Yesterday (I kid you not.) we received a letter from the Dallas VA notifying Robert that he had an appointment with the Endocrinologist regarding the tumor in - wait for it - August. I can't even adequately express the variety of emotions that I felt upon reading that.
We figured a one to two month wait. That's about average for a VA specialty consult. We were prepared for that. But FIVE months? And that is being incredibly fair to the VA considering that his FIRST abnormal labs were in October (these should have caused a referral to the specialist) and his FIRST abnormal CT of the brain was in December. So, depending on how you look at it he's really waiting between 8 and 10 months for the referral. Sigh...
So, today, I called his FRC and we spoke about the time frame issue. He shared that he'd been stonewalled by the Dallas VA also. They would not return his calls. He promised to try again on Monday. I then called Fee Basis thinking that they could tell me if (like in Phoenix) the appointment was an extraordinary time frame away the appointment could be fee basised out. They told me they just pay those bills and gave me the number to the Benefit Counselors at the Regional Office in Waco.
This wasn't the correct place for me to call either but I got the nicest gal on the phone. She let me tell her the whole story and even tho it was not her job (even remotely) she asked me to hold and talked to her Supervisor about who I should be calling. When Shawna (the sweetest person at the VBA today.) came back on the line she stated that her Supervisor would like me to give all of the pertinent information because she was going to call the appropriate people herself and get this ball rolling because they both felt that the wait had already been too long and five more months was just not right.
Color me shocked and awed. Pleasantly so. I gave Shawna the information that she requested and thanked her profusely for her professionalism, her do more than is required attitude and her kindness. I asked her to thank her Supervisor, from me, for the same things.
These ladies did not have to help me. They could have done what hundreds of VA employees have done for months - told me it's not their job. But they didn't. And I am extremely grateful. What a wonderful way to start a weekend. the first in a LONG time that I am not completely stressed to my breaking point.
Thank goodness for angels on Earth. <3
Please leave me your words of wisdom!
Friday, April 12, 2013
Monday, March 18, 2013
In contrast...
Well, Robert had his follow up CT (with contrast) this past Saturday. The tumor has grown. Now we wait for the appointment with Endocrinology to see what they decide is the treatment plan. Luckily, this type of tumor is very treatable. Options range from medication, to surgery to radiation. It all depends on size, position, level it has invaded the surrounding tissue, etc.
I'd be lying if I said that the stress has not gotten to us. And there is that pesky ex wife and her money grubbing mother. Not that I think they will get anywhere with their desire for his money but just the stress of having to hire a lawyer - well, it couldn't have come at a worse time. Robert has fallen 6 times in the last 10 days. He has constant headaches. His VA social worker and his AW2 both have moved on to wonderful new opportunities in their careers but have yet to be replaced. And there is that damn thing growing in my husband's brain.
When Robert is stressed he tends to shut down and act like... well, a six year old. I hate to say that because I love him so much but he is impossible to reason with during times of stress. If I complain about the stress in our lives he will automatically jump RIGHT to saying he's filing for a divorce. Gah... All marriages have stress. All spouses do not threaten to file for a divorce because their spouse complained about the stress level.
And so it's been for two weeks. Utter nonsense. I finally just acquiesced and said that if that's what would make him happy I would not stand in his way.
Today he sent me a text. From the bedroom. Ten feet down the hall. It read, "I have come to the realization that in order for me to continue in this marriage, I must try. Therefore, this is what I will do. Although, from time to time, I may fail. But I will get back up and try, again and again."
It's funny that he wrote it that way because I have always said, in regards to his PTSD, as long as you are trying to get help (even if it isn't working) I will be here. I think he finally got what I've been saying all along. Marriage is built not only on love and trust, but on mutual effort. And that is a big dog gone step for my undemonstrative husband!
Some days you just KNOW why you keep trying so hard.
Please leave me your words of wisdom!
I'd be lying if I said that the stress has not gotten to us. And there is that pesky ex wife and her money grubbing mother. Not that I think they will get anywhere with their desire for his money but just the stress of having to hire a lawyer - well, it couldn't have come at a worse time. Robert has fallen 6 times in the last 10 days. He has constant headaches. His VA social worker and his AW2 both have moved on to wonderful new opportunities in their careers but have yet to be replaced. And there is that damn thing growing in my husband's brain.
When Robert is stressed he tends to shut down and act like... well, a six year old. I hate to say that because I love him so much but he is impossible to reason with during times of stress. If I complain about the stress in our lives he will automatically jump RIGHT to saying he's filing for a divorce. Gah... All marriages have stress. All spouses do not threaten to file for a divorce because their spouse complained about the stress level.
And so it's been for two weeks. Utter nonsense. I finally just acquiesced and said that if that's what would make him happy I would not stand in his way.
Today he sent me a text. From the bedroom. Ten feet down the hall. It read, "I have come to the realization that in order for me to continue in this marriage, I must try. Therefore, this is what I will do. Although, from time to time, I may fail. But I will get back up and try, again and again."
It's funny that he wrote it that way because I have always said, in regards to his PTSD, as long as you are trying to get help (even if it isn't working) I will be here. I think he finally got what I've been saying all along. Marriage is built not only on love and trust, but on mutual effort. And that is a big dog gone step for my undemonstrative husband!
Some days you just KNOW why you keep trying so hard.
Please leave me your words of wisdom!
Saturday, March 2, 2013
And the results are in!
I have been very remiss in my blogging. Right after the Holidays we got word that my husband does have a pituitary tumor. It kind of knocked me on my butt even though my last post was so positive.
I can't even count the number of times we've braced ourselves for really bad news only to have the results come back as negative. I think that is what we thought would happen this time. Normally, I am the strong one, holding it together for the two of us. I lost it. I know these tumors are 99.99% of the time benign. I know they are super treatable. But all my brain was hearing was that my husband, the man I love to the ends of the earth and back, has a tumor growing in his brain. But that wasn't the worst of it. The nurse who was informing us of this news (over the phone) let us know that the civilian endocrinologist had changed his mind - he would not be doing *any* treatment. He would see Robert in three months for lab work. I was aghast. I was incredulous. I was devastated. I demanded to know why the doctor would leave something like that to grow after all of the reasons he had given in the initial visit for removing it. The nurse simply said she didn't know, asked if we had any questions and before we could respond said okay then and hung up. I ran out of the room and slid down the wall and sobbed.
Two hours later, after I had composed myself, I called the office back and demanded answers to our questions. Specifically how a reputable doctor could have a nurse deliver news like that over the phone with no ability to answer the questions that the doctor must have known we would have. I informed them that it was unprofessional. The nurse I was speaking to said she would deliver the message to the doctor. I asked if he would call me back? She said probably not.
With this I called the VA and spoke to Robert's polytrauma doctor. He advised me to get all of the records including the films and get them to the VA so he could initiate a referral to endocrinology there. I called the civilian office back and informed them we would be transferring care to the VA endocrinology doctors and to have Robert's entire record (to include nurse and doctor's notes) ready for pick up. At that point the nurse asked me to hold and suddenly the doctor was on the phone. The conversation that ensued can only be described as bizarre. This man is on the largest of ego trips and does not like being told that he will no longer be following a patient. Tough.
The next day we went and picked up Robert's records and two copies of the films, one for the VA and one for ourselves.We are currently waiting for his VA CT - after seeing the civilian one they felt a new one was in order for quality's sake. Once the CT is done he will have his appointment and we will know the treatment plan.
Add to that one of Robert's ex wives re entering our bubble last week and I am stressed to the point of breaking. She facebook emailed me with wild accusations about Robert and then stated that her mother told her she is entitled to half of Robert's retirement. Umm, no.We all know the rules for that to happen and she doesn't even come close to meeting them. And Robert was only in the Army for 5 years 6 months when he was medically retired. AND, he had to waive all of his retired pay in lieu of VA disability pay. Sadly, this woman is numb as a pounded thumb and does not seem to understand any of this.
I saw a jpeg on facebook two nights ago that said, "God only gives you what you can handle. God must think I am a BAD ASS!". Yup, God MUST think I am a bad ass. I've got a secret for you... I'm not.
Please leave me your words of wisdom!
I can't even count the number of times we've braced ourselves for really bad news only to have the results come back as negative. I think that is what we thought would happen this time. Normally, I am the strong one, holding it together for the two of us. I lost it. I know these tumors are 99.99% of the time benign. I know they are super treatable. But all my brain was hearing was that my husband, the man I love to the ends of the earth and back, has a tumor growing in his brain. But that wasn't the worst of it. The nurse who was informing us of this news (over the phone) let us know that the civilian endocrinologist had changed his mind - he would not be doing *any* treatment. He would see Robert in three months for lab work. I was aghast. I was incredulous. I was devastated. I demanded to know why the doctor would leave something like that to grow after all of the reasons he had given in the initial visit for removing it. The nurse simply said she didn't know, asked if we had any questions and before we could respond said okay then and hung up. I ran out of the room and slid down the wall and sobbed.
Two hours later, after I had composed myself, I called the office back and demanded answers to our questions. Specifically how a reputable doctor could have a nurse deliver news like that over the phone with no ability to answer the questions that the doctor must have known we would have. I informed them that it was unprofessional. The nurse I was speaking to said she would deliver the message to the doctor. I asked if he would call me back? She said probably not.
With this I called the VA and spoke to Robert's polytrauma doctor. He advised me to get all of the records including the films and get them to the VA so he could initiate a referral to endocrinology there. I called the civilian office back and informed them we would be transferring care to the VA endocrinology doctors and to have Robert's entire record (to include nurse and doctor's notes) ready for pick up. At that point the nurse asked me to hold and suddenly the doctor was on the phone. The conversation that ensued can only be described as bizarre. This man is on the largest of ego trips and does not like being told that he will no longer be following a patient. Tough.
The next day we went and picked up Robert's records and two copies of the films, one for the VA and one for ourselves.We are currently waiting for his VA CT - after seeing the civilian one they felt a new one was in order for quality's sake. Once the CT is done he will have his appointment and we will know the treatment plan.
Add to that one of Robert's ex wives re entering our bubble last week and I am stressed to the point of breaking. She facebook emailed me with wild accusations about Robert and then stated that her mother told her she is entitled to half of Robert's retirement. Umm, no.We all know the rules for that to happen and she doesn't even come close to meeting them. And Robert was only in the Army for 5 years 6 months when he was medically retired. AND, he had to waive all of his retired pay in lieu of VA disability pay. Sadly, this woman is numb as a pounded thumb and does not seem to understand any of this.
I saw a jpeg on facebook two nights ago that said, "God only gives you what you can handle. God must think I am a BAD ASS!". Yup, God MUST think I am a bad ass. I've got a secret for you... I'm not.
Please leave me your words of wisdom!
Saturday, December 22, 2012
In the interim...
My husband was finally released from physical therapy a few weeks ago for that surgery he had in June down at BAMC. We were both relieved - that was pretty tiring when we weren't used to having to be somewhere three and four times per week. Retirement really makes you... like being home. ;)
We've moved the majority of his care out of the VA for various reasons. Mostly the time it takes to get care or the lack of care. It's been a God send! Things that we had been fighting for the last year and a half to be looked at with the VA have been looked at in less than a month in the private practice world. While all of the news hasn't been wonderful per se, at least we may finally have answers and that IS a good thing.
Yesterday we went to the hospital where my husband had 15 tubes of blood drawn and then had a CT with contrast of his neck and brain done. His endocrinologist suspects a pituitary tumor. There are many types of pituitary tumors and they are almost always benign. This is a good thing. They can grow big enough to press on the optic nerves and cause loss of peripheral vision or all vision. For a man like my husband who has one eye this is a bad thing. His doctor is not the "lets see if it grows or not" kind of guy due to my husband having one eye so this is a good thing. If my husband does have a tumor it *may* explain some things that no other doctor or test has been able to explain. This is a good thing. This leaves us feeling conflicted - do we hope there is a tumor and that removing it fixes these mystery issues or does that make us crazy terrible people? We hope to have results next week but with the holidays I may be asking too much.
You are probably wondering how he ended up in this position. My husband has a TBI and that can cause hormonal imbalances. For my husband it has caused extremely low testosterone and extremely high prolactin. Prolactin is a female hormone and it is the thing driving this possible tumor. (He has other imbalances along with a vitamin D deficiency - all TBI related. It is definitely something to research. If you are familiar with Torrey Shannon, she is a wealth of information as well. If not for her I would have never known to request the tests that led us here.)
These tumor are treatable. My husband would have his removed. Depending on size, either through the nose and sinus or via craniotomy. According to Mayo radiation almost always follows surgery even though these tumors are almost never cancerous. Not all people have the tumors surgically removed first. There are other treatment options available but because of the risk of losing vision in his only eye my husband's doctor would take the most aggressive route if the CT is positive.
We are not telling our family yet until we have a definitive answer. No need to worry them over the holidays. And, as strange as it sounds, neither of us is worried. We see it as either answer is a good answer. Negative is a good answer, positive means that at least one if not more medical conditions will be corrected by the removal of the tumor. It feels incredibly odd to be calm about something like this but I am glad that we are. The holidays can be stressful enough without worrying about the unknown.
I hope that you all have a Merry Christmas (Happy Hanukkah, Happy Kwanzaa, etc.) and a joyous New Year!!!
Please leave me your words of wisdom!
We've moved the majority of his care out of the VA for various reasons. Mostly the time it takes to get care or the lack of care. It's been a God send! Things that we had been fighting for the last year and a half to be looked at with the VA have been looked at in less than a month in the private practice world. While all of the news hasn't been wonderful per se, at least we may finally have answers and that IS a good thing.
Yesterday we went to the hospital where my husband had 15 tubes of blood drawn and then had a CT with contrast of his neck and brain done. His endocrinologist suspects a pituitary tumor. There are many types of pituitary tumors and they are almost always benign. This is a good thing. They can grow big enough to press on the optic nerves and cause loss of peripheral vision or all vision. For a man like my husband who has one eye this is a bad thing. His doctor is not the "lets see if it grows or not" kind of guy due to my husband having one eye so this is a good thing. If my husband does have a tumor it *may* explain some things that no other doctor or test has been able to explain. This is a good thing. This leaves us feeling conflicted - do we hope there is a tumor and that removing it fixes these mystery issues or does that make us crazy terrible people? We hope to have results next week but with the holidays I may be asking too much.
You are probably wondering how he ended up in this position. My husband has a TBI and that can cause hormonal imbalances. For my husband it has caused extremely low testosterone and extremely high prolactin. Prolactin is a female hormone and it is the thing driving this possible tumor. (He has other imbalances along with a vitamin D deficiency - all TBI related. It is definitely something to research. If you are familiar with Torrey Shannon, she is a wealth of information as well. If not for her I would have never known to request the tests that led us here.)
These tumor are treatable. My husband would have his removed. Depending on size, either through the nose and sinus or via craniotomy. According to Mayo radiation almost always follows surgery even though these tumors are almost never cancerous. Not all people have the tumors surgically removed first. There are other treatment options available but because of the risk of losing vision in his only eye my husband's doctor would take the most aggressive route if the CT is positive.
We are not telling our family yet until we have a definitive answer. No need to worry them over the holidays. And, as strange as it sounds, neither of us is worried. We see it as either answer is a good answer. Negative is a good answer, positive means that at least one if not more medical conditions will be corrected by the removal of the tumor. It feels incredibly odd to be calm about something like this but I am glad that we are. The holidays can be stressful enough without worrying about the unknown.
I hope that you all have a Merry Christmas (Happy Hanukkah, Happy Kwanzaa, etc.) and a joyous New Year!!!
Please leave me your words of wisdom!
Saturday, October 27, 2012
After the hiatus...
I took a hiatus.
I hadn't liked the way my posts were going. I had been so angry because the PTSD was engulfing every nook and cranny of our lives. So, I just stopped writing.
I confronted the PTSD demon head on in April and basically told my husband that he had to get some help or I could not stay in the home until he did. I even bluffed - I called a divorce attorney in front of him even though I never had any plan to divorce him. I needed him to know that the PTSD was destroying us. It worked.
We have spent the last six months repairing our frail relationship. My husband has been going to group therapy once a week every week and his psychiatrist finally found a medication that helps my husband with some of the more severe anxiety/depression issues he has. We've apologized for our own parts in the ugliness of the time we simply refer to as Hell. And we have found a new appreciation for all that the other has to deal with every day.
My husband also had another surgery on his leg salvage. A last ditch effort to save it from amputation. The jury is still out on if it was a success and he and his Doc are reserving judgement until his surgery to repair his broken back.
It's been a good six months. If someone would have told me I would be getting to know my husband this far in to our relationship I would have laughed. But I am. And I am loving it!
Please leave me your words of wisdom!
I hadn't liked the way my posts were going. I had been so angry because the PTSD was engulfing every nook and cranny of our lives. So, I just stopped writing.
I confronted the PTSD demon head on in April and basically told my husband that he had to get some help or I could not stay in the home until he did. I even bluffed - I called a divorce attorney in front of him even though I never had any plan to divorce him. I needed him to know that the PTSD was destroying us. It worked.
We have spent the last six months repairing our frail relationship. My husband has been going to group therapy once a week every week and his psychiatrist finally found a medication that helps my husband with some of the more severe anxiety/depression issues he has. We've apologized for our own parts in the ugliness of the time we simply refer to as Hell. And we have found a new appreciation for all that the other has to deal with every day.
My husband also had another surgery on his leg salvage. A last ditch effort to save it from amputation. The jury is still out on if it was a success and he and his Doc are reserving judgement until his surgery to repair his broken back.
It's been a good six months. If someone would have told me I would be getting to know my husband this far in to our relationship I would have laughed. But I am. And I am loving it!
Please leave me your words of wisdom!
Saturday, February 4, 2012
A quote to go along with my last post...
"Happiness is a butterfly, which, when pursued, is always just beyond your grasp, but which, if you sit down quietly, may alight upon you."
– Nathaniel Hawthorne
Butterfly picture via...
– Nathaniel Hawthorne
Friday, February 3, 2012
Humiliated... Thank you hubby.
Earlier tonight I was watching an episode of "Say Yes to the Dress". The bride was plus sized and her entourage was brutal with their comments regarding how she looked in her gown selections. They reduced her to tears as she left the runway. I felt terrible for her. The gown she looked so lovely in they were the most awful about. And I knew how she felt as she was publicly humiliated. My husband did it to me yesterday.
I am very chatty, always have been. I am even more so now, since I rarely get out of the house except to the VA and my husband has drawn so far into himself that he rarely will hold a conversation with me. So, I was thanking the girl at the college for assisting me in correcting my son's home of record to in district. In thanking her we began talking as she walked me out. Unbeknownst to me, my husband was mocking me behind my back. All three of the ladies in the office burst into laughter as he mouthed, "talk, talk, talk" with hand motions. Sadly, I turned in time to witness it. I thanked the girl, said goodbye and as I turned to walk out of the admissions office I began to cry.
I walked as quickly as I could to our vehicle, easily leaving my husband behind as he attempted to catch up. He admitted he does that all of the time behind my back and I was crushed. My father did this to me daily when I was growing up - he still does it to this day and I am 44 years old. It's humiliating and something my husband hates about my father. Yet, my own husband did the same thing.
When the girl on the show began to cry I turned to my husband and said, "That is exactly how you made me feel yesterday.". He didn't comment. I didn't look at him as I spoke so I don't know if he reacted at all.
I don't know how to come to terms with how I feel about him mocking me publicly. I've always been delicate where self esteem and body/personality image comes in to play. It makes me wonder what else he is mocking me about. I have gained considerable weight in the last 4 years of being at home and caring for him. I am in my mid forties and starting to look old. And I have never really liked myself all that much.
On top of that, my son moved out yesterday. He just can't handle the PTSD roller coaster any more. He is also fed up with the constant fighting that comes when the PTSD demon is in the house. I am always the preferred target but if I am not around my son was his next target. I am sad. I know it is going to be hard for him living elsewhere. He was using my vehicle because his needs a new clutch. He needs almost 4k in tools for his Associates degree classes. He needs gas money. he has no job and is in school full time.
We're meeting for lunch on Friday so that we can talk about how I can continue to help him so that he can stay in school. I never thought my son would have to move out in order to have some peace although I totally know how he feels. I am sad that he is gone. He is a pain in the ass and he doesn't follow our rules and he is a slob. But he is my only child and I feel like I let him down. Failed him. And it just adds to my self hatred.
I wish I could find a therapist that gets the whole "my husband has PTSD and it is running our lives but I am NOT looking to leave him" thing. I have struck out twice. I already take depression and anxiety meds so maybe I need to get those reevaluated... Or maybe my husband could attempt to get some help. he refuses to talk to his therapist about his war trauma. He blames everybody but himself for his life and his actions. He takes no responsibility for his actions and is unapologetic. He is unable to take psych meds - they make him suicidal. I feel like I am fighting a losing battle, and I am exhausted from it.
I am very chatty, always have been. I am even more so now, since I rarely get out of the house except to the VA and my husband has drawn so far into himself that he rarely will hold a conversation with me. So, I was thanking the girl at the college for assisting me in correcting my son's home of record to in district. In thanking her we began talking as she walked me out. Unbeknownst to me, my husband was mocking me behind my back. All three of the ladies in the office burst into laughter as he mouthed, "talk, talk, talk" with hand motions. Sadly, I turned in time to witness it. I thanked the girl, said goodbye and as I turned to walk out of the admissions office I began to cry.
I walked as quickly as I could to our vehicle, easily leaving my husband behind as he attempted to catch up. He admitted he does that all of the time behind my back and I was crushed. My father did this to me daily when I was growing up - he still does it to this day and I am 44 years old. It's humiliating and something my husband hates about my father. Yet, my own husband did the same thing.
When the girl on the show began to cry I turned to my husband and said, "That is exactly how you made me feel yesterday.". He didn't comment. I didn't look at him as I spoke so I don't know if he reacted at all.
I don't know how to come to terms with how I feel about him mocking me publicly. I've always been delicate where self esteem and body/personality image comes in to play. It makes me wonder what else he is mocking me about. I have gained considerable weight in the last 4 years of being at home and caring for him. I am in my mid forties and starting to look old. And I have never really liked myself all that much.
On top of that, my son moved out yesterday. He just can't handle the PTSD roller coaster any more. He is also fed up with the constant fighting that comes when the PTSD demon is in the house. I am always the preferred target but if I am not around my son was his next target. I am sad. I know it is going to be hard for him living elsewhere. He was using my vehicle because his needs a new clutch. He needs almost 4k in tools for his Associates degree classes. He needs gas money. he has no job and is in school full time.
We're meeting for lunch on Friday so that we can talk about how I can continue to help him so that he can stay in school. I never thought my son would have to move out in order to have some peace although I totally know how he feels. I am sad that he is gone. He is a pain in the ass and he doesn't follow our rules and he is a slob. But he is my only child and I feel like I let him down. Failed him. And it just adds to my self hatred.
I wish I could find a therapist that gets the whole "my husband has PTSD and it is running our lives but I am NOT looking to leave him" thing. I have struck out twice. I already take depression and anxiety meds so maybe I need to get those reevaluated... Or maybe my husband could attempt to get some help. he refuses to talk to his therapist about his war trauma. He blames everybody but himself for his life and his actions. He takes no responsibility for his actions and is unapologetic. He is unable to take psych meds - they make him suicidal. I feel like I am fighting a losing battle, and I am exhausted from it.
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