Monday, February 19, 2018

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.

Thursday, February 8, 2018

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!!!