Learing to carve out even a small piece of the day for you can be the hardest to do.Howver in the scheme of you and maintaining your sanity is not.
If you have a starting place as to where they begain,and what triggered it.No matter if it is stress,anxiety ot you are just about to lose it,take a deep breath,excuse yourself and take even three minutes to write how you are feeling.It is those early moments that when you write them down,and then do that filling in that a pattern will emerge of what your stress points are and by learning to recogognize what they are you will figure out how to deal with them and discuss if you wish with you family.If you want to keep it just for you,that is fine too.
When I started having my blank outs or memory ot speech problems I gave myself excuses as did so many other family and friends.I can honestly say nothing was done until the full blown seizures started after our eledest daughter died.I was told the same stories because then if something were to be wrong who take care of there needs,as did some so called friends. They were not Doctors,heck most as I have said know nothing if little about this disease.I was fortunate that I started remembering little warning signals and this would help greatly,no matter the nay-sayers writing it down and not saying anything and keeping it with me at all times finally proved to be my salvation.
I usually would feel a sense that something was about to happen. I will see a halo or smell a faint scent of ammonia and try to tell somone and be gone,I would come to having no memory of the occurence. When I started my testing I was allergic to dye so that was a problem and as I was always up and down with coumadin.Prednisone too,a lot,plus other stuff for seizures,It has taken this team now I have plus now the Neuro Opthalmologist. Remember always if you are in the need of help even if it is only for an hour to recharge your batteries there is usually someone willing to do it.Our problem with being women is that I think from a very early age we are taught or wired that is shows weakness or we should be able to do it all. WE CANNOT!
I am a water baby,so now that I cannot do more than strretches to keep my body from getting worse and have muscles atrophy,I feel better if I am in a tub, and just let my mind go with the flow.
I useally start out with quet Vivaldi,and candles and a pillow and just let my mind relax and let my hair float with the water.It is almost like returning to the womb,safe,secure,yet you know you have to come out for air.Wheh this started getting more complicated that I realized,I honeslty felt it would take a team of Drs.to get me back in shape again just to do whatever needed to be done to get the APS under control.I had not even thought about my vision until I went and they said I had a cataract.OK,that was not was I was fearful of.I had thought possibly maculear degeneration.It was not until he said he would do it while I was on coumardin and not bridge me off of it.
I had to go into the hospital and after talking to my Hematoligist and Neurologist,and telling them and seeing the look that transpired between them.They both said the first words a doctor vows are "To do no harm" I however in the next few weeks noticed my vision was worsening and went to another eye institure.She said yes,there was definitely a cataract and I had totally flunked the Field of Motion test.I to be honest had thought I had aced it. When I mentioned to her we were going to Florida,she said ,"Run,don`r walk to the Bascom Palmer Eye Institute. I am now in the process of gathering all my records,oh btw,you have a RIGHT to copy those records yourself.No need to pay the varying charges for them. I see the new Opthalmalogist right before the final move,but after reading all the literature I could find and what they sent me,this disease attacks the weakest parts of your body.In my case my eyes,well the one whcih was damaged when the other one was and had to be eventually removed,my kidneys and my lungs,along with the trunk of my body.
I do not look at this as a game of he said,she said,I look at it as one more obstacle that has been put in my path.I have told you I have had a life,unlike so many others who are in their teens to twenties and into their fifties and sixties.It seems that the younger ones are the ones who die first because in most cases ER doctors have not been trained to look for it and do not order the right tests.Again,I owe whatever kind of life I have made warts and all to the ER doctor who insisted even at age 32 it was a pulmonary embolism. Once again a woman came through.Most of my doctors now are women,not because I do not think men are up to the task,but for the most part a woman understands a womans body and how even cycles change our physical beings.They do,another reason for any of you who I hope and pray do not ever come up positive for this do NOT take any form of birth control that has hormones,they can wreak havoc on your body,clotting time etc.There are plenty of other types that are just as effective.BTW,One of the reasons this is so hard to diagnose is you can come up negative and then positive and vice versa. Usually today,unless you are pregnant they go with your history and amount of events you have had.
Enjoy the beginning of what can be the best you there is.Remember that old" Charlie" commercial where she sings about doing it alll? We can,but should we have to? Running the kids from place to place or activity to activity does not make you a better parent.As I seem to recall,there are two in the marriage so ask him for help,or work out a drving pool with friends. Do not feel as though you are invincible,you are not,well if you are let me know the secret.
I lost so much of my life due to my own malaise,not willing or able to listen to the voice in my head and in my gut,and lost so much time taking care of others I never listened to the real me.It was easier especially after losing our daughter to believe others that it was all mental because they could understand that given my childhood etc.Just because I choose the wrong circle does not mean they did not have good intentions,it just means they did not know all and none of us do. Even adults,though they may be well meaning can be bullies.In most cases you are usually the best judge of you and do whatever it takes to listen to that inner voice remiinding you that you know that and by keeping the journal you will have proof,no matter the issue.
Dr Richard Besser of Good Morning America admits he knew little to nothing about APS and so many other orphan diseases until I told him I would be the pebble in his shoe,just to remind him that we are here and not going anywhere unless it is o our time to do so.He was kind enough to send me a message after the chat on Twitter on Rare Disease Awareness Day that he will always have the pebble because none of us know all,and those who do,do not. Obviously the majority of us still have the capacity of learning.It never hurts to do so.
I will always close these type of blogs with the same advice until you are doing it......Be Good To Yourselves,if not You, then WHO?
