, and New Medication

From 2003-2009, there were some up's and down's and a few relapses in between. For the most part I stayed pretty healthy. It seemed that I would have the hardest times in January. I attribute this to the stress of the holidays so when January comes around and I have time to take a step back my body says "Okay there darlin', you did a little too much!". However, I had to learn to realize that holidays shouldn't be stressful so the whole "January" thing only lasted a few years. My main symptoms were weakness and tingling in my arm and leg and fatigue. I also didn't have the strength to do many things and my coordination was off. I used to be a softball player. I still play in co-ed teams today. Unfortunately I can't do what I used to. When I throw short distances, sometimes I throw straight into the ground. Even when I am trying to throw a frisbee or skip rocks while at the lake, I can't seem to have that not happen anymore. It is the weirdest thing as I used to LOVE softball, ultimate frisbee, and skipping rocks at the lake with my siblings. Now, I try and fail and it is funny at first but I get frustrated and just stop and watch others. When I play softball I make sure I play outfield because I seem to be able to judge better throwing far distances. Although it is frustrating at times, I am still VERY grateful that I can still do them (if that makes sense). So many times I speak to people who have it a lot worse than I do, there is nothing better than the things that I can do. I had dreamed of the day that I was going to be a mother. When I was diagnosed with MS I had no idea how that was going to affect my chance of becoming one. How can people do it? How do they have the strength, energy, and money to have a child? Multiple Sclerosis is one of the most expensive medical conditions to have, so I was afraid of not being able to afford it. Many people say you can never afford having children...so don't wait to have money because then it will never happen. :) Anyway, with discussions with my neurologist and other people, women with MS seem to have awesome pregnancies. It seems as though all symptoms leave while pregnant and if women breastfeed, the chances of relapsing decrease. After hearing this information I was ready to do it! :) I seemed to be at ease. The trick is that a patient is advised to stop their medication 2-3 months (I think) before conceiving. This would be fine and dandy if you knew exactly when you ovulated to get pregnant. I stopped the Avonex to get pregnant but my cycle is a bit messed up. I also have a condition called polycystic ovarian syndrome. We tried for 6 months using Clomid and nothing. We went to an infertility specialist and the doctor advised that I would be at a very high risk at having multiples. With having MS and multiples it would be disastrous. We could abort some of them for health reasons, but we both agreed that the option to do so was not right and we would be uncomfortable doing so. Our next step was adoption. Back on the Avonex I went since our decided path was to adopt. Roughly 6 months later, a girl that we knew from church asked us if we wanted to adopt her baby. She would deliver January 2010. We were ecstatic! I can't tell you how awesome it was to feel that we were going to be parents. What was even more awesome, I found out two weeks after she chose us that I was PREGNANT! October 2, 2009 was the day that I found out I was pregnant and the day that I stopped Avonex.

Was I going to have 2 babies then!? Could I do it? I got really nervous and felt uneasy about it. We told the birth mom we would still be happy to take her (it was a girl) and she still wanted us to. January came and the birth mom decided to keep the baby. Somehow, I knew that was going to happen as it just didn't feel right. June 2010 our sweet, adorable, precious, healthy little girl was born and she has been a blessing since. All of those things people said about MS and pregnancy was right. I had the BEST pregnancy (I think) and I think I have the BEST daughter. She was meant to be ours.

I was able to get the sleep I needed since she was such a good sleeper and napper. I never felt sleep deprived (from what I can remember), and all was well. I nursed for 10 months and decided that since I had been off my medication for almost 2 years it was time to start back up again. I got optic neuritis when K was about 10 months old so that is when I decided to stop nursing and since I had to be put on steroids. I developed this condition once before and it is no fun and painful and I was scared I was going to loose my eyesight. When I had this condition with K, I was really scared I wasn't going to see her again. Luckily, steroids have been made to correct the problem and I was able to get my vision back to regular. I was on Avonex for maybe another year and my doctor and I decided to try a different treatment. I seemed to have some sort of relapse once a year. My MRI also showed that the lesions were getting bigger and more of them. I started on Gilenya or Fingolimod. This is one of the first pills to take. YAY!!! No more shots for me!! :) I was really nervous to begin this treatment as it is so new and really scary side effects that could occur. But, I am happy to report that it has been 1 1/2 years since my last relapse and it is AWESOME!!! There are no real side effects to the medication and it is a pill. No complaining here.

The Next 2 years

After I was diagnosed with MS a lot had changed. I felt as though my whole life changed especially my perspective and my outlook on things. It was also very hard to limit myself and try and change the way I do things. It appears that stress was the factor to my sudden exacerbation. And to this day, stress is a big, BAD thing for my body. The hard part is I stress about everything, I always have and always will. That is just my nature I guess. The nice thing about the beginning was the opportunity I had to spend time with my dad who was confined to the recliner due to having back surgery only a week or two before I came home. We were companions and I will cherish those days forever. I was a missionary for a month at home, in which I had time to recover, talk to my doctor, start my medication (which was Avonex, a weekly intramuscular injection), and decide what I was to do. I ended up staying home and not returning. Some days I regret it and some days I don't. I still find it weird to say I served a mission when my mission was from November 2001-February 2002, and February was spent at home. It was a very short mission and the questions people ask me makes it awkward sometimes. Those questions are "What area did you serve in?". I only served in one. They look confused so I have to say I came home early due to an illness...then there is a "Do I dare ask what that illness was?" look. Sometimes I share if they ask and sometimes I don't. I don't want to be pitied or be seen as weak. Call me crazy, but that is just how I feel. However, with this blog, I hope to be able to learn to be proud of what I have gone through and how well I am doing so that I don't have to have those feelings anymore. I need to stop caring what other people think and just have more hope and faith that I will continue to do well. Some other times that I cherished in that month that I was home was the weekly temple trips with my grandmother. She worked at the Mt. Timpanogus Temple and would pick me up and take me and help me through the sessions. Since I didn't have much mobility, she helped dress me and make me feel comfortable being the one who had to stay seated when everyone had to stand. The other workers in the temple where just awesome and it was always a delight going there. It kept my hopes and spirits up and it was fun to see my improvements every time I went back the next week. I also can't forget about my mother. A quote that I wrote in my journal during this time was "My mom is the best. I admire her so much! She is AMAZING. She has been such a strength to me." I love you mom and am so grateful for your constant love and support, not only during these last 10 years, but always. May 2002, I was back to "normal" and was able to purchase my 2001 Ford Escape (which I still have to this day). I started work at 1-800 Contacts and met my husband Tyson. Actually, Tyson and I didn't really start getting to know each other until July 2003 but we both started working there within a few months of each other, so we knew of each other and passed each other when we switched shifts. When we started dating, it was GREAT! In the back of my head I was worried what would happen if and when I mentioned that I have MS. When it did happen, which was our second date, I got really nervous. I remember thinking "I wish I could know what he was thinking". But, he just asked questions about it and it didn't seem like it wasn't that big of a deal. Our relationship continued and nothing seemed to have changed since that conversation. In fact it got better. We were married that December 2003. I can't remember if he told me before or after we were married that his friend told him to not marry me because of my MS, that it was too much to handle/too much baggage. It didn't stop him, and I am glad he didn't let it bother him. He has been my biggest supporter and caretaker. He is always worried about my health and makes sure that I stay healthy and strong and does everything he can to help make that happen. I am so lucky to have a husband like that. I went two years until my next relapse, which happened to be almost exactly 2 years from the first. That was when Tyson got to see what it was all about. It wasn't as big as the first one...in fact to this day I haven't had anything as bad as the first relapse. Like the first time, I was put on solumedrol IV for 3-4 days along with Prednisone. I hate that stuff. But, it works and helps me get back to my normal self. I hate it when it happens because I can't do anything. I feel I am a pretty independent person, so when I can't do the dishes, vacuum, bathing myself, doing my hair and makeup, it puts me in a downer and it is a real patience tester. Luckily, I have had Tyson, family, friends from church step in to help in anyway they can.

The Beginning

I was laying in bed last night, and the thought came to my mind to stop hiding that I have Multiple Sclerosis and share my feelings about it. There are so many people that know someone who has this chronic disease and ask me what I am doing, taking, and how I stay looking like I don't have anything wrong. And, it just so happens that someone is running for President right now who's wife has MS and the current first lady's father has MS. So I have been feeling connected to these people and everyone who seems to have the disease. So, I will be honest in my posts and share my thoughts on this disease that maybe I can help someone feel like they aren't alone. Maybe one day I will turn it into a book to give to my daughter so she knows about it and what I went through. So, here is the beginning of my MS story. January 2002, I was serving a mission for my church in Atlanta, Georgia. I had only been there for a month. It was an exhausting, heartbreaking, testimony building, strengthening, and delightful time of my life. It was the first time that I had lived outside of Utah and that far away from my family. I indeed was homesick and VERY tired. One morning I woke up to start my day. The usual scripture reading, showering, breakfast, etc. My companion wasn't feeling good for the past previous days. We decided to take her to the doctor for a sinus infection. As I can remember, I started feeling that my arm was asleep. I didn't quite understand as it was the weirdest sensation. I thought to myself that I must have a pinched nerve in my neck. From my journal entry that evening (Friday, January 25, 2002), "Today was a good day. Something weird is going on with my arm. It is all asleep. I can't really write with it....I'm kind of in a weird mood, so I'll write later. I'm going to bed. Sorry for the handwriting, I think I have a pinched nerve! Oh well, life goes on!" The next morning is when it all began. I woke up to start my usual routine, but I started with my shower. As I was cleaning and washing my hair, I realized that I could not feel the water going down the right side of my body. I panicked. I really did freek out. I got out of the shower and got out to get my companion. When she saw me and how freeked out I was, I remember seeing the look on her face. She too looked frightened and wasn't sure why my right side of my face was drooping. Here is my journal entry that I wrote on Friday, February 1, 2002.

And so, that was the beginning. It has been 10 years and 9 months since I have known that I have MS. There has been up's and down's, but I hope to share my story and maybe, just maybe, someone will feel like they aren't alone or that we can deal with this together. We all have our trials and things we have to face in this life, this just happens to be mine. I don't write this to get sympathy, as that is why I don't tell many people that I have MS. The common reaction is ***GASP*** "I'm sorry!". I hate that. It makes me feel smaller. But, I am now wanting to share and hope that we can all strengthen each other with all our different trials. Until next time.