We have been busy these last couple of weeks. After Marc's last appointment we had another round of incredibly frustrating encounters with the VA in Dallas. He then went to the FW VA and was able to get in to see his primary care doctor (finally!!). His primary care wants him to see and eye doctor and scheduled him with a psychiatrist through the VA for his PTSD. After waiting a week we found out that the doctor forgot to put in the eye doctor consult so Marc had to try and fix that. He won't be able to see the psychiartist till the end of November. So we are in a waiting game.
Marc has up to 18 months of short term and long term disability benefits which will help. He also is in the process to have his VA disability re-opened so that he can possibly get his rating upped, but that process takes 16-18 months. Then there is Social Security which would not start paying any benefits till six months after a person becomes disabled. Our healthcare coverage will end Jan 3rd when his FMLA leave expires. Of course we hope that this is not a permanent condition but should it be so after Marc gets his disability with the VA increased to 100% we are eligible for health insurance through the VA for free or at a very reduced rate. Marc's health care is already covered completely through the VA.
Praise God we were wise and paid down alot of debt before all this or we would be in even worse shape right now. As it stands right now we are able to meet our bills and there will come a point in this process that things will be pretty tight. I am of course looking for a job but that could take time.
The other huge news is that I found out I am pregnant last week. Even though we are excited and happy about having a baby I would be lying to say that I did not spend quite a bit of time in tears and completely overwhelmed this weekend. I believe God will take care of us -- I just wonder why now. I was relieved to find out today that my OBGYN who I love and who knows my previous pregnancy DOES take medicaid. I have an appointment to get Adaline set up with Medicaid so that we will be able to afford to take care of everybody until I am able to get a job. We have most of the major baby stuff still and if it is a girl we will have most of what we need.
We have been overwhelmed with God's love and grace as shown to us by family, friends, and complete strangers. I have complete faith that all is not lost, I will find a job, we will have enough to provide for our needs. Thank you again to everyone for your prayers and support. I really don't know what we would do without ya'll.
Wednesday, November 2, 2011
Thursday, October 20, 2011
What the Neurologists Think
So today was alternately nerve wracking/relieving. Marc was scheduled to have botox injections in his eyelids today which we had been told might help his condition. After watching a disturbing video of the procedure and doing extensive research both of us were really not too confident that the injections would work, but since this was the course of treatment for his current diagnosis we were trying to put on a brave face about it.
Marc was silent on the way to the hospital -- and if you know Marc you know that he likes to talk. The poor guy was dreading what was going to happen and personally I was hoping I didn't turn into a wreck during the procedure. Everyone was praying for us and we could feel the prayers.
This time he was seen by two neurologists, a new one we had never met and the one who had seen us in the emergency room 3 weeks ago. Finally, praise God, they listened carefully and the new neuroligist took copitious notes on everything he said. Marc was able to effectively communicate all of his symptoms to the doctors and they ran a series of tests to see how his muscle function was. After a thorough evaluation of his person and many, many questions this new neurologist told us that she was not going to do the injections because she did not believe they would work.
She ruled out a link between his bells palsy history and the likelyhood that it is connected to his exposure to mortar fire or falling down the stairs. However we were shocked when she said this could be a result of his PTSD. I came home and did some preliminary reseach and apparently they believe that PTSD may alter neurobiological function resulting in a host of health effects. She wants us to pursue treatement through his primary care giver at the VA to see about getting him in for PTSD therapy.
The other cause that it could be (but again they really don't know) is myasthenia gravis, an autoimmune disorder where the body attacks certian neurochemicals related to voluntary muscle function. She ordered a blood test that would tell her if he has this. In the meantime she put him on the medication for that disorder and if it works then we will take it from there. We should know in a few days if he has that condition and if the drug treatment is working.
Both doctors stressed that they hope it is not a neurological disease and we all hope Marc recovers.
Marc was of course relieved that they did not have to inject his eyelid area 16 times with a poisonious substance but is also bummed at the same time that we are back to not knowing what we are dealing with. If it is PTSD and it doesnt go away then he will most likely be classified as 100% disabled. He would not be allowed to work and that throws his asperations at finishing his degree pretty much out the window. If it is myasthenia then the condition is treatable but there is no cure. Of course it could be something else entirely.
I am hoping that by this weekend we will know if the medication prescribed is working. Then we wait for the test results and head back to the doctor probably next tuesday to see about his PTSD stuff. I hope then we will know more and be able to make some decisions about jobs and life in general.
Marc was silent on the way to the hospital -- and if you know Marc you know that he likes to talk. The poor guy was dreading what was going to happen and personally I was hoping I didn't turn into a wreck during the procedure. Everyone was praying for us and we could feel the prayers.
This time he was seen by two neurologists, a new one we had never met and the one who had seen us in the emergency room 3 weeks ago. Finally, praise God, they listened carefully and the new neuroligist took copitious notes on everything he said. Marc was able to effectively communicate all of his symptoms to the doctors and they ran a series of tests to see how his muscle function was. After a thorough evaluation of his person and many, many questions this new neurologist told us that she was not going to do the injections because she did not believe they would work.
She ruled out a link between his bells palsy history and the likelyhood that it is connected to his exposure to mortar fire or falling down the stairs. However we were shocked when she said this could be a result of his PTSD. I came home and did some preliminary reseach and apparently they believe that PTSD may alter neurobiological function resulting in a host of health effects. She wants us to pursue treatement through his primary care giver at the VA to see about getting him in for PTSD therapy.
The other cause that it could be (but again they really don't know) is myasthenia gravis, an autoimmune disorder where the body attacks certian neurochemicals related to voluntary muscle function. She ordered a blood test that would tell her if he has this. In the meantime she put him on the medication for that disorder and if it works then we will take it from there. We should know in a few days if he has that condition and if the drug treatment is working.
Both doctors stressed that they hope it is not a neurological disease and we all hope Marc recovers.
Marc was of course relieved that they did not have to inject his eyelid area 16 times with a poisonious substance but is also bummed at the same time that we are back to not knowing what we are dealing with. If it is PTSD and it doesnt go away then he will most likely be classified as 100% disabled. He would not be allowed to work and that throws his asperations at finishing his degree pretty much out the window. If it is myasthenia then the condition is treatable but there is no cure. Of course it could be something else entirely.
I am hoping that by this weekend we will know if the medication prescribed is working. Then we wait for the test results and head back to the doctor probably next tuesday to see about his PTSD stuff. I hope then we will know more and be able to make some decisions about jobs and life in general.
Thursday, October 6, 2011
Marc's Eye Problems and Update
I know there have been many questions about Marc's condition and we are blessed to have so many friends and family who care. I figured I would give everyone as much info as we have now as well as what happened when.
I believe it was 2 weeks ago that Marc got sick and stayed home a couple days. When he did go in to work on day three he called me on the road saying that he could not open his right eye and there was numbness and paralysis on that side of his face. He was able to make it to work and get to the nurses office before Jim got there to drive him to the ER. After trying to get care at the VA FW outpatient center he went to Hugley ER in burleson and had an MRI, CT scan and bloodwork done before being sent home with a follow up appointment with a neurologist the next day. That neurologist ordered more extensive blood tests and an MRA. All of the tests came back negative for tumors, evidence of stroke or cerebrial aneurysm. So that was good news. However, his eye still would not open.
After a trip the following week to the VA ER due to his condition seeming to worsen in that eye we finally got a diagnosis of blepharospasm. The neurologist there assured us he could drive and prescribed muscle relaxers.
Muscle relaxers only help about 5% of people with this condition and Marc is not one of those 5 %. This past monday Marc was driving to work when his left eye spasmed shut too, rendering him functionally blind. Thank God he did not wreck and was able to safely pull over and call us to come get him. We contacted the VA and the earliest anyone can see him is October 2oth. The next step in treatment is botox injections in his eyelids. These injections need to be done every three months for the rest of his life in order for him to be able to see on a consistant basis. Since it seemed so far away we tried to get an appointment with another specialist outside the VA sooner and the soonest they could see him was Oct 17th. So basically we just have to wait.
So far I have learned that this condition is exsaserbated by light and that we need to find Marc some specially tinted glasses so that we can lessen the chance of spasms when inside looking at a computer or TV and especially when outside. Driving tends to be a huge trigger so we are not sure if he will be able to drive himself even after treatment.
Right now we are just trying to adjust to life. Marc is out on FMLA leave until we can get him treatment an after that we pray he will be able to return to work, even if that means I drive him to and from his job. If not we are looking into his disability benefits and I have started searching for a flexible part time job that would allow me to bring in some income and soften the financial blow.
We are requesting prayer for a speedy recovery and for our financial concerns to be remedied. Also, the emotional toll on all of us has been enormous. Marc is frustrated that he has gone from a fully functioning independent adult to someone who can't even get himself his own clothes or serve his food. My caregiver load has doubled and there really isnt much of a break. Adaline is more emotional since she is unsure what is going on.
Thank you again to all our family and friends who have provided support to us as we face the next challeges ahead.
I believe it was 2 weeks ago that Marc got sick and stayed home a couple days. When he did go in to work on day three he called me on the road saying that he could not open his right eye and there was numbness and paralysis on that side of his face. He was able to make it to work and get to the nurses office before Jim got there to drive him to the ER. After trying to get care at the VA FW outpatient center he went to Hugley ER in burleson and had an MRI, CT scan and bloodwork done before being sent home with a follow up appointment with a neurologist the next day. That neurologist ordered more extensive blood tests and an MRA. All of the tests came back negative for tumors, evidence of stroke or cerebrial aneurysm. So that was good news. However, his eye still would not open.
After a trip the following week to the VA ER due to his condition seeming to worsen in that eye we finally got a diagnosis of blepharospasm. The neurologist there assured us he could drive and prescribed muscle relaxers.
Muscle relaxers only help about 5% of people with this condition and Marc is not one of those 5 %. This past monday Marc was driving to work when his left eye spasmed shut too, rendering him functionally blind. Thank God he did not wreck and was able to safely pull over and call us to come get him. We contacted the VA and the earliest anyone can see him is October 2oth. The next step in treatment is botox injections in his eyelids. These injections need to be done every three months for the rest of his life in order for him to be able to see on a consistant basis. Since it seemed so far away we tried to get an appointment with another specialist outside the VA sooner and the soonest they could see him was Oct 17th. So basically we just have to wait.
So far I have learned that this condition is exsaserbated by light and that we need to find Marc some specially tinted glasses so that we can lessen the chance of spasms when inside looking at a computer or TV and especially when outside. Driving tends to be a huge trigger so we are not sure if he will be able to drive himself even after treatment.
Right now we are just trying to adjust to life. Marc is out on FMLA leave until we can get him treatment an after that we pray he will be able to return to work, even if that means I drive him to and from his job. If not we are looking into his disability benefits and I have started searching for a flexible part time job that would allow me to bring in some income and soften the financial blow.
We are requesting prayer for a speedy recovery and for our financial concerns to be remedied. Also, the emotional toll on all of us has been enormous. Marc is frustrated that he has gone from a fully functioning independent adult to someone who can't even get himself his own clothes or serve his food. My caregiver load has doubled and there really isnt much of a break. Adaline is more emotional since she is unsure what is going on.
Thank you again to all our family and friends who have provided support to us as we face the next challeges ahead.
Wednesday, September 14, 2011
Six month check -up
Whew! Well, desipite the heat this summer just flew by! We have been super busy here on our little acre and a half and I finally have a few minutes at the computer to update folks :)
Adaline has been growing bigger and stronger by the day. She is all into Toy Story and "My Jessie" as she calls her. We still struggle to get her to sleep in her own bed but it is getting better as time goes on in this big new house. She is starting to talk in sentences and ask questions -- even try to sing her favorite songs. I think for halloween she is going to be Jessie -- although for a while it looked like Madeline was a contender as well.
Marc got his Veterans Disability rating in June and we are blessed to now not have to worry about me getting a job for the forseeable future. He is working hard and taking 9 hours of classes at UNT this fall. He has decided he wants to help his fellow vets after college and so is getting a degree specializing in Non-profit management, disability and rehabilitation. I am super proud of him
I have been adjusting to being stay at home mommy -- sometimes it has been really hard (does the cleaning never end???) I struggle at times with feeling unimportant since 2 years olds and husbands don't always say thank you, lol. Although, I have to say this is the healthiest I have felt in years and I am so so happy to be here to see Adaline grow and change. Instead of hearing what cute thing she did that day I actually get to see it. Plus, I have the added peace of knowing this is where God wants me to be at this point in my life.
We finally found a church we like -- Reece Prairie Baptist Church, and I am joining a MOPS group to meet area moms. In the spring I hope to get Adaline in gymnastics or dance -- something outside the house.
Considering we have been in the house 6 months it is amazing what we have accomplished (with some much appreciated help from family and friends at times) Here is a rundown on what we have accomplished:
Adaline's room and Den have been 100% painted
Wood flooring laid in the den -- it looks so nice!!!
The freezer is cleaned and ready for my first marathon cooking day this Saturday
The oil field pipe has been cut, the holes dug and the posts set for the perimeter of the yard and dog run.
Our guest room is decorated and ready for guests
We got new furniture for the front living area
Both the front and back porches have been painted, stained and re-done to be safer and prettier.
The back 3/4 acre has been mowed and the area under our patch of trees cleared out for some shade
Jim got his bus here -- despite several near death experiences and a dead deer along the way.
Most everything is unpacked -- it is just not all organized yet.
We have a new water heater and a/c unit.
The pantry now has shelving!!! I can find our food :)
All the toys have been organized in bins and placed in their homes for the forseeable future.
Since this summer was the hottest one on record (ugh) we did not get as much done outside as we wanted and are actually glad we did nothing to landscape this year. I have plans for crepe myrtles and daffodiles next year along with a veggie garden and hopefully some trees.
Once there is some rain my dad, Jim and Marc -- possibly Uncle Albert too -- are going to get the fence welded. We just cant risk the wildfire danger right now -- we have already been evacuated once.
Currently the big projects up next are the roof, back porch cover, carport and busport. Hopefully soon we will have those completed. We are putting a nice white metal roof on which will hopefully last us a good long while.
After those projects are done then I think our thoughts will turn to getting my 1954 antique stove working along with fixing the wall in the kitchen where the cabinets were erroneously torn out.
My personal projects include spray painting some lamps, closet organization and a fall purge of clothes to good will -- along with getting my kitchen organized completely.
I want to get a new dining table to seat 8 and Adaline needs a twin sized bed and matress, but apart from that we have all the furniture we need.
So as you can see -- we have been busy! We even managed to fit family and friends in desipite my home being kind of a crazy place this summer. Marc and I want our home to be a comfortable place for others to come hang out and relax and I hope we continue to be a welcoming place to all.
Marc got his Veterans Disability rating in June and we are blessed to now not have to worry about me getting a job for the forseeable future. He is working hard and taking 9 hours of classes at UNT this fall. He has decided he wants to help his fellow vets after college and so is getting a degree specializing in Non-profit management, disability and rehabilitation. I am super proud of him
I have been adjusting to being stay at home mommy -- sometimes it has been really hard (does the cleaning never end???) I struggle at times with feeling unimportant since 2 years olds and husbands don't always say thank you, lol. Although, I have to say this is the healthiest I have felt in years and I am so so happy to be here to see Adaline grow and change. Instead of hearing what cute thing she did that day I actually get to see it. Plus, I have the added peace of knowing this is where God wants me to be at this point in my life.
We finally found a church we like -- Reece Prairie Baptist Church, and I am joining a MOPS group to meet area moms. In the spring I hope to get Adaline in gymnastics or dance -- something outside the house.
Considering we have been in the house 6 months it is amazing what we have accomplished (with some much appreciated help from family and friends at times) Here is a rundown on what we have accomplished:
Adaline's room and Den have been 100% painted
Wood flooring laid in the den -- it looks so nice!!!
The freezer is cleaned and ready for my first marathon cooking day this Saturday
The oil field pipe has been cut, the holes dug and the posts set for the perimeter of the yard and dog run.
Our guest room is decorated and ready for guests
We got new furniture for the front living area
Both the front and back porches have been painted, stained and re-done to be safer and prettier.
The back 3/4 acre has been mowed and the area under our patch of trees cleared out for some shade
Jim got his bus here -- despite several near death experiences and a dead deer along the way.
Most everything is unpacked -- it is just not all organized yet.
We have a new water heater and a/c unit.
The pantry now has shelving!!! I can find our food :)
All the toys have been organized in bins and placed in their homes for the forseeable future.
Since this summer was the hottest one on record (ugh) we did not get as much done outside as we wanted and are actually glad we did nothing to landscape this year. I have plans for crepe myrtles and daffodiles next year along with a veggie garden and hopefully some trees.
Once there is some rain my dad, Jim and Marc -- possibly Uncle Albert too -- are going to get the fence welded. We just cant risk the wildfire danger right now -- we have already been evacuated once.
Currently the big projects up next are the roof, back porch cover, carport and busport. Hopefully soon we will have those completed. We are putting a nice white metal roof on which will hopefully last us a good long while.
After those projects are done then I think our thoughts will turn to getting my 1954 antique stove working along with fixing the wall in the kitchen where the cabinets were erroneously torn out.
My personal projects include spray painting some lamps, closet organization and a fall purge of clothes to good will -- along with getting my kitchen organized completely.
I want to get a new dining table to seat 8 and Adaline needs a twin sized bed and matress, but apart from that we have all the furniture we need.
So as you can see -- we have been busy! We even managed to fit family and friends in desipite my home being kind of a crazy place this summer. Marc and I want our home to be a comfortable place for others to come hang out and relax and I hope we continue to be a welcoming place to all.
Monday, April 18, 2011
Bittersweet Day
I gave my notice today at the library. I am happy and sad at the same time. Sad because I will miss my friends and libraries in general. Happy because I know I am doing the right thing staying home with Adaline. There are so many things I want to do and accomplish in life and being a great mommy is at the top of my list. So with lots of prayer and a heaping dose of faith I am leaping off into the unknown . . .
Sunday, April 17, 2011
Adaline -- Country Girl
Everytime we are out at the house fixing something Adaline has to be outside playing as much as possible. She loves the space so much!
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