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, step by step, enjoying every good moment life presents to you… and learning to get over the bad ones…
Dealing with symptoms on a day to day basis is part of our lives since my wife Maria was diagnosed.
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 are going to happen to Maria “”… all patients are different and react differently to treatments … “ be informed 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 now with all the support from the Guthy Jackson Foundation had been very important since Maria’s DX… and there are no words to thank you all 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.
My wife Maria was diagnosed in South America right after her first symptoms, there in our country Venezuela, 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 Doctor 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 not only is very smart and knows about NMO but is the kindness person. We feel very safe under his care…
We have the doctors personal mobile phone numbers !… we can call at any time, any day and they answer the call…
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 ), now when we visit an ER and a Doctor’s office I bring with me the brochures about NMO created by the GJF, 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 and she also programs all her Doctor’s appointments and Physical Therapy times and date on an Ipad application and on 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 a lot about the desease.
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’s decisions is very important, but you as patient and you as caregiver have to be proactive, open to ask questions, to talk to your Doctors… is the best way to feel that you are making the right decisions as well…
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, for being alive and being able to help others…
We are sure there is a reason for this to happen and we take it as a way of helping others 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…
Maria was quadriplegic after her first attack, she lost almost 90% of her vision on both eyes… now her vision is back to normal… she can walk without assistance… and Today we danced again !!!
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 !!
And remember… there are always better days ahead…
Jesus & Maria Loreto.
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