What do you do when…..

power-outage-generic-320Good 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 tofrustration 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 Expectation-withoutpractice 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!

My signature heart❤Always, Alyssa❤

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Just Another Day

just-another-day.jpgGood 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 itbutterfly-3054736_960_720 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 peace 1see 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!

My signature heart

❤Always, Alyssa❤

News from FMLA

1052674_good-evening-sunday-images-wallpapers-of-2015_1024x768_hGood 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 willhope 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!

My signature heart

❤Always, Alyssa❤

Friday Sunshine!

struggleGood 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 haveMS Warrior 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 mswill 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!

Love 2

Always, Alyssa

Successful appointments can happen!

Friday EveHappy Friday Eve Y’all! I hope you have had a fantastic day! I was having so much anxiety over my doctor’s appointment today because I had been given a run around with this doctor. I went into this appointment very prepared with pages of notes so I would not miss a thing and also had no expectations at all! To my surprise, everything went the right and ethical way!

It was not until recently that I have started going into my appointments with notes because I tend to forget at least one thing because I often feel rushed knowing the doctor has other patients waiting. I have learned that it is very important to take control of the appointment and be very prepared so no time is wasted. By taking control and knowing exactly what you want out of the appointment it shows the doctor that you have expectations of the appointment and demand quality care! These doctors see so many patients each day that they probably feel overwhelmed, even if they do not say those words out loud. I will admit I have learned that if I keep my expectations of my determinedappointments relatively low, I will not be frustrated and disappointed. Today’s appointment went very well and my doctor even apologized to me for all that I have gone through these past couple of weeks!

I think it is extremely important that even when things seem like they are all going wrong, to find it within yourself to never give up! In my opinion, giving up is the only way to truly fail! I have spent a few weeks now fighting for my rights to live a life as pain-free as possible and all my fighting has paid off! I have fought for myself with two different doctors and things are all going right for me now. Sometimes you have to fight in a pleasant way, if that makes any sense. It is so true that you get more flies with honey, so handling all situations in a positive and since way works for the best!

Thank you for visiting my site today and I look forward to reading your comments. I promise you that I will respond to all of your comments just as quickly as I can! I hope you have an amazing and relaxing evening! On an extremely positive note, tomorrow is Friday and then we have the weekend to enjoy ourselves! As always, I am sending y’all lots of love and comfort!!

Love 2

Always, Alyssa

Stages of Parkinson’s Disease

april parkinsonApril is Parkinson’s Awareness Month, so I really want to write a little about this disease. I am doing this not just because it is Parkinson’s Awareness Month, but also because someone very close to me is suffering with this disease. My step father is battling Parkinson’s with as much strength as he has and will not let it defeat him! Parkinson’s disease is a neurodegenerative disorder that can lead to progressive deterioration of motor function due to loss of dopamine-producing brain cells.

We all learned many years ago about Michael J Fox announcing his personal battle with this disease at the young age of 29, but so many others are fighting this disease! Parkinson’s affects 1 million people just in the United States, but also affects more than 10 million worldwide. Typically the onset of Parkinson’s is at the age of 60 and it affects men 50% more than that of women. According to the Parkinson’s Foundation there will michael j foxbe 60,000 each year diagnosed with Parkinson’s. That sounds like an astonishing number of people who have to deal with this disease and there is still not a cure as of yet.

There are five stages that take place with Parkinson’s disease.

Stage 1: Symptoms are mild and do not interfere with quality of life.

Stage 2: Symptoms will worsen and daily activities become more difficult and take additional time to complete.

Stage 3: This is the mid-stage of the disease. Symptoms may be loss of balance, move slower and falls are common. During this stage, symptoms impair daily activities more so than before.

Stage 4: Symptoms become more severe and assistance walking and performing daily activities is needed.

Stage 5: This is the most advanced stage of this disease. The individual is unable to walk and will need full-time assistance living.

Now despite these various stages with the proper treatment people can live a full and productive life. The life expectancy for those battling Parkinson’s is no different from someone without the disease. Of course things can happen, but as long as the person living with Parkinson’s is following the doctor’s recommendations and has a strong support system, they will survive another day!

This was just my introductory post about Parkinson’s. In the next posts, I will talk about the various symptoms and treatments available. Like I already said, there is not a cure for Parkinson’s available yet, but there are things that can be done to slow the progression down. I know that every chance I get, I try to stay on my step father to hope and cure parkinsonensure he is taking his medicine as directed. I know it is not easy for him to get the exercise that he should, but I feel he does what he can. Now that spring is here he is able to do yard work and make his lawn look beautiful. For him having a nice looking yard makes him very proud! 

I hope y’all had a nice Wednesday and your week has been great! Thankfully the weekend is right around the corner and we can do what makes us happy! As y’all know I have another doctor’s appointment tomorrow where I will be fighting for my rights to have a life as pain-free as possible. We will see how that goes!

I hope y’all have a great and relaxing evening! I always appreciate you taking the time to visit my site and I love to read your comments! I will respond to all of your comments as soon as I can! Sending y’all lots of love and comfort!

Love 2

Always, Alyssa

Last day of March!

MS AwarenessAs you already know today is the last day of March and Multiple Sclerosis Awareness Month. Has it been a pretty good month for y’all or have things been like a carbon copy of February? I feel like things are about the same with most things in life. The political world seems like it is still a bit of a mess with a little too much drama for me! Too many grown men acting like children in a playground! We can continue to hope for better times though and even if everyone around us continues to act the same, we can all just stay optimistic and happy with what we have been blessed with in life!

I can say that I have learned so much about how to handle doctor’s appointments better! I use to go into the appointments with many things I wanted to discuss, but then always would get distracted and feel rushed normally by the doctors actions. It never failed, I would leave the appointment and remember things I needed to get answers to and be angry with myself for forgetting. This last appointment I had everything I had questions about written down, which was wonderful because at the end of the appointment I looked at my notes and almost forgot one important question! As y’all know I have another appointment on Thursday and I know already I need to be very prepared and honestly keep my expectations low just so I will not be upset afterwards. I feel my upcoming appointment is pretty important because I am going in fighting for myself and my well-being!

At the end of MS Awareness month, I want to say I hope those that were not familiar with MS learned a lot and those battling MS gained even more knowledge. MS is definitely not the easiest illness to live with, not that any really are easy, but at the same time we all handle it as well as we can! It is a very unpredictable and at times extremely painful illness to live with, but MS Warrior 2there is no use dwelling on that. Dwelling on what we have to live with only causes more issues in the long run. It is extremely important to do our best to remain positive and stand strong to how we manage our illness. Giving up on our hopes for a cure will not make it happen any faster and will not help us living today! I feel very strongly that we all, no matter what our struggles are must live in the now. Living in the past will not change anything, but it might hinder our present times! We all should have already learned from our past experiences and therefore let it all go and moved on!

I hope y’all are enjoying your weekend! Hopefully the weather is beautiful for you and you are able to get a little sunshine! A little bit of sunshine can do wonders for our mind and spirit! I hope y’all are feeling well and of course staying as positive as you can. I appreciate you stopping by my site today and I will of course respond to any comments you might have as quickly as I can! As always I am sending y’all lots of love and comfort!

Love 2

Always, Alyssa