Insurance, Case Managers, Pharmacies O'my

I have deep respect for case managers and all that they do especially mine and dealing with me and my confusing antics.....note to self: learn medical lingo and remember it. Never ask for what you want but for something similar that insurance will cover.

I have had a very busy week and have in my opinion annoyed at least one of my daughters case managers (even if they said I didn't). My daughter takes some special medicine and the supplies provided with it don't work for my daughter since her dosage is smaller. After a week of keep saying the wrong word and cancelling orders since I realized that it was going to be more expensive than it should have been. So today was an epiphany...I realized why everyone was having a problem. The insurance said OK for one thing but I had kept asking for something else and didn't realize that it wasn't covered that way. I sent my poor daughters case managers on a wild goose chase which was my own fault (also sent myself on the wild goose chase). As we kept asking for the wrong thing....pharmacies did not want to provide the way I was trying to get it but would after days of research and asking different questions provide a different product which would do the same thing...just had an extra piece that would have to be removed to work.

Boy am I tired...I have been on the phone everyday calling different companies trying to see if I could get the item for my daughter since she uses a lot of the item a month....to no avail. But this Friday after receiving an insurance paper stating what they were approving to cover I realized that I had spent the week trying to get the first part of the item, but if I asked for the first part and the second part then I could have gotten it and had a reliable supply to provide it for my daughter.

I have to give it to everyone...they did there jobs and didn't budge. I am happy to know they are there to make sure I don't do something wrong or provide my daughter something wrong. Now I just have to hope everything works out and what I have been told is true and I can get the items for my daughter more easily since I now know what to ask for. And, hopefully the case managers don't have to hear from me for a long while...I hope...although my daughters medicines are coming up for renewal....but luckily it should be easy to do a renewal and add more refills to the prescriptions.

I would like to thank those who work with insurance (at least mine right now....they have taken very good care of my daughter so far), Case Managers that have been very helpful and very understanding of a parent like me, and I would also like to thank the pharmacist that have dealt with me and my trying to understand and figure things out.

Another Visit

Another visit down and lots more to go. We had a counselor visit for Emily today and it went fine. She has some anxiety but not much they can do to help except help us understand it and try to mediate it more and better. We were very glad to find that we were the only ones seeing things and not just imagining them. What Emily has gone through the past several months has been a great deal for her and our family. Everything has changed and we are working through all the changes and coping the best we can as we try to help her understand everything that is going on and why she has to have a painful shot everyday.

As posted before I appear to be allergic to dogs and cats and have been trying several different medicine to counter it to keep the dog and hopefully make things easier on me. On my fourth medicine so far which seems to have some side effects but not to the degree that the others have had on me. But, I don't like the effects that I am feeling and may just have to revert back to my original medicine and cope the best I can with everything. The puppy has been great for everyone in the family and I can not take something that has helped our family away from our family. I am moving ahead in the direction of keeping the puppy until it becomes too much of a problem for me and even then I will probably just try to work through it.

I love my wife and children so much.

Emily had a great day yesterday but after words was just asleep for a long period could not try anything else we were wanting to do with our visitors but eventually we will get those things done I think. Currently we are working on getting a video my wife made uploaded. I want to upload a certain way but so far the website does not agree with us. But shortly it should be up.

Tiredness

Tiredness....we all get that from time to time when we do a lot of work and use up our energy. But, I guess the question is that suppose to be the case for a 5 year old when she does less than 30 minutes of PT and be tired for many hours afterword?

It has been great for Emily to have had a mommy day at the ballpark. She enjoyed it so much. The day before I had to take her and her brother with me to her PT and a general surgery followup. Unfortunately they closed the top deck of the parking garage and there was no where to park. If I had a handicap placard I probably would not have been so worried. But I had two children and the only option I knew of was a far away parking area with shuttle service I believe but I had to take a stroller and other things with me since it was also lunch time. Luckily I was very blessed and found a parking spot on the bottom floor before I left to try and find the other parking area and figure out if they would let me on with two children and a stroller.

We have been very disappointed lately with the help we have been supposedly receiving. The insurance is great and do great things for us. They provide the medications (some after a fight), hospital stays (pretty penny that was for sure), Outpatient Care (PT/OT), and etc. Don't get me wrong. Just if they had any options for our daughter would be nice. Were told after we got extra coverage that more things would be covered like help at home for ems.....that seems to not be true so far. If my child was autistic then they would provide help in the home but it seems that she isn't, so some of the supposed extra service actually is not allowed for us I guess. We were also signed up for getting deliveries of supplies by our doctor...well so far they will not deliver and won't tell us why but have to keep talking to our doctor and insurance about it and won't let us know why even after we ask.

The insurance so far has been great about providing PT/OT...although both providers they provided would not work with Emily because of her age. So, we had to find new ones and call and get them approved through the insurance. Every one we talk to says oh...its just arthritis you don't need anything for that. So, we have to fight for everything it seems so far. I guess that is the great part about having a child with a rare disease. No one knows what to do so they say no to anything for the most part until you prove it will work and it's proven to work.

Everything is tiring..not sleeping much at night for one reason or another. Having to entertain a energetic child and Emily also. I don't want them just watching TV or movies or anything but at times it just seems to work while one child is played with until the roles are changed. We have started some mommy school daily homework during the day that they have to show mommy when she gets home from work. It helps them grow and keeps them off things. Spend great amounts of time getting them to play especially Emily she just doesn't seem to want to since she first got sick before she was diagnosed.

Boy it would be nice to get things provided for Emily and to get her playing and somewhat at the lest back to her old self, but that seems far of. We sometimes get a couple minutes of that perception back but then again it is gone the next second. She seems to come the most alive during her swim therapy when she can be more playful without holding her own body and can let it go in the water.

Crazy things....who knew

For those of you that know me may know that I like dogs and usually had some pet around....except after getting married (didn't have anywhere for them). So, after much prying my wife got me to let her get a dog for Emily and Thomas (she had never been much of a dog person before this). Well, besides all the costs that send me worrying sometimes because I want to be able to provide something for my family and make sure everything is paid and something if possible is saved at the end of each month. Well, I was hesitant but gave in and was feeling all right about it. We can afford it but have to curtail other things which are do able.

But then came the surprise to me. Even though I grew up with cats, dogs, ferrets, birds, hamsters, horses all my life I found out something very strange after having our puppy home for a day. I am Allergic to cats and dogs. That is where the sad part comes into play. My children and wife love the dog, and I like the dog also. Made it to the doctor the other day and given more powerful allergy medication. So far I have itchy eyes still and a runny nose now. I am hoping that it is because the medication have not taken effect yet. My doctor didn't really want to give me the medication just told me to get rid of the source of the problem (what I got out of what she told me...not her exact words). Unfortunately I am in a rock and another rock as to what to do. I take away the dog the kids will be sad and Emily may transgress from the direction she has been going. And, I do not want her to be less motivated in moving. So, I am trying to toughen it out and survive as much as possible so that my family can have the thing that they want and need. I play with the dog since she tries so hard to get me to pet her. I wash my hands and everything and keep away from my face but doesn't always seem to work. I think it is working and everything will be fine but usually by evening time I start getting hit by everything (I think the medication I was taking wasn't lasting). I usually go to bed with burning/itching eyes but seem to be at least get an hour or two sleep...I have to be getting some sleep since I am awake right now. Sleep has been short for me and I spend the nights trying to get back to sleep many times but I am awake so I must be getting some.

I love my children and wife and want them to be able to have the things they want or need. I did splurge on myself about a month or two ago. I got a new pair of shorts on sale for 16 bucks although I have to admit I thought that was too much for them but cheaper than most others I have looked at. I try to make do with what I have so my wife and kids can have what they need or want. I am not complaining don't get me wrong and take it that way. I like to wear things out when it comes to cloths. If there ain't holes in the shorts at the wrong places then there is no need for new ones. If the shoes are almost fallen apart then they are still good....when the shoe separates from the sole and are no longer considered a shoe then it is time to replace them. But, I do hate when those times come and I have to try and budget out some money for myself.

Hope to keep the dog but only time will tell how I will react to her over time and how well the medicine will help if any.

A late night thought....

Hello all, I don't know why but I am up late. I keep having thoughts go through my head about everything that has been going on and while on Facebook remembering all the people I used to see and not see anymore.

This has a point leading to my daughter....trust me.

Those who know me would probably say I was quiet and usually in the background. And, I would agree. I used to try and stay in the background of most things not being noticed. Just listening to people and being around people at times. I tried to keep my life as private as possible. And, in that end it was a downfall for me. I missed the opportunities of making new friends and getting to know others better.

But that is all changing. A little at a time but is changing. When my daughter was first sick I didn't want anyone to know. I didn't think it was something too serious at the time until after days of tests coming back negative that I truly did start to worry for her and realizing it wasn't something that would go away easily as hoped.

It has started me on a quest to open up and share with others what a terrible disease she has received. But those that know my religion know that life is about trials and overcoming them. This is like any other trial in life, but this trial will have to be managed for my daughters entire life. We have been very blessed by family and friends and new acquaintances. My loving wife has a wonderful job that has given our daughter access to the medical treatment that she needs at this time. We have been so blessed.

It has made me want to show a more public side....more open to conversation about things especially when it comes to what my daughter is going through. It is a terrible disease that there is no cure for but with the proper help and care can be managed for the most part. There will always be up and down days. We will have to learn as time goes on all of the boundaries we must work on and try to break when possible. Not all will be broken but some may be. As new advancements are made available hopefully children around the world will not have to worry about these diseases as much and there will be less side effects.

So, as I search my past and think of the future I hope to be able to make my children proud and be more talkative like there mother. I love my wife and I love my children. From every trial there is something to learn and advance our knowledge about. If you let a trial stop you, you will not get far. I have had that problem in the past too much in the past and will not repeat anymore if possible (after all we are human)

Update in vain Cont.

Well, the extra care we were supposedly suppose to be able to get is not true anymore. They have denied it even after supposedly asking for what they said it had to be. What is the point of all this striving to provide some/any care for our daughter. So, far we have been told it should be covered and then told no and that this is part of our special coverage but don't qualify because our daughter isn't considered autistic, or other things.

So, what is the point of finding out one thing that we should be covered for but end up being we are not....now we have to try and find out why denied and fight that. It's the best way to provide for those who work for you and so much more. But it is good insurance....just if you have something more mainstream. But we will continue to fight for our daughters viability to thrive and grow.

I want to know what they are going to provide for her since so far it hasn't been much of anything. Hopefully that will change soon and we will be able to get things taken care of.

Hungery Monster

Have you ever seen a hungery monster? I have lately. Before Emily was diagnosed with SoJIA she was not a big eater and did not each much even after seeing neutricionist and so forth and trying to get her to eat different things. She is not a picky eater but just was not hungery and started eating a little more when we found out she had Acid Reflux and got medecine for that.

Now that she is out of the hospital and on all her medications......including the steriods. Well, I'd have to say she is a hungery monster eats to no end if we let her. She has simple request all the times. Top Ramen with Egg, Cereal (Frosted Flakes), Pizza (only certain kinds with just white cheese...white cheese required), and Pumpkin Pie (Certain brand). So, we try to moderate how much she gets...she has to wait between each for her stomach to hopefully settle then she would not need the next item along with requiring healthy options like carrots and other healty items.  She fights us on the healthy stuff sometimes but others not as much.

The steriods have changed her eating habit greatly.....I don't know if for the good or bad. At this rate I am thinking for the latter but will have to see. To me it appears that the steriods is the only thing keeping her body in check.