Good Evening Y’all! I hope you had a good day! As always, please leave a comment and I will respond to you as quickly as I am able to!
For some reason today was one of those days, I just wanted to curl up on the couch and just kind of be alone. I guess it is common with those of us with MS and probably any chronic illness to have those days when our moods are a little out of sort. I am sure that this will pass just like everything else.
I am planning tomorrow to go to get updated pair glasses, so when I do not feel like messing with contacts, I will still be able to see. I do not know if it is just me but wearing contacts all day long end up irritating my eyes. During my outing, I am planning to have lunch with my mother. Considering the amount of fatigue and pain I experience we are only going to those two places and then back home, I really do not want to wear myself out too much the day before I return to work.
I did not do much today but I am so exhausted, I can hardly keep my eyes open but I also could not take a nap. I guess it is because my mind just will not stop running on overdrive. I am trying to keep the stress I feel under control by reading my book that is all about stress and I started crocheting a blanket! In the past crocheting always helped me relax because my mind is thinking about the blanket I am making. Funny thing is, I completely forgot how to even begin my blanket because it has been about a year since I did my last one. So I watch one video on YouTube and it all came back to me! I do think the most frustrating part of crocheting is the beginning part of whatever you decide to make. Once that initial part is done of starting what you are making it gets so easy and just clears your mind. I have several blankets I have made in the past that I am thinking about donating to the Crisis Ministry. Last year I already donated several scarfs I made to Crisis Ministry.
I hope y’all are doing well and having a good evening! Take care and always remember if you need anything, I am here to try to help as much as I can!!
What a way to start the week! It is official, I am back on the Gilenya. I had a doctor at my house a little before 9 am this morning and his assistant came a little bit after that. I immediately liked the doctor that came out, but could have done without the assistant! The doctor was a very sweet and gentle older man who both of my cats even liked. The assistant had a bad start because she got lost getting to my house, even with GPS, and was so frazzled she was just extremely abrupt. As I said yesterday, I was told all I would need to provide was a work space for them, which I did, but she thought she should be able to sit in the living room and watch TV. I never actually said no you can not sit in the living room just watching TV, I just said I was told to provide you a space that you could work in. She ended up being allergic to my cats and left for a few hours to get medication for it and then sat in her car until the last few minutes, which was really okay with me!
The first thing that was done this morning was, the doctor asked me a few question about any medications I was on and if I had any heart troubles. After that the assistant performed an EKG on me and did vital signs. Once everything checked out with the EKG and vitals, I was able to take the first dose of Gilenya. For the first hour and a half my vitals were checked every 30 minutes but then changed to every hour. During the course of the 6 hour monitoring I chatted with the doctor some. I found out that his wife has MS, he is working on retiring, he once worked at the VA hospital and now works 2 days a week at an Urgent Care. The last part of the monitoring was one last EKG and vital signs. The doctor did have the assistant do the last EKG twice because there was one thing that he said was very active, but the second time everything checked out. Considering I was on this medication for 6 years before, I am really not concerned about any side effects or serious issues. I know that most antibiotics have an interaction and any vaccines can cause serious problems, but I know there is one antibiotic that is safe and I do not get vaccines or the flu shot as is so this will not be a problem for me!
In a way I am glad that I made the decision to go back on Gilenya because I was pretty much flare up free while I was on it previously! I really am hopeful right now that this illness will be under control and stop causing me issues. I do not know and no one can be sure if the damage that the new lesions has caused will get better or they are permanent, but I have to remain positive. I have always been so terrified of not being able to walk as normal as I always have and needing some sort of assistance, but there really is no use thinking about any what ifs. I can be honest with myself that right now things are not as I wish they were because I have a lot of pain and my legs and feet do not want to corporate all the time, but there has to be a bright side beyond this cloud of darkness. Life is not always as we planned and there are times when adjustments must be made, but that does not mean weakness or suggest you should feel any shame, it is just doing what you have to do.
Right now I am planning to return to work on Thursday. But for the first two days I am only working 4 hours and next weeks hours will be contingent on how I heal. I know the Gilenya will not work magic in a week but hopefully continuing to be on it will be effective in my progression!
I hope y’all had a good start to the week and are having a good evening! I appreciate all of you that have been encouraging as I started back on Gilenya. I have received many emails allowing me to have great conversations with so many people! I do sincerely hope that my posts help you as much as your comments help me! Take Care!!!
Good evening Y’all, I hope you had a great Sunday! I received a phone call this afternoon from the doctor that will be here tomorrow morning to give me my first dose of Gilenya. I explained to him that I was on this medication previously for 6 years and have only been off of it for 3 months, but did understand the protocol. I told the doctor that we currently do not have a dining room table, but that I have set up a folding table for him and his assistant so they will have somewhere to work. Truthfully, I had the folding table set up for my comfort more than theirs. I do not want to have to sit in my living room with 2 people I do not know all day. I know they are probably nice people, but sometimes we need a break from feeling like we have to entertain.
I am going back on the Gilenya with a positive mind-set. Like I said, I was on Gilenya for 6 years previously and did not experience any severe flare ups, so maybe I can go another 6 years with nothing major happening! Even though I decided to go back on a medication that is strong, does not mean that I believe that my MS is aggressive, I just think it is a little sensitive and needs to be treated like so. I think that is a much better way to view things!
Now, I am very well aware of how things are supposed to go tomorrow. The doctor and his assistant will arrive at my house a little before 9 am, ask several questions, do an EKG and then give me my first dose. Once I take the first dose, the doctor or his assistant will have to monitor my vital signs every hour for 6 hours, unless I can somehow convince them they can leave earlier. Considering I know they have a protocol they have to follow, I highly doubt I can convince them to leave before the 6 hour time period as that is what the company requires, but a girl can try!. The doctor will have to do another EKG before he leaves just to make sure there were not any changes, but I am sure everything will go as well as it did my first time around with this medication!
I hope the rest of your evening goes well and I hope you have a great Monday! I will let y’all know how tomorrow goes, but I really am not at all concerned. Honestly, the only thing I was worried about was having people I do not know in my house all day, but I am sure they will not be at all bad! If any of you have experienced having home health personnel in your home and have any advice on what I should expect, please let me know. I am trying to make them feel as comfortable as I can, while still keeping my own comfort level. I know I am not allowed to leave my home the entire time they are here, but I guess they can probably go somewhere for lunch, hopefully!
Happy Saturday Y’all! I do not know about you, but I am loving the weather right now! Temperatures for the foreseeable days are in the 60’s and 70’s, except for tomorrow when it is going to be in the low 50’s. I am so glad we do not have to deal with insanely hot temperatures until next year!
Y’all know I have been dealing with a lot of leg spasticity and increased back lately. This morning I woke up at 7 am with an intense amount of pain. I have done everything the NP told me to do yesterday with no relief yet. I am sure that if I continue doing what she said and have patience, things will get better. Right now it is really hard to get comfortable, because I hurt all over. The only thing that gives me any relief at all is my fantastic heating pad. It is amazing because most doctors say that heat makes MS worse, but a heating pad or a hot shower, helps me so much!
Thankfully, I do not have anything that I have to do today. My husband and I are going to relax at home today and watch a movie tonight. Not only am I suffering with a lot of pain, but my husband has been battling a terrible migraine and neck pain for days now. We understand each other so much when it comes to pain, which is good so we are not pushing the other to do anything. We are both very supportive of each other and have compassion for what we are going through. It has been a hell of a few weeks for both of us. I am very hopeful that things will get better though, for both of us. Positive thinking will normally lead to positive results! I guess smiling through the hard times is better than crying through them.
I did start a new book yesterday called, The De-Stress Effect: Rebalance Your Body’s System for Vibrant Health and Happiness by Charlotte Watts. I am hoping this book will help me figure out ways to not stress about everything and learn to handle things better. Getting all worked up and stressed has never made any situation any better, in fact it has only made everything worse. I will keep y’all informed about how this book helps and also share any information that I find helpful.
I hope you have a fantastic Saturday! It still amazes me how much I have gotten to know so many of you. I have really enjoyed our conversations so much. Of course, feel free to leave a comment which I will respond to as quickly as I can, but also do not hesitate to email me if you want to chat or vent. My email address is firstname.lastname@example.org.
Good Evening, I hope y’all had a great Friday! Today was a beautiful day with the temperature being nothing short of perfect! The sun was shining and it was cool out! I love the weather in the fall!!
I ended up changing my follow-up appointment with the Nurse Practitioner at my doctor’s office, from Tuesday to today. The NP that I met with today was actually pretty fantastic. She listened to me and made good suggestions as to how to help my leg spasticity. She is also having the doctor extend my Short Term Disability until Wednesday. She does not want me to rush back to work after the flare up and also with starting back on the Gilenya on Monday. She told me that rest is very important right now.
One thing the NP recommended to help with the leg spasticity is stretching exercises. She said it would be helpful to do stretches for 10 minutes in the morning and 10 minutes in the evenings. She shared with me that YouTube has a lot of stretching exercises, where you can watch videos and then try them. I have already found several, but I honestly do not know how to add a video to my blog. If any of you can tell me how to do this, I will be happy to do it in my next blog and really appreciate your assistance.
As y’all know this flare up has taken a lot out of me, but I am still trying my hardest to stay positive. I told the NP that I saw today, how discouraging it was to be on Short Term Disability, when I am only 36 years old. She was very empathetic to my feelings and told me, it is nothing to be ashamed about. She understood that it can be a little discouraging to use those words, Short Term Disability, but said that I am doing what I need to do to take care of myself. I told her about a comment that was made by someone I had once considered a friend, that I need to just quit my job and go on disability. I told her that comment really hit a sensitive part in my mine and had really hurt my feelings and kind of discouraged me. She reassured me that people say mean things like that because they really do not understand and because MS is like an invisible disease that only I feel, some might tend to make the assumption that it is all made up, but to just ignore comments like that. I do know she is right but it made me feel a lot better about things to have a medical professional not only acknowledge how I was feeling but also reassure me everything will be okay.
I hope y’all have a good evening and a fantastic weekend. Please let me know if you have any comments and I will be sure to respond as quickly as I can. Oh and please let me know if you know how to add videos to blogs. I am still relatively new at this, so I am learning as I go! Thank y’all for all you do not just for me, but for others that are on this blog and yourself. We have a very strong support system that really does blow me away! Take Care!!
Good afternoon Y’all! I hope you had a good Thursday! It is amazing, the weather is finally starting to stabilize and be cooler temperatures with no humidity! This summer was insanely hot every single day. High temperatures and humidity makes things miserable.
Today was a pretty bad day for me. As y’all know I went back to work yesterday, but only was able to work 5 hours and had to go home because of the intense pain I was having. I had so much additional pain in my back and so much leg spasticity, I could not even sleep last night, at all! Needless to say, I was not able to go work today. I think it is possible I tried to do too much yesterday and pushed myself further even when I felt the pain getting worse. It is okay though, a minor set back will only make me stronger and things will get better. I am hoping tonight I will be able to get some sleep and the spasticity will calm down so that I can go to work tomorrow. No promises as to hour many hours I will work, but I am going to give it an honest effort!
I do think it is best while healing I should not make any promises as to what I am going to do. I think it is best to just take things one day at time, or even sometimes an hour at a time. If I get too much on my mind of what I think I need to do, it will only cause me stress, which will only allow for negative things to come into my life. Even though this flare up has been the worst one I have experienced, I can honestly say that I feel truly lucky. I have had MS for 16 years and only had a couple of bad flare ups. I guess in my opinion that makes me blessed. Having a debilitating illness for this many years and still having the ability, most of the time, to do what I want to is purely luck! I can not say for sure though if it is really luck or just the fact that I will not give into anything, no matter how bad things get. Even though my legs and back are as bad as they are, I still want to do as much as I can for myself and only ask for help when I have to. Call it stubborn or headstrong, but it has worked for me.
I hope y’all have a great and relaxing evening! I truly love all the comments y’all make because I love being able to communicate with others that understand the trials I go through. I hope that during our conversations, I am able to help you as much as you help me. I try to respond to all your comments as quickly as I can and when asked any questions, I do try to give the best advice I can based solely on my experiences. Take Care!!