Wednesday, May 21, 2014

Birthday / Goodbye Grandpa

Thank you to everyone who wished me a happy birthday. Today was a mixture of cheerful and crushing sadness. I am still trying to come to grips with it even as I write this. It was a good day overall until late afternoon when my aunt and I were about to go out to dinner for my birthday. We found out my Grandpa Jim passed away this morning. I fought so hard to keep it together and we still went out to dinner. Just doesn't feel right to be happy or celebrate anything in light of the news.

All I kept thinking about was not getting a chance to tell him how much I loved him and see him one last time. Crying a lot, and going to cry a lot more and mourn him. He was the only grandpa I ever really knew ( my biological grandpa passed away when I was very young ). Remember the good times. He's in a better place now and no longer in pain.

I want to go to his funeral. But he's in Chicago. His son-in-law finally come down to Mississippi to get him a week or so ago and brought him back up there to stay with his daughter because of health issues. I want to go but have no means to get there, no money to travel.  If we were still in Minnesota, it wouldn't be as difficult to get there.  There's more stuff I am fighting with mentally about it... but not going into that here.

Coming home to read your notes and best wishes for my birthday helped make things a little better. So I wanted to take the time to thank you all for that.

I'll probably be withdrawn, because this is one of those things where I am really not okay, no matter how hard I try to lie to myself or anyone else and say otherwise. Took me forever just to write this past the tears and sobbing.

I'm afraid I might end up hating my birthday from this point forward.

Sunday, May 18, 2014

Upcoming Birthday, Service Dog Fund, Rambles

Several people have asked about getting me something for my birthday which is this Wednesday, May 21st.

If anyone wanted to get me anything, I would instead ask if you might consider donating something to Journey's service dog fund. You can share the link with people you know too.

Here is the link:

http://www.youcaring.com/medical-fundraiser/fundraising-for-mobility-assist-service-dogs/125196


There hasn't been much interest generated by it the times I shared it, and I am pretty sure the same handful of people see my posts, so I can't keep asking you guys to donate more when you already have ( which I am eternally thankful for because every $1 helped! ).  I still need to raise money for training and supplies. I owe my aunt $100 because she helped me buy Journey a new kennel as long as I promised to pay for half of it ( one of the extra large shell kennels costing almost $300, got it on sale yaaay but still expensive ). I also need to get Journey a work vest because he has outgrown the temporary backpack I have used ( not to mention the thing is old and starting to show wear and tear - had it since Ember first came to us! ). So between paying my aunt back for the kennel, needing a work vest, and needing some new leashes, that would be where the money would be best spent.

I didn't tell anyone anything sooner or link to my Amazon wishlist because I feel bad not being able to reciprocate the gift giving aside from things I can make, and at the moment with my wrist messed up it has put making things at a standstill, and I still have outstanding commissions I need to finish first.

Most of the things I actually want or need are too expensive. Camera or art related things to help me on the professional / income level. With other general expenses, I feel guilty spending anything I might get for my birthday to actually get anything for myself. I'd end up spending it on things needed for Journey or Ember or the cats. Or buying medicine or personal care items for myself or paying bills. Which is what has happened for many years.

The only real exception was my 40gal aquarium I got several years ago when we lived in Rochester and money was okay. I ended up having to give it away ( I left it with the people I used to work for ) because there was originally not going to be any room for it where I was going ( farm trailer ), and hardly any room left in the truck to safely transport it and its stand. I'm still sad I no longer have it. Watching the fish swim around and listening to the water was calming meditation zen for me, and entertainment for Raven to watch "fish TV". Now while there is room at my aunt's if I wanted one again, it's a matter of having the money for starting one again. I'd probably have to go back to a 10gal because anything larger obviously costs a lot more to purchase.

At this point, I'd rather invest the money in camera stuff. I have found it increasingly more difficult to take pictures with my DSLR because I am not able to hold the camera still and steady like I used to. It's even worse since my wrist injury at the end of last year, still not healed. The motion blur I am ending up with is horrid, and despite having a tripod, I can't always use it or don't always have it ready to catch a quick shot. I really need to invest in some image stabilized lenses, and I have been saying that and wanting one for years. But they are upwards of $500 for a good one. So that isn't happening anytime soon.

The only other personal spend I would put money out for right now is to get myself a new bike. My doctors recommended biking for exercise and strengthening that would be gentler on my body with my medical issues. I have a treadmill I use, but the walking/standing position gets to me and makes my ankles and legs start hurting more quickly, so I can't do it as long. At least with the bike, I am sitting and have a way to balance myself. If all else fails and I am away from home and have a bad spell, I have just rolled home and had Ember help pull when she was younger. Journey is going to be so big, dog carting would be easy for him. I had to leave my old bike behind when we moved ( it was a Walmart bike I intended to replace eventually anyway ). I hope the neighbor's kids at least got some use out of it.

Other stuff I need is clothing related. I'd buy a few new tshirts or shorts, have been needing to for some time, but the little trickle of money ends up going to other necessities instead.

So overall, the money being spent would be for something that is actually beneficial, not just a frivolous want. But I don't have the luxury either way. Just writing to get the thoughts out of my head and ramble some.

Wednesday, May 14, 2014

Medicaid Appeal Hearing

I guess the court hearing was good as can be expected. Went in, met the judge and everything, let the state party do their thing to state their case and determination, and then went on to offer my statements and information as to why I was appealing. Only to find out from the woman representing the state, when I mentioned my reason for doing it was mainly because I needed help and what they put me on in place of Medicaid was not adequate for my needs.... she seemed puzzled, and then says "It doesn't seem like you are perhaps aware of this, but the State dropped funding for Medicaid. So the program you applied for actually doesn't exist anymore."

Of course, this came as an absolute shock to me. No one ever told me that, and you would think maybe it would have been mentioned when I raised hell to the idiot handling my case when it was seeming like she dropped the ball repeatedly in the process of me sending information to the New Orleans office, so they could send it to Baton Rouge office. I also found out it didn't seem like the Baton Rouge office had actually received all the documents I submitted with my application that were relevant for the case, including documents showing proof of my handicap hang tags and paperwork for Ember being a service dog. Because both the judge and the woman representing the state seemed very confused and admitted none of that information had been there... yet I had mentioned it clearly on my application, that is NOT something I would neglect to bring up. I made sure to point all of this out and point out even in the copy of the medical paperwork the state did get, there were clear mentions on several key points things that should have easily determined disability, including mentions of reoccurring injury, workplace adjustments, and reduction of hours able to attempt work and physical therapy I went through with my back problems.

So the left hand didn't know what the right hand was doing, and I made it very clear my displeasure on the way the whole situation had been handled from the start and clearly a lack of communication in the fact that I didn't even know I was basically fighting a losing cause to begin with!  It's like... okay, why are we even having a court appeal hearing about this then? At this point even if the judge determines based on everything I gave her that they should have approved me, the program no longer exists.  The state woman did apologize, and gave the impression she planned to have that looked in to and addressed as to why I was never informed, and why they were missing crucial paperwork I submitted in my original application.

So it was a moot case because the program no longer exists, but it did make the state rep aware of potential issues between their office and the New Orleans office.She also promised to send me a packet of paperwork with info on the disability app process and see if she could get me info about at least getting prescription assistance while I waited ( which was something else the NO case worker was supposed to send me and never did ). The judge was really nice and seemed open minded and receptive to what I had to say, and the state rep was real pleasant too and apologized that I had been run through a loop hole in the whole process.
It'll take several weeks for the judge to review everything and make a determination, which is expected. It is a lot to read through.

So, basically right back to square one. No medical coverage, no nothing. For those of you who helped by offering statements, thank you thank you thank you from the bottom of my heart for trying to help in time for this case. Eric, Ash, Caine, Ashley, you all went out of your way to help and it is greatly appreciated.
Anyone else who still wanted to write statements, by all means please do. Or if any of you who already did wanted to write more to elaborate please feel free.
I will still be needing these statements and others for the disability hearing once that ball is fully rolling and I go to the local social security disability office with all the mountain of paperwork I am acquiring.
So while it isn't exactly good news we were all hoping for, and the sheer aggravation toward the defects of the system make me want to break someone's face, in a way it has just fueled my fire for this and now I am more determined to move mountains than ever before.

Thursday, May 8, 2014

Missing Medical Records

In the process of trying to get copies of my vast medical history back through 2005, I found that the private primary care clinic I went to when I first moved to Rochester ended up closing because the doctor passed away. This news saddened me because he was a good man and really nice and had a good sense of humor. The downside now is I have no means of contacting anyone else I saw at the clinic because I don't know where they ended up. Mayo acquired all of their patient records, and it was through them I made the request recently because some of the most important documents I need for my upcoming court stuff, that clinic had, including info related to FMLA coordinating they helped me with multiple times.

I got the CD that should have had the records on file from Mayo today ( thank you again so much Ashley for going there in person for me to get it and mail it so it would get here in time ), only to find it is only 38 pages long of "med chart" stuff, most of it you can hardly read, and none of the stuff I was expecting or actually needing.

My medical record with that clinic the last time I physically saw it, was upwards of 3 inches thick with all the various medical notes, paperwork, etc that it contained. Maybe Mayo only copied the chart info since my request was time sensitive, despite the fact I made it very clear I needed the entire patient record including those notes and FMLA related stuff.

If Mayo doesn't have all those files, I have no god damned clue what happened to them, and it is going to piss me off if they just got dumped for some reason as "irrelevant" or whatever, because they are supposed to keep records like that for 6yrs or longer.

I am worried now even if they do go look specifically for anything of that nature to make a new CD to send me, unless it all happens tomorrow, and I have someone go by Mayo and pick it up and mail it Priority, it won't make it here in time for the court thing next week. Because of the weekend changing the way the mail will process. Which means possibly having to have someone overnight it and pay a small fortune to do so.

I feel like crying over the whole situation. For once it would be nice if things would just work out smoothly.