Good afternoon y’all! I really hope your day is going much better than mine has. I already have to get up pretty early for work, but being woken at 3:00 am due to a power outage is a terrible way to wake up. It kind of sets how the day is going to go for you! Waiting patiently for the power to come back on so I could get ready to work was frustrating to say the least. I could not fall back asleep for a few reasons, it was a little hot without the air conditioner and sheer panic in thinking how I would wake up if I fall asleep without an alarm and get ready for my day. Thankfully the power company did work fairly fast and the power was restored by 6:45 am, but I am typically at work at 7:00 am. I guess you can say I was able to partially throw myself together and I was at work at 8:00 am. Even though my manager was fully aware of the situation, my day felt off due to being an hour behind my normal schedule. Thankfully it is over now and hopefully tomorrow will start off much better!
Of course to add to my frustrations from the power outage this morning, I can not seem to get any responses from my doctor’s office. I am waiting for them to send the MRI order to the company that might approve for me to get assistance with the co-pay for the extremely expensive MRI. The nurse, that is normally helpful, sent me the paperwork I needed to fill out and then send to the company MSAA, but apparently failed to send me the MRI order that the company requires. After several phone calls and emails they still have not sent this in or responded to me! The doctor is the one that wanted me to get the MRI, but I guess it was not all that important to her after-all! Maybe I am wrong, but I am taking this to mean my health is NOT all that important to her and neither is the MRI she was forcing on me. Through the fatigue and frustration, I emailed the AVP of the practice and SURPRISE still NO response!!!! I mean who else do you go to when even the AVP does not respond?
Maybe this is my fault because I expected this new doctor to care and treat patients the way my previous doctor from this same office did. Nothing has been the same in this practice since my first doctor retired. My first MS Specialist was caring , compassionate and knew how to communicate, but I guess this is a new day in age and doctors like him are scarce. Communication between doctors, nurses and the patient is vital to good health care, but apparently they see things differently. Every time I see this doctor I go into her office prepared with all my questions written out, just so I do not forget anything and considering I know when I leave the office I will never get a response to my questions. I am not sure what happened to doctors that actually care about their patients, I think they are extinct like the dinosaurs! It is really sad that we pay all this money for a few moments of the doctor’s time, but sometimes feel like we are a nuisance to them? Or maybe that is just me.
Thank y’all for visiting my site today and reading my small rant! I really hope you had a lovely day without any of the frustrations I have experienced today. Your comments are always encouraged and very much appreciated! I hope y’all have a great evening doing what makes you happy! As always I am sending y’all LOTS of love and comfort!
Good afternoon y’all! For me today is just another day of resting trying to get past this incredible amount of pain I have been dealing with for WAY too long! This obnoxious pain is mixed with that burning sensation that will not cool down, tingling throughout my entire body, numbness which sounds like it would be better than pain, but it really isn’t it is almost worse and a headache that seems never-ending! The nurse practitioner I normally deal with is off today and the doctor that I do my best to avoid is in clinic today, which makes her pretty much unavailable. The only thing the nurse I spoke with was able to say is rest and staying hydrated is important until I can get the MRI, which I was still waiting to hear back from the assistance program. I did just email the Multiple Sclerosis Society of America, which is the company that will either approve or deny assistance for me to get MRI assistance. Now the response I got back from my email was quite upsetting, which is something I really did not need today. They stated the doctor did not provide an order for the MRI, which made no sense to me considering I did send them everything I was instructed to by the doctor’s office, imagine that another miscommunication from them! To hopefully make things actually work out for me, I emailed the nurse requesting the MRI order. Honestly the nurse has been the ONLY person at this office that has been at all helpful to me. Maybe I will get that back from them sometime this week!!
It is a little frustrating when you are doing everything you possibly can to get well, but it just isn’t working the way it should be! I am resting, staying hydrated and taking all the medications the doctor has prescribed, but there is still NO relief yet! My guess is the stress this issue is causing me is not helping me get better, but it is in fact making things so much worse! Isn’t it crazy when we know what is causing our problems to become worse, but yet we still change absolutely nothing with our thought process? Obviously I know exactly what is making all my pain more intense, but I am still getting myself worked up and upset about it anyways!
I think to help get my mind off of my many pain issues; I am going to work more on my bullet journal I am trying to put together. I do not want to start it at the end of the month because I do not think that makes sense, so I am planning this for July! My plan so far is to have a few trackers that will include: symptoms and food I eat in a day (this will be to see what foods could be causing more issues for me). I want to also include a Hopes & Dreams page, Positive thinking page to really keep my mind in a happy place and a Gratitude page. I might include a page of books that I want to read considering sometimes I think of a book I want to read, but then forget the title! Then lastly I want to include a page of ideas for my blog because I come up with random ideas, but then forget what I wanted to write about when I try to start! I guess I can contribute my forgetful mind to brain fog from the MS.
I really appreciate y’all visiting my site today! Your comments are always appreciate and encouraged because I do love hearing from y’all! I am doing my best to respond as quickly as I can, but with the way I am feeling there is a chance I might be a little delayed, but I will respond!! I hope y’all are having a good day and feeling well! As always no matter how I am feeling or what I am dealing with I am sending y’all LOTS of love and comfort!
Good evening y’all! I hope you had a great day and are feeling well. This will be a short post just to give you an update! I had shared with y’all on Friday about my FMLA drama, well I actually have some good news. I did of course have to make a few phone calls, but the end result was positive. Both parts of my FMLA request have been approved and will be good through the end of the year and part of January 2019!! So now if I have any relapses, I am covered by law and I was also approved to have my reduced hours, which of course I had already been doing since November of last year. Even though my nerves were completely shot late Friday afternoon, I guess I knew that things would work out the way they were supposed to.
After that ordeal with FMLA was all taken care of I have moved onto another issue, dealing with the MRI assistance paperwork. I have completed the necessary paperwork and even typed up a letter addressing any financial questions they will probably have. I will get this paperwork emailed to the company tomorrow morning and then just hope for the best. I am going to look at this with an optimistic mind and believe that things will fall into place because I also know the MRI is needed. After the request is sent I will know I have done all I could do and hope they will approve my request for assistance. MRI’s even with insurance in the United States are insanely expensive. I still wonder why in the world I pay so much for my medical insurance just to have to turn around any pay tons of money for doctor’s appointments and required procedures, it just really does not seem right to me! Maybe someday the US will follow suit with the other developed countries and offer “free” health insurance. I kind of think it would be insane to hold my breath because things have been this way for many years without anyone stepping in to make GOOD changes!
Thank you so much for visiting my site this evening! I always appreciate you taking the time to read and love reading your comments. I hope y’all have a lovely and relaxing evening. Just think we are almost half way through the week! Remember I am always sending you LOTS of love and comfort!
Good morning Y’all and a very happy Friday! Even though logically I know it is not possible, it feels like the weeks are getting longer. I had expectations for myself for this week, but those expectations were unfortunately not met. I told y’all in the beginning of the week I was going to try to increase my work hours from 6 hours daily to 7, but I was not able to. I also said I would not be hard on myself if I did not achieve this goal, which is a little untrue. As y’all know I have been struggling with a lot of spasticity in my legs, which is causing a massive amount of pain. I tried to push myself further so I could work 7 hours, but the most I was able to do was 6.5 hours. All I can say is, better luck next week because you know I will keep trying until I achieve my goal!
How was your week? Do you feel like the weeks are getting longer or is it all in my head? I think my week might have felt longer because I wanted so much to work longer hours and I was having so much pain! Frustration was definitely at a high!
I am trying to make an important decision about whether I should or should not get another MRI. The only reason why my specialist sent the order in was because I have been back on the Gilenya for 6 months and they want to see if it is helping my illness. Until I mentioned that I was on Gilenya for 6 years previously they did not seem to have any idea and now it might not even be necessary. It is a little disturbing to me that my specialist did not know or remember that I was on Gilenya for so many years prior to October. When she first told me I needed to have the MRI, I thought it was to see if the new active lesions from the October MRI had went into remission or if there were new lesions, I did not know she was ordering this because of the 6 month time line due to restarting the Gilenya! If I am being 100% honest, the only reason I would want this MRI done is to see if there are new active lesions causing all this spasticity and pain. But all the MRI will do is cause me a lot of unnecessary stress and in turn upset me way too much, which we all know the damage being upset will cause. I mean seriously, if all is well with the MRI the specialist will say I am doing well with the Gilenya but, if there is any activity on the scan she might say the Gilenya is not strong enough for me and I need to consider starting a different medication. The bottom line is I am NOT switching medications again until there is a cure because the Gilenya worked SO well for me for 6 long years and if the MS has progressed to Secondary, Gilenya is still used to treat the illness. Do you think I am being logical or irrational with my thought process?
I really appreciate you taking the time to visit my site today and I am really looking forward to your comments, which you know I will always respond to as soon as I possibly can! I hope y’all have a fantastic Friday and I also hope you are feeling well! Please never forget that I am always sending y’all positive vibes and lots of love and comfort!
I hope y’all are enjoying your Saturday! It has been a rainy mess here, but I guess it could be worse! We are actually supposed to have rain all week-long, which will not be any fun for those of us that suffer with pain. I will say though, rain on the weekends is actually wonderful! The nasty weather gives me a great excuse to stay at home and do my best to stay on the couch with a blanket and my cats, of course!
I did go have my MRI done this afternoon. I have had so many MRI’s through the 16 years I have had MS, but this one seemed insanely long! It is always cold in those rooms, so the MRI tech put a heated blanket on me to keep me comfortable. I was only about half way through the first part of the test and was so hot and felt like I was having a panic attack. I tried to waited it out, but I finally hit the button to get their attention to have the blanket removed. The removal of the blanket helped some, but I was still so hot and did not feel right. I was so relieved when the test was finally over, all I wanted was to go home so I could relax peacefully. Now, I have to spend the rest of my weekend waiting to hear about the results from the doctor next week. I am really bad at waiting for something simple, now I am being forced to wait for something that is so extremely important to me! We will see how that goes!
I am going to try not think about my MRI for the remainder of the weekend. I am going to have to find something that will keep me distracted. I am still experiencing so much pain, so I am really not sure if I am going to work on Monday, or if I am going to head straight to my doctor’s office to try to get the answers that I need. But, it is only Saturday and I am going to try to only think about things one day at a time! There is really no point in doing as I have always done, and try to plan my week out in advance, because things never work out perfectly! Saturday’s have always been my more restful day, and I would actually try to get things done on Sunday!
I am thinking that for the rest of my weekend, I am going to try to watch a mindless movie or TV show and possibly finish my Nicholas Sparks book. I have honestly been having some troubles focusing lately, but that could be because I have been under a massive amount of stress or because of the pain, who knows? Does anyone have any good books they could recommend, for my next book? I had been reading so many of James Patterson’s books, but I think that with all the other violence that we hear about on the news, I am going take a break from his books, as they are all full of violence. Do not get me wrong though, I am still a huge fan of his! I am thinking right now especially, I need a book that is more carefree and happy.
I hope the rest of your Saturday is fantastic! I really appreciate all of your comments and truly love our connections we have made. Y’all take care and enjoy your evening!