What a difference a visit makes .......

I had an old friend stop in for a visit all the way from GA!  We sat and talked for hours.  Even though I didn't completely forget about my pain....It was placed on the back burner as we reminisced and talked and talked and talked some more.   Kids,  men, kids, boys, kids, friends, health, respect, faith, friendship, love.....Nothing in the world can beat a true friendship.  Nothing in the world can beat a visit from a friend.

I'm so blessed to have such wonderful people in my life.  It helps to reflect upon the good things in our lives and it's great to spend time with a friend.  I know I keep saying it but the truth is that I get pretty lonely sometimes and this visit means the world to me :)

Now as promised, a discussion on disability.   You would think that, if a person was to become permanently disabled,  the process to receive disability would be pretty simple so that those who need the help can get the help.  No...it's just like any other government run agency.   You have to fill out loads of forms and subject yourself to a complete evaluation on the limitations that have presented themselves to your lives.   It is a difficult process emotionally because it completely reminds you of all the things that you can no longer do and what you can no longer achieve.   They also may ask that you see one of their doctors...either the psychologist or a general physician or both.  I got the psychologist(which I never even saw a copy of the report....apparently you don't get to see that until a later point in the process)

Then after all of that, right off the bat(which means 6 months down the road), you are denied. The letter informing you of your denial is worded carefully....it states that they are not saying that they believe that I can return to my previous job but there must be something out there that I can do though they do not know specifically what that is.  They state that they are not claiming that I do not have the issues I do....but I could be worse.  It's truly a ridiculous letter designed to cover their tushes while hiding the real reason for the denial.  My age.

That's right, if you are under 55, apparently according to the government, you can't possibly be disabled.   So they deny you upon your first request.

At that point, you appeal their decision.  Then you fill out all the forms again reminding yourself of all the things you can't do.  But I think this is the important part, they request records from your physician.  Yeah...not until the appeals process....I find it strange that they can deny your claim without having those records but that's the truth of the matter.  I have been told that at this point(where I am now) only 20% are approved.   I'm hoping and praying that I am part of that 20%, though everyone has told me that I shouldn't expect it ....once again because of my age.   I would think that since they have my medical records now, it should be simple.  My doctor (a highly respected physician) has made it absolutely clear ,both to me as well as in the medical records, that I am permanently disabled.  He has been blunt with me because the truth of the matter is that I would trade almost anything in this world to be healthy again....even partially...enough to support myself and my family again.

Now I have been informed that if I am denied at this point, the next step is a court hearing.  There is a possibility that I wouldn't even have to physically attend the meeting seeing as, depending how far away it is, driving makes my pain worse.  Now here's the kicker, if I have to go to the hearing portion of the appeals, the courts are backed up.  The shortest amount of time I should expect before a hearing can be scheduled is currently a year....could be as long as 2 years.  We are talking after the first 9 months of the process.

So since my temporary disability is no longer in effect, I have been told to expect that I will have absolutely no money for at least a year and an a half.   That's the minimum amount of time.....and it's mainly in my case because of my AGE!    Its not because I'm not disabled....I have documented proof that I am.    It's because of my age and it truly is sad.

There has to be a better way to weed out fraud while caring for the people who truly do need the help.    You are entitled to it if you qualify based on your previous work experience.  If you contributed to the system for the correct number of years, you are entitled to receive a disability payment should u become disabled.  But the system appears to be so delayed that it is damaged...maybe even broken.   No one who is familiar with my case and with the system have any doubt that I will eventually be approved.  When I am approved, I will receive a payment that goes back to when I initially filed when I stopped working.  So...there isn't any savings for the government.   It's similar to an insurance claim., they will delay payment and deny payment in the hopes that you will give up and then they don't have to pay.  It's really despicable that even though they have all the proof they need that I am permanently disabled, that they still hope that it just becomes too much for me to handle and I give up.                                                                                                        
Well, I will not be giving up because unfortunately I don't have a choice....I"m permanently disabled.  

Chris Angel's Neck

I was sitting here watching tv(my second largest pastime since becoming disabled.   I saw a commercial for Chris Angel's newest stunt.  If you don't know who he is, he is a magician known for his over the top tricks. Some would compare him to a modern day Houdini.

Well, his most recent trick entails being placed in 2 straight jackets, hung upside down and have a 50 lb weight(or a rope that weighs 50 lbs (it wasn't really clear which).  All I could think was why in the world would anyone put themselves in a position to hurt their spine.   Maybe if they knew what my daily life is like, they would be more careful so as not to jeopardize their quality of life.

I know I haven't checked in lately.  I was under the impression that I was doing a good impression of a person handling all the latest stresses well.    You should see it, my impression, it's really pretty damn great. ......Except then I realized some little things. For example, I haven't been on here a while, I haven't spent any quality time with friends and family(couldn't bear the thought of picking up the phone even), had a hard time when people did call sometimes, I shower every other day and since my clothes are too tight on me  because I have gained alot of weight due to medication and lack of activity, I don't have any money at all coming in since my temporary disability has run out and my permanent is in appeals(if denied, could take another year before I get a hearing to have it approved...(.more on this will follow.) ).......  

Truth is the pain has been getting worse as we transition into winter.  I am in constant pain and occasionally will have a wave of fresh and stronger pain shoot through my body.  I'm cranky.  I'm tired. I'm sad.


So who in their right mind would jeopardize their life in a deliberate way that could end up like me?   Ok so you say your not in your right mind....or that the money is worth it.....trust me...it's not.....This is a horrible disease.    Well enough on ranting on Chris Angel.....I promise my next post will at least be an attempt at being more productive....Keep your eyes open for a frank conversation about the disability system.   (I know exciting right? )


Toodles for now

Dear Reader

Please forgive my absence.  It isn't that I didn't have anything to say. I think it's because I've had too much to say. Every once in awhile, it's all just too much and you need to take however long you need, in order to move forward.

I guess I should update you first. I went to the neurosurgeon to evaluate the tumor. He was able to discern the tumor on the MRI from a year and 1/2 ago. He was able to measure it and it is the same size as now. After reviewing my symptoms and my films, he made it perfectly clear that the tumor is in absolutely no way the cause of my fibromyalgia. Based upon the previous MRI Versus the current CT scan, the course of treatment is to watch it. If it grows, it would be a cause to remove it but at this time it is not recommended.

I had a tough time after that visit.  This is what I wrote a little over a week ago on my patientslikeme account.
"Since then, I have had to completely readjust.  As this disease has taken my life away in a slow steady pace, I had time to process each loss along the way slowly rather than the position I am in now.  I had hope for the first time.   That hope has been completely removed.  It's clear to myself and my doctors that I am disabled.  So much so that I truly am never expected to return to work.  I've lost my worth a little bit.  Not that I'm truly worth less.....but it feels that way lately.   And yes I purposely separated worth and less...because I'm not worthless....I feel worth     less.    And it's been hard to handle this time.  I'm trying to get back to good but it's going to take a little while.

I've also recognized recently that my doctor was correct when he had reported to me that a majority of fibro patients report a lessening of their condition in the summer.   Fact is I had  less "very bad" days during the summer.  Also, recently I have felt a significant worsening of the symptoms in the last week or so as the weather has been changing.  It's beautiful but I'm quickly going back to being unable to move prior to noon regardless of what time I went to sleep.  I'm sleeping about 12 hours a day the last 2 days. Getting up in the morning has also been excruciating."

All that being said, I actively made a choice to pull myself out of the slump.  I'm not saying that I am 100% fine because then I would be completely bullshitting both of us.  Truth be told though, I'm doing a bit better than I was when I wrote that entry. I took the dog for a walk last week.  10 mins and I needed to rest but at least I did it.  Then on Thursday, I was able to get up early enough to make it to my water aerobics class that I  haven't been to since the spring.  Granted, I ended up being knocked on my @ss for the rest of the day but that's how these things go.  I've had some bad days lately but I've also had moments with my family that I can hold close and keeps me going.  One step at a time is the only way to walk....so that's how I'm trying to take it.

If I haven't explained what "patientslikeme" is , here goes.  www.patientslikeme.com   An extremely helpful website that allows you to track your disease(s), your symptoms, your mood, your treatment so that you and hopefully your doctor can look and compare to see what is working for you and what isn't.  It also acts as a support group because you can interact with other people who share the same disease as you.  Additionally, you can look to see what's working for other people and look into clinical trials in your area.  I can't speak highly enough of this site.  It gives you what you put into it results wise.  Additionally, I bring a printout when I go to see my doctor that let's the doctor see how I have been doing since seeing him last.  He loves it!

Be Warned: Religious Opinion Enclosed.

Remember to tell the kids this......Every once in a while, watch a black and white movie.  They had to act back then....actually put on a show.  There was a really great story....similar to a book on the screen...There's nothing like it.  There are so many special effects today that are really fantastic and enjoyable....because of that, you can get away, for the most part, with having mediocre acting.  It wasn't like that back then.  So every once in a while, watch a black and white movie.  

These are the conversations I find myself having with myself.   Reminding myself to "tell the kids this:".

I'm going to do what no normal person would do publicly....I"m going to talk about my religious/spiritual beliefs.   Then again, I'm not normal.  I have a brain tumor.  I am finding that it can give me the right to do things most normal people would never do...I need to be very careful with this new power. I like to remind myself to use my powers(whatever they may be) for good....always for good.  Always try to choose the "right" thing...the morally good choice.  I'm human so as we all know it's extremely difficult.  That's why we have Saints.....because we can't believe that a human being can be THAT good.  I digress.....

For my whole life, I have believed in God.  It's never been a ? of is there or isn't there.  As a child, I felt an extremely strong pull to do the right thing(and NO, the end of this story is not that I am in any way, shape or form a Saint).  Whenever I did something that felt "wrong", I felt an extreme amount of guilt about it.  Even if it was just a small thing like not speaking up when someone said an unkind word to another person.

 As I got older, I was introduced to the church.  I was Christened Presbyterian.  But eventually, I moved and didn't get a ride to that church and stopped going.  From there, I didn't go to Church for many years.  Now, that doesn't mean that I didn't believe in God by any means.  During that period, I just didn't go to church.  

Then I left my abusive ex-husband.   Once I got settled into my new town, I went to church.  A Presbyterian church,  I remembered all the songs that I had sung in the choir and at church camp.  I remembered the warm feeling of safety and community.  I was so happy to be there again.  And then the pastor spoke.

Logically, I was able to listen to the sermon and understand what the pastor was trying to say.  Objectively, he meant no harm whatsoever.  Emotionally, I was absolutely destroyed.  The pastor was speaking about marriage.  And how the Bible says that the husband should provide for and protect the family while the wife should trust in her husband and listen to what he says.  I heard how the Pastor's words would be twisted and manipulated by an abusive man to keep a woman from believing in her own worth.  I couldn't stay.  I wasn't strong enough yet to speak with the Pastor so that he could learn how to be careful with his wording so as not to support an abusive man's behavior.  I never went back.

Years later, I started going to a Catholic church looking for that sense of safety and community.  I went for about 6 months when I learned just how much the people in the church loved to gossip and spread falsehoods about people for no other reason than they enjoyed the drama.  In short, they weren't behaving very Christian-like.

I know that my opinion on this subject is different than many other people's opinions including my own mother's opinion.  But if you notice the word that I used....it's opinion.  That's all it is...no more and no less.  I can not speak to know who God is, which God is the "right" God or even if God truly exists.  I can only speak to how I feel and no one else.

I do believe that we are all part of God....every single living "creature"...including plants and animals.  I believe that when we die, it is our soul returning to God.  I think "hell" is our own individual realization of what we did here in this life. This is as far as I've thought of it but it feels right.  That's as far as I've ever needed to think of it.

In other words, live your life the best that you can. Do your best to treat every living thing with kindness & respect.  Do your best to minimize the amount of harm that you do in life. Treat other's how you would want to be treated because in the end it doesn't matter what they have done to you.....it matters how you reacted to it.  They have their own "judgement day" where they will have to face all the things that they did in this life...it's not my place.

I don't believe that your sexual orientation has anything to do with God or hell or heaven.  No matter who you are in a relationship with, you choose to treat your partner right or treat them poorly....and that's the important part.

God doesn't go around giving out diseases nor does he usually go around taking them away (I can't discount miracles....those are all God..but they are extremely rare).  I don't believe that praying for what we want will get it for us.  I believe that God is too busy helping those who truly need it to waste time doing things we should be doing.  He's not going to give you that new job, you need to go out with a positive attitude and work hard to get it.  He's busy guiding the hand of a doctor of a child in heart surgery to worry about most of our small issues.  It's not that I don't believe that prayer helps.....it's that I think we need to keep our prayers for the big issues.

I am thankful for this life.  I don't want it to end any time soon.  But I also have come to believe that God has a sense of humor much bigger than any of us can even imagine.  I don't think she's cruel.

But the truth is:
I planned to go to college.....
I planned to get a degree to teach or be a nurse....
I planned to wait to get married until I had my career set......
I planned to then get married and have children and a house with a white picket fence....
I planned to raise my children with my husband & their father.....
I planned to always be healthy.....
I planned to be in love forever.........
I planned to grow old as a beloved teacher and retire ......
I planned to live in happiness & good health until I died in my sleep.....

God had plans of her/his own........
And I've gotten used to just going along for the ride knowing that....
Even when everything isn't alright, it will be in the end.

So, I have a brain tumor and no matter what happens tomorrow....I know everything will be alright.

Catch-up

Since I last wrote, a few things have happened.

I've told basically everyone at this point.

It's hard to capture the feeling of panic that had set in while I was looking for doctors.  I spoke with my main doctor who referred me to a practice that works with the hospital that I was told is the best.  I scheduled an appointment.  The receptionist, who was extremely helpful, told me that I would need to get special permission from my insurance company in order to see them as they are out of network.  I contacted my insurance company....I have no out of network benefits.

Ok....so let's find a doctor that works out of that hospital with the awesome reputation that takes my insurance.....Crap!  There are none....not a one out of the best hospital.

I call my neurologist office, Dr. Monck, and speak with an extremely helpful young lady there.  She refers me to a couple of doctors. I explain to her the best way that I possibly can.....My insurance isn't allowing me to go to the best doctor around.  This isn't like removing a mole.....we are talking about BRAIN SURGERY here!  (I was nice...but I definitely was in a panic when I spoke with her.) She quickly let me know that one of her good friends from high school had gone to see one of the doctors that she was referring me too and she is doing great.   She has a lot of patients that have gone to him and are all doing well.  In other words, she calmed the crazy lady down.

From that point, I did some research....what type of reviews are out there with this doctor(because only one of the 2 doctors were in network)?  Basically....the first doctor had received a 5 star rating out of 5 on healthgrades while the second doctor received 4 and a half.   Ok...that's not too bad.  So I call the office.

Keep in mind that I also have a background in medical & dental insurance and front offices.  I'm trying really hard to stay realistic and positive.  The fact is that at this point, I have hope.  Prior to this diagnosis, I had none.  I was doing the best I could to stay positive and deal with it but I didn't really expect that things were going to get better....what I expected is that I will get used to it.   Now, I have some hope.  It is possible that the fibromyalgia is my body's way of screaming at me that I have a brain tumor.  It's also possible that if they remove it, my fibro just may go away.  ....It also may not and I do acknowledge and respect that ....but there is hope.

So when I called to schedule the appointment with the neurosurgeon and the receptionist(I'm sure she is so much more but obviously I don't have her title.....just have to give a shout out because I've been there) tried to dissuade me from scheduling till after I see Dr. Monck.  I explained to her that we were looking for a possible tumor about a year and a half ago when my symptoms first emerged.  We didn't find it then but we did find it now and my symptoms have progressed.  I would rather schedule for a consultation even if it's just to meet with the doctor and get his opinion than wait and have to wait longer later.

The truth is that even if they decide to watch it.....there is always a chance that things will progress and they may have to quickly move to remove it.  I'd rather have a doctor who has seen me, spoken to me, knows who I am and I have chosen than wait for an emergency and end up with any Tom, Dick or Harry.

So she scheduled me for a few weeks from now. I go to see Dr. Monck tomorrow.

That's where I am at this point with regards to my tumor.  My friend who has known me the longest in my life and who truly is the best in the whole wide world asked me this morning if I have named my tumor yet.....I haven't ...but now I feel compelled to get to know it a little better to give it a good name.  Hopefully, my doctors can help me know more about it ;)  

Amazement

I told the children 2 days ago.

They had been guessing what the family meeting was about for days but none of them had guessed brain tumor.

Truth of the matter is this:  I can see myself in my children so very much.  I sat them down. Immediately offered them milk shakes, which their response was to promptly asked me what's going on because it was obvious by then that it was bad news.

It amazes me that after I explained ,that it was a brain tumor and all that went along with that, my oldest son's response was to state" so what you're telling me is that there is a chance that the tumor has been causing your problems and if they take it out you would get better".  How many people can say that when faced with adversity their children find the positive within the situation? So at this point it appears as though everybody's ok. My son who is clinically depressed, is thinking positive!

I told my daughter is that I need to make a list. This list is to contain all the things that I want to do when I'm back to my self. Hiking, walking, swimming, traveling, I'd need to find a new career..... To which my daughter promptly said " don't get carried away. We can't get our hopes that just to be disappointed if it doesn't work". My daughter who suffers from anxiety, is being realistic!


A couple things have been different the last two days. My youngest son has called me a couple times. He asked to go to dinner. He asked to come on a trip with his sister. It seems as though my youngest son, who seems to avoid certain issues, wants to spend some extra time.

I am very proud of my children, words really don't express it. I try to stay positive. Through all of the difficult times that myself and my children have gone through, I refused to give up, to let things drag me or my children down. Which brings me to today, my children learned well!

August 30, 2013

The Big IF

I've decided to tell the children.  They are young adults at this point.  Reality is that I want to give them time to wrap their heads around the fact that I HAVE A BRAIN TUMOR....whoops sorry...that keeps happening but not as often as last week.  So as I said, I want to give them time to adjust and time to realize that everything is going to be ok. I'm working myself up to doing it though. Then IF....see it's a big if....IF the doctor wants to operate, at least they have had time to adjust to it and don't have it thrown right in their lap that oh...so btw, your mother has a brain tumor and is going in for brain surgery...Whew...That doesn't feel like the right thing to do ....Hence, I have to tell the children.  I've told 2 out of 3 that we need a family meeting.  We are having our Summer BBQ today while also celebrating my one son's birthday.  I don't want to tell them today.  I'm going to have to get them to figure out their schedules so that I can get all 3 of them in the same location again very soon.


On a similar note, I picked up my CT scan to bring to the neurologist.  While at the hospital, I asked where is known for their neurosurgery in the area.  This led me to the "Brain Tumor Center of NJ"(http://www.atlantichealth.org/neuroscience/our+services/services+by+condition/brain+tumors/) .  Sounds serious.  I"m going to call them on Monday and get an appointment with a neurosurgeon.  Figure why wait another 3 weeks after seeing the neurologist for an appointment when I know she's going to want me to go for an eval by a neurosurgeon.  Besides, even if they just watch it for now, God forbid something happens later, at least I will already have a doc to call.

Well, off to finish getting ready for our BBQ & shower.....hopefully, I can bend down far enough to shave my legs today...