Yesterday on my 1st blog I left off on while I was at the heart doc, so here is some more…
After being totally thrown off by what the heart doctor had just told us, he examined me & come to find out everything was perfect (as perfect as could be with heart disease) with my heart at that time, so he signed off for me to be able to have my gastric bypass surgery. Several months had passed I lost my 18 year old Niece (that is another long & complicated story in itself) that shook my world up completely, the day after her funeral in September of 2007, I found out that my surgery was scheduled for Halloween Day, just a month away & the only hospital they could do it at was the same one she had just passed away in & it was their fault she was gone. So needless to say that was one of the hardest decisions I ever had to make, but after fighting insurance for 6 years to have this surgery I felt I had no other option. So had the surgery on Halloween & everything turned out great, lost 130 lbs & today a little over 10 years later still have kept it off. Well after surgery I didn’t have diabetes any longer, b/p is perfect & only have seizures with certain medications. Well fast forward to November 2010, I lost my Daddy, boy he was one Amazing Man!!!! But on his death bed I promised him I would take care of my Mom, I would do what ever I had to keep her going, to be her protecter to the best of my ability. It wasn’t hard at all cause she & I had become best friends, I would go over a minimum of 4 days a week & just be with her, care for her, what ever she needed I tried to make happen, then she fell & broke her hip. We were at church walking out one Sunday morning, she fell & after that seems things started going down hill, several months later is when she fell going to bed late one night & broke her hip. She pulled thru like a champ, but mentally she wasn’t all there after that. Then the ultimate most horrific thing to a Mom happened, my little brother passed away in September 2015 (he is the one that lost his daughter in 2007) from that moment forward you could see my Mom giving up more & more, fading away from me, nothing I could do to help her, to bring her back to even just 3 months prior. From there she ended up with Dementia, not really bad but just enough her personality changed, not so much for the bad, she was funny, laughed more but confused a lot. She came & stayed with my Husband & I a couple times through out the last year of her life. Matter of fact she came here to our home on Hospice to pass away. She passed January 14th of this year. This has been so hard, my Mom & I, if I wasn’t there we would talk on the phone a minimum of 8 times a day & every night at 9 she would call & we would talk for at least 15 minutes most nights an hour or two, so now I go to call her every single day & it hits me all over again. Every night at 9 I try to be asleep because I sit there & just wait for that call, but it never comes. If only Heaven would have phones. Hospice had told me that when your loved one dies in your home that you will always have your Angel in your home with you, so that has pretty much kept me going even at times I feel like giving in, I know she is with me & she is in such a better place than here! I know she is in Heaven with our Dear Lord, Daddy, brother & niece & all her family members that left this earth before her. Now just 3 months later and with 5 siblings left we are in the process of having to sell our family home, that consists of going through over 50 years of memories in that home, separating, organizing, remolding & everything else that goes along with selling your family home of 50 years. Needless to say it’s been a struggle, you can’t really mourn the loss of Mom yet cause since week after her passing we had to start with the house. So till we get this behind us we live in a constant mourning period. So hopefully soon it will be sold & we can all start the healing process & learn how to cope with our “new life” as it is now.
Now I go back to the beginning of my blog to 3 1/2 years ago…I went from doc to doc no one could figure out what was going on. Couldn’t talk right, shook constantly inside & out and hurt constantly. I went to speech therapy, rehab, & occupational therapy you name it they had me in it. Nothing seemed to help! One day they referred me to a Neurologist in Lafayette took prolly a month to get in. I went to see her, husband in tow & she was so sweet (at first) we talked & she asked questions stated she was gonna run such & such tests. A little later in to the appointment she continued reading & saw I had previously had seizures, they called them pseudo seizures, yes that’s what they called them being they were brought on by medications. She then changes her whole disposition against us and said doesn’t need to do any testing that I have FND (Functional Neurological Disorder) we were like ok what does that mean??? She said that all this is in my head that the speech, movements, etc…are all a figment of my imagination. She said to quit going to anymore doctors & go home and enjoy what life I had left, I looked at her said ok so you just tell me it’s all in my head but now your saying quit going to doctors and go home and die pretty much? Her exact words were “exactly” needless to say I left there in total shock, was crying so she said I could stay in the room till I could get myself together because I wasn’t going through her waiting room crying. OMG needless to say we left through the back door. I came home got online and signed up with a group to learn more about this FND (which the group I joined is an Amazing group, I still get on there constantly & correspond with others that have FND), really it’s a disorder but the more reading and learning I did I just felt this wasn’t it, that it’s not all in my mind if it was HOW could I just wake up one day not be able to talk, not be able to stop moving??? For over a year and a half I lived like that, felt crazy, felt like I really must be losing my mind, cause nothing was getting better if nothing else it was getting worse. At the visitation of my brothers funeral in September of 2015, I noticed one of my cousins kept watching me all night (I know I went to rest room at least 20 times to make sure didn’t have anything coming out my nose, my clothes weren’t tucked in where wasn’t supposed to be…) then finally next morning at the funeral she came up to me, she has Dystonia & lives in New Orleans, tells me that she thinks that is what I have (that is why she was watching me like a hawk, lol) she asked me if she could get me into her doc would I go, well heck yea I have to find out what is going on. So within a month I was headed to my appointment there with her doc, he had spoke with me over phone & knew just by listening to me what it was but couldn’t say till examined/tested me. I have Dystonia, at the time he said I had that and the beginning stages of Tourettes and Parkinson. Wow so it’s not all in my head after all!!!! He started me on a medication for Dystonia and my local doc continued from there, well things didn’t get better with meds but didn’t get worse, so about 6 months later my medical doc sent me to a Rheumatologists, to check to see if he could figure out why my whole body hurts all the time (its like my insides move constantly, makes me feel like I run a marathon daily) well come to find out the Tourettes is full blown now along with the Dystonia and added Fibromyalgia to the mix. He stated that all this was caused by my gastric bypass. That was a shock. After seeing him for several months he suggested to my regular doc that I get on Adderall XR for the Tourettes & I started that, boy my whole world changed, I could talk right (for the most part) I didn’t shake as much, insides still move constantly, but at least I can somewhat control the outsides. I was so happy I could go in public with my twin 13 year old Granddaughters & not be scared to death I am going to embarrass them in front of their friends (they really wouldn’t care what people said, but me I know how mean people can be & I didn’t want to put them in that predicament, because I have been told at 8:30 in the morning that “I must be a drunk to be so drunk at that time of the morning”, was only one of them, another was “I should be totally embarrassed to go out in public, I should stay home or check myself into a mental hospital” those are just a couple of the things I have been told by perfect strangers in a grocery store, so I surely didn’t want them hearing anything of that nature & feel the need to have to defend me) so for about 3 1/2 months I was so good, then November-January happened with Mom then she passed & it all went back to bad again, went to doc last week & he upped my meds & its starting to take affect again. He said he guesses when I stress/upset that it will always get worse, but at least now I know, IT’S NOT ALL IN MY HEAD!!!!
So I guess honestly I have said this to say! PLEASE DON’T EVER GIVE UP, CAUSE THERE IS AN ANSWER to what ever is happening to you at the moment. Cause for awhile there, I really felt like I needed to be checked into a psych ward, I really felt that crazy. But thanks to God and so many Prayers, to my cousin & the numerous amount of docs that I know now that I can control this & I can fight this, might not be a cure but at least I know now I can control this to an extent as of right now at this moment.
Well guess I’ve written a lot the last two days & hope to be able to help someone else that might be struggling with situations like this. Also 6 years to fight for gastric bypass with insurance companies & I finally got to have it, just DON’T QUIT FIGHTING when you know inside that something is wrong, just don’t quit!
Thanx for reading