Better days ahead…

“Because I am still in love with you… I want to see you dance again…”

Today I danced with Maria… !

Just the way it is…  once you realize your new way of life there is no other choice but to adapt and continue…  living day to day,  enjoying every good moment and learning  getting over  the bad ones…

Dealing with symptoms on a day to day basis is part of our lives since Maria's DX.

From the beginning being informed had been the best way to cope with this new way of life for us...

Once I wrote on my blog that the best advice I got, the first day of Maria's first symptoms was from her Neurologist  in South America,  she told me "son, please don't think that all the bad news that you find and read online is going to happen to Maria "... all patients are different and react differently to treatments as well… “  be inform and ask questions so you can make the right decisions...

Once I found this group my perspective about NMO changed...

Tim and Gracie along with all of you with your posts and support had been very important since Maria's DX... and I thank you for that...

Other line of support of course had been our Doctors... we had been very, very blessed to had found the best doctors to treat Maria.

Maria was DX in South America right away after her first symptom,  there we found a very kind Dr that knew about NMO and treated her right away...

Once we got back to the US, we found a Primary Dr that was willing to listen and learn about NMO ( it is amazing how much he supports Maria and how much he knows now about NMO now... ( he listens to me and researches a lot ).

We also found a Neurologist in our city here in the US that is not only very smart and knows about NMO but is the kindness person.  We feel very safe under his care...

We have their personal phone numbers… and something very important that we accomplished is that the three of them communicate with each other about Maria’s care…

I keep Maria’s file up to date on the Patient’s like me site ( I print a report every time we visit a Dr. or have to go to the ER ) I also registered on the web site of the Lab were Maria gets all her test done so I can print the results in advance and make copies for all the doctors…

I created a chart of all of Maria’s meds, ( assigned  a color to each one ) printed little colored circles and glued to each bottle… also printed a time chart for the daily doses… )

Maria  programmed her smart phone with all the doses and times as well, and also programs all her Doctor’s appointments and Physical Therapy times and date on the Ipad and the smartphone as well…

 NMO may be part of our day to day now… but NMO is NOT our life… !!

I know that many of you had not been as lucky as we had to find Doctors that know about the decease.

So  it is very important for you as Patients or caregivers to be informed...

As I said above NMO is part of our lives but we don’t let it rule our lives… we had also cried ourselves to sleep many times… we’d had many of those days… but there are always better days ahead… I assure you that…

Any new symptom is a new flag and a new question… but being informed helps me to have the patience and the tranquility to overcome the fears and to make the right decisions for Maria at the right time…

 I never make a decision or changes on Maria's treatments without consulting with the doctors…   “never”.

Many times I post questions on this site about a symptom or procedure and I thank all of you that give us advice, support and comfort.

 I read and gather all of the info, but I always discuss with our Doctors before I take a new approach on Maria’s care…

Trusting your Doctor is a very important, being proactive, open to ask questions and to talk to your Doctors is the best way to feel that you are making the right decisions…

We accept life as it is now, we do not ask why this happened to Maria,  we never blame God or anybody for this new way of life…

We were raised as Catholics ( go figure our names are Jesus and Maria… ) but after this change in our lives we are not more religious or less religious. We still give thanks  and we pray every day for all…

We are sure there is a reason for this to happen and we take it as a way of helping others to cope with this new way of life… we support Spanish speaking patients in South America and in the US that get in contact with us.

I do not see my wife Maria as being sick… I love her as much as the first day I saw her… maybe even more now because of her courage… 

Our life changed since her diagnosis… but this is our life now and we accept it, we live it, we take it one day at a time… one step at a time…

 We Love You all…  you are our friends… you all are part of our family !!

Peace and a Happy new Year to all !!!

Jesus & Maria Loreto.