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I'll probably be withdrawn, because this is one of those things where I am really not okay, no matter how hard I try to lie to myself or anyone else and say otherwise.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.

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.

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.

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.

Puppy Progress - 4 Months Old

Time flies. Journey is growing like a weed. He is almost as big as Ember now, in height and weight. His training is progressing very nicely. He's getting tons of exposure to new things, and new creatures. He's seen birds, reptiles, fish in display tanks, guinea pigs, mice and rats, and ferrets. He politely watches the cats at the adoption areas. He has also had a chance to meet a few pet rabbits at a distance, and a pet piglet!

Journey's ID tag mysteriously vanished into thin air the other day, so we had to stop by the store to get another. I took him and Ember both so he could practice politely walking beside her when needed. He's getting a lot better about it, but still has puppy tendency to want to play, which is normal.  It was funny because Ember was doing her "side work" position even though she wasn't in her gear or being asked to work, and Journey tried to get her to play and she told him off with a corrective bark because she was trying to work. Serious dog is serious, hehe. Clever girl.

Ember came home mainly to go with me to the hospital recently, and she did her job well as always. I took her back to the farm for more R&R while I do more focus training with Journey. He's been doing very well with his outings. Got his last round of puppy shots. Had another round of braving Walmart and Home Depot, all of which went very well and was met with polite curiosity.

I have met more people who acknowledge and understand that Journey is a working dog ( even one in training ) in the handful of times I have taken him to non-pet store locations, than in all the trips Ember and I have gone on together since we moved back down South. Which makes me so curious why people don't recognize the same thing of Ember when she has a professional work vest proclaiming she is a service dog. Is it some kind of mental thing because she is a black dog? You'd think the red service vest shows better on her. Maybe it's a breed thing? Maybe most people just recognize an Alsatian as a working breed, and just assume since Journey's in a place dogs normally aren't allowed, he's training/working. It just baffles me why so many people don't make the same connection when Ember is working.

While in Walmart I paused to let Journey choose between two bags of treats, to which he sprawled and grumbled at, and I asked "which one?" and he sniffed between the two, but indicated both by nudging. So I asked him again, and he did it again, and I laughed and told him he had to choose, and moved them further apart and he grumbled and sighed at me. I asked again, and I heard a laugh. I glanced up and realized a woman had stopped at the endcap of the isle and been watching the whole time and was grinning from ear to ear. Sure Journey wanted both!  I asked again and added "only one" ( not that he's actually learned that clearly yet ), and he looked up at me and he did that brow furrowing thing and tilted his head as if thinking it over. I asked again and offered both bags, and he finally picked one. The woman laughed and said it was the cutest thing she'd seen.

We finally managed to get into a training class with multiple dogs around Journey's age and size, who have had varying amounts of basic training as he has. Had our first class this past Thursday. Until now we have mostly just been lurking in pet stores multiple times a week, greeting friendly dogs, avoiding only the severely non-socialized ones. He's also met tons of new people, and seen all sorts of different clothing and contraptions. He's fascinated by upright dust pans and brooms for some reason. He finally got to see someone using an electric chair/cart at the grocery store. I need to practice with him around one sometime, and manual wheelchair and crutches too.

Journey's met different people in different work attire, various hats, aprons and shoes. We stopped to get food at Chic-Fil-A and everyone loved him. He ignored cleaning being done and when one of the workers offered to get me a refill. He politely greeted a plethora of random people both when we first arrived, and before we left. He kept his focus on me while I chatted with curious people about his training, and he was good about not greeting anyone till I told him it was okay. He even ignored a little boy who came and stood right by him. The little boy politely asked me if he could pet Journey before even trying to ( after watching other people pet him ) so of course I said yes since both of them did the right thing!  I thanked the boy so he knew he did good, and he was all huge smiles and thanked me and Journey.

We went to Starbucks and a barista who had helped me previously when I stopped by with Ember happily said hello, and then "you have a different dog tonight!" when she saw Journey. It was his first time there so I introduced him and everyone thought he was adorable. One guy who works there ( I think he's a manager type ) laughed when he saw Journey's ears were so big, and asked if he was part rabbit. I joked maybe eventually he'd grow into them, and he leaned over the counter for a better look and exclaimed "oh man, those paws are huuuge!".  We get a lot of surprise at how big he'll probably be, and it is never any less amusing. Journey saw his first tablet PC while there as some ladies played a game, and he watched them curiously. They found it amusing. We have been several times and so far he's doing amazingly well, no reactions to the blenders or loud things they use.

He's had random people come up wanting to pet him before asking, but normally just looks toward them and wags. He may move slightly toward them, but otherwise he will normally ignore people and lay quietly next to me unless I tell him he can say hello. He's even ignored the temptation of people thinking it was "cute" to call to him and make noises to get his attention, or encourage their kids to do the same. The times he has gotten distracted, I have been able to regain his attention before puppy tendency kicks in.

He has his moments. He's just a puppy and still learning, and most folks realize that. Many people have been impressed he is doing so well and so focused for such a young pup. He's developing quite a personality, getting to the age where he becomes more curious and independent.  Upcoming training should be interesting, working with distractions, duration, and distance. We'll also be building on foundation heel skills and working toward more advanced heel work. Looking forward to it!

ER Visit, Service Dog Public Access Issues, Medical Roadblock

Spent the whole day and evening at the ER, a total waste of time because I got nothing accomplished.

After weeks of trying to get in to the LSU Interim Public Hospital by calling the number I was given for "primary care", and being told "sorry, we don't have appointments available for primary care" and "call back next week to check", I finally got fed up with it and decided to try going to the walk-in urgent care clinic I was referred to by the small clinic that "carded me" for Ember.

Had to park at a garage blocks away from the building which was a pain to begin with. It's warm out and I am in pain and overheating. Thank the gods I had Ember and my ankle brace on. Ended up wandering from place to place because nothing was clearly marked and there was road work preventing ease of access. Only to be told "not the right place, go here instead" three times... and finally the last one was where it should have been... and they tell me to go across the street to the ER.....yeah, right then I knew it was going to be a nightmare.

So trudge up the ramp, exhausted and sweating like mad by this point from overheating. Grabbed the support handle on Ember's harness and gave her a pull command so she could help me up the incline. Noticed a security guard watching as we approached ( most places in New Orleans have them these days ), smiled and nodded, waited for a gentleman with a cane to go ahead of us, giving Ember clearly audible commands to wait and follow and the security guard extends his hand and says "Can I see papers for your dog?" and I am thinking - ( you see her wearing a red vest that proclaims "service dog" and you just watched her pull me up the slope/hill to the ER entrance )

I responded as we were walking by saying "She's a service dog, she's allowed to go anywhere I can go" and he asked again for "papers for the dog". I told him by federal law I wasn't required to have any and he wasn't permitted to ask, repeating she was a service dog. He got an attitude with me saying "Oh, so anyone can just walk in here with a dog and claim its a service dog if they want huh?"  I'm sure the frown and expression on my face probably said enough because someone who overheard rolled their eyes at the security guy. I responded "No, because lying about a pet dog being a service dog is against the law."

By this time I was a little aggravated and already dizzy and nauseated and the confrontation had drawn the attention of the entire ER waiting room with people staring. I again repeated myself that she was a service dog and by federal law I was not required to have any documentation for her, and he shrugged and said "This is a hospital, do you have papers or not?" taking a step closer in a way that made me think he was about to force me to leave, so once again I was forced to present the card I have with the ADA statute, stating I was doing it voluntarily and denying me or anyone else with a service dog could get them in trouble, "papers" or not.  He glanced at the card briefly and handed it back, muttering something about "not denying anyone treatment" and allowed us to proceed.  He wasn't even interested in hearing the actual law, like that other clinic I went to was (the one that "carded" Ember). He was just being a jerk. Which is why I am sorely tempted to get in contact with the right people and report the incident so no one else experiences worse harassment than what we experienced in the event they don't carry anything ( or forget to bring it ) to identify as a service dog team.

Then it was hurry up and wait. And wait. And wait. Hours later we moved to another waiting room. Then hours later, finally got a patient room, and finally saw the doctor and got xrays of my wrist. All the hospital staff I interacted with were amazingly polite and helpful, no complaints about any of them. They all had nice things to say about Ember and how well we worked as a team, which was refreshing after the jerk security guy and nightmare wait. The nurses and doctor were very nice and the xray technicians were all full of laughs and everyone kept peeking in to "see the dog" and go "aaaawwwwww" which was amusing.

So besides the wrist xrays, total waste of time. They confirmed I don't have any broken bones at least, but since this problem has not healed in the time expected, they put in a referral to the hand surgery center for a followup with a specialist to see if they can do anything else before resorting to surgery.  I asked the doctor about also getting a referral to primary care since I had been waiting so long to see someone.

She told me they don't have the ability to refer me to primary care, because for whatever stupid reason, that privilege was removed from the ER and many other departments. She told me I'd have to call in, to which I sighed and mentioned I had already tried. There are only two numbers to call, both directing to the same place. The same place I have been calling. That keeps telling me they have no openings for primary care, keep calling back. They don't have anything available till June or July. I told her I had been trying to do this since November.

She was sincerely apologetic and said she was glad to know that, because she planned to bring it to the attention of whoever decided to change the way they admit patients for primary care. Because the "new way" was supposed to make things faster, and it clearly is not.  I'd hate to know how long it took *before* now.

Maybe I got spoiled by Mayo Clinic, but after overhearing horror stories of how long others had waited ( including one poor woman who had been shot multiple times some time ago and had bullets lodged and surfacing and was clearly in pain having been there since 8am-ish ), I get the impression their whole system is screwed up.

The same is confirmed by a friend of mine knowing someone who just recently went to one of the clinics, and was waiting months for the appointment despite having diabetic complications of some sort.

So right back to square one with no primary care doctor or specialist under this temporary care thing, and since I was denied medicaid and now have to appeal for a hearing and probably go to court for that ( more on all that later ), I am at a loss.

With the increasing possibility I have had a seronegative autoimmune condition this entire time that was masked by the fibromyalgia, I really need to get in to see a rheumatologist and hope the possible years of it being missed haven't led to damage that could have been avoided if all these doctors hadn't just settled for lab results when the clinical symptoms were obvious and repeatedly questioned by me but brushed off by them because the bloodwork didn't "match".

Spring happy

Spring thunderstorms are love. Cool crisp breeze, rain, and the scent of sweet olive, wisteria, and citrus blossoms in the air.  ::Happy sigh::