Thursday, March 31, 2011
Update
A lot has happened here..since I haven't posted it's hard to refresh my memory. Here is the latest. Pete had some cancellings at Vanderbilt 100 Oaks Mall due to a number of Dr leaving the office. We are not sure why. However, he went in today for his treatment, and we didn't get it. He got two new Dr's and they have a new treatment plan for him. The DR seems to believe that the treatments are not effective. Basically, what they are learning is the latest "effective" treatment is clonadine treatment. This is new news to us. So, because of this change in planning, Pete is expected to do two months of physical therapy, and to check himself into detox of the pain medications,for a week at a psychiatric hospital, and start clonadine immediately, which he will surely need. That's quite a large pill to swallow. He's having some adjustments to this, I mean basically asking him to come off all drugs, and have noting for pain, but to start clonadine, we hve no idea what clinadie does or how it works. Very scary if you ask me, and Pete too. So, I'll be back with update as to what is coming next and his progress this year.
Thursday, March 12, 2009
Frustration
The RSD syptoms have continue to spread throughout Peters body. He has difficulty walking. Especially outside of the house. The only place we actually go now is to Kroger. We went out to eat last night, and he had difficulty completing dinner because he had a pain attack whicle we were eating. I ordered him a double shot of Vodka to help him relax. It's very embarassing for him, and he's handling it so well. I have to get out of bed in the morning, when Kyle leaves for school, because Peter's sleep is so restless, it keeps me awake. I have to help him in the shower, and yesterday it was bad, with I have to life his legs out over the edge of the tub. I'm sure they would't change the tub layout, but it sure would help. Peter still doesn'thave insurance, but yeaterday the Lawyer gave us some pgone numbers to call. Disability hasn't responded yet. I don't know what they are waiting for? This is seriously neglect. If he was a child, they would have the state take care of him. I can't believe that our government neglects people like my husband who need help. Our lives are only going to progressivly get more difficult. The main problem that continues is the inability to ge medication. Peter only has just a little bit of two medications, one for sleep and one for pain. They are not effective, and make him quite disoriented.
We were able to make an appointment finally, with a DR in Nashville, that agreed to see him. They will take a sliding fee based on our income. The stimulator representative will meet us there. This way they can reprogram the unit to reach other parts of his body that he needs releif. They also discussed putting another unit, and a morphine unit in his back. I really don't know what will happen, but discussing the avalialible options is the first thing.
What he really needs is a miracle. I realize that our government doesn't make these, so the best thing they could do is provide us with financial assistance to help get through this. I am making it along pretty weel, being a spouse responsible for five people on one income. Peter is just able to function in the 1000 sf. living space of our apartment. These daily living things that he can do around the house, are the most of what he can do. No one understands. Not unless you have walked in his shoes will you understand. The best way for someone to help, is to help make his, and our familys life just alittle more comfortable. Pain releif starts with better accessable health care, and madication. This is something that is essential. I can't believe that our country has overlooked such an important part of our lives. We are being neglected, and so are so many Americans. It's inhumane treatment.
We were able to make an appointment finally, with a DR in Nashville, that agreed to see him. They will take a sliding fee based on our income. The stimulator representative will meet us there. This way they can reprogram the unit to reach other parts of his body that he needs releif. They also discussed putting another unit, and a morphine unit in his back. I really don't know what will happen, but discussing the avalialible options is the first thing.
What he really needs is a miracle. I realize that our government doesn't make these, so the best thing they could do is provide us with financial assistance to help get through this. I am making it along pretty weel, being a spouse responsible for five people on one income. Peter is just able to function in the 1000 sf. living space of our apartment. These daily living things that he can do around the house, are the most of what he can do. No one understands. Not unless you have walked in his shoes will you understand. The best way for someone to help, is to help make his, and our familys life just alittle more comfortable. Pain releif starts with better accessable health care, and madication. This is something that is essential. I can't believe that our country has overlooked such an important part of our lives. We are being neglected, and so are so many Americans. It's inhumane treatment.
Wednesday, December 3, 2008
TennCare Sucks
Today we learned that TennCare dropped Peter's coverage. The Human Service case worked stated that our income is too high. The cutoff income is $980 per month. That's less then $400 each two weeks. How the hell can someone afford Health Coverage that doesn't work. They expect the spouse to include him on their plan. I work and can barely pay bills, and receive food stamps for assistance. All my children are being dropped from TennCare this month. I couldn't include them on my plan if I wanted to. The group sign up in n June, and it would cost me over $700 a month for coverage for the family through Aetna.
The DR office we called to inform them that he no longer has insurance coverage. They are trying to see what can be done to keep him there. Peter also has someone looking for a plan that takes pre existing disability, and maybe there is a plan that we could pick up. That's at least a $100 a month, that we don't have.
We also just found out that the Dr.Lasdon that he saw in Smyrna for pain management, was asked to resign from Metro General due to unethical practices. This information came from the ANS representative that put the unit in Peter's back. he said that they get send backs, units that have been removed from peoples bodies and replaced with units from other companies. The DR told us that he thought Peter's unit wasn't working properly. How would he know this within a 10 minute office visit, which Peter has no complaints about the ANS unit. Perhaps, money. The DR is getting information from another company selling their product, and each time a person gets a new unit the DR must get some compensation.
Meanwhile, we still don't have a cue how we are going to get insurance. His medication will run out in about a week. He stopped taking the Trazadone, which was working just fine in pain management, but inhibited his sexual functioning. So he refuses to take it, and the pain has returned to the previous intensity before Trazodone. We will pray tonight, that the DR office will agree to continue seeing him so he can get medication. if not, then maybe we can find a coverage that we can scrape together. The last resort is moving to a state that has Health coverage. The other problem is the faulty American Health Care system. There is no hope for people with chronic pain. We have fallen through the middle of the system. The government doesn't have a plan to care for us. Our Country has failed us once again.
The DR office we called to inform them that he no longer has insurance coverage. They are trying to see what can be done to keep him there. Peter also has someone looking for a plan that takes pre existing disability, and maybe there is a plan that we could pick up. That's at least a $100 a month, that we don't have.
We also just found out that the Dr.Lasdon that he saw in Smyrna for pain management, was asked to resign from Metro General due to unethical practices. This information came from the ANS representative that put the unit in Peter's back. he said that they get send backs, units that have been removed from peoples bodies and replaced with units from other companies. The DR told us that he thought Peter's unit wasn't working properly. How would he know this within a 10 minute office visit, which Peter has no complaints about the ANS unit. Perhaps, money. The DR is getting information from another company selling their product, and each time a person gets a new unit the DR must get some compensation.
Meanwhile, we still don't have a cue how we are going to get insurance. His medication will run out in about a week. He stopped taking the Trazadone, which was working just fine in pain management, but inhibited his sexual functioning. So he refuses to take it, and the pain has returned to the previous intensity before Trazodone. We will pray tonight, that the DR office will agree to continue seeing him so he can get medication. if not, then maybe we can find a coverage that we can scrape together. The last resort is moving to a state that has Health coverage. The other problem is the faulty American Health Care system. There is no hope for people with chronic pain. We have fallen through the middle of the system. The government doesn't have a plan to care for us. Our Country has failed us once again.
Thursday, November 27, 2008
Introduction
I am the spouse of a Chronic Pain patient. My husband has had Reflex Sympathetic Dystrophy since December 2005. It started as an infection in his foot. This infection was treated and then the pain would not end. This was the beginning of our chronic nightmare. The nightmare continues with poor health care here in Tennessee for those who are not able to work due to this disease. Delay in the initial diagnosis by the PCP was the first problem. The doctor was not familiar with the symptoms of RSD, and minimized our complaints. We recognized the problem was with the doctor when he would not make a referral to someone that might know what was going on. We faked that we had insurance to get into an office that would see him. We really didn't know what was wrong, we thought maybe it was something wrong with the bones, and saw a bone doctor. This doctor knew right away that it wasn't a bone problem, and made a referral to a foot nerve doctor. After several treatments of ankle blocks, he made the diagnosis of Reflex Sympathetic Dystrophy approximately March of 2006.
This was also the time that his performance with work deteriorated. He loss all jobs that he had. His employer, a well known automobile dealer here in Murfreesboro TN, also the owner is the head of the largest non-profit agency in the country, fired him. They had zero tolerance to accommodate him so he could take a day off to get medical treatments. This employer also said he was faking it, to get time off. Of course here in Tennessee, you can fire someone for any reason.
No work for a man isn't a good thing. That's just one problem. No one outside of our immediate family can fathom what we deal with on a minute to minute basis. I'm so thankful to know that there are people out there who actually understand what we go through. So what? When our government doesn't want to recognize it! What about the support that we need to get through this ? I'm talking about financial support. As the only working parent of three children, I need some assistance. I feel like I am a single parent of four, one husband and three children. I'm doing it! and I'm going to college full time, so it's possible to continue life when your spouse has a disability. The most challenging problem that we face is disability BS as I call it. I actually have faith, because this isn't going away, and persistence always pays off. I know that we will win in the end. I do realize that the government doesn't realize that even once we get some financial assistance, our daily nightmare doesn't end.
For example, having a husband that is chronically doped up, or complaining of something hurting at various times in the day. It takes much longer to complete simple daily living task, such as dressing, and showering, moving,walking,and not driving. I have to drive everywhere. I never get a break.
I'm going to try to focus on how this disability affects the well spouse. I am not going to write about RSD, that can be found on a RSD website. I am not going to write about my husband because really that is his business, and if he wants to blog he can. I really want this to be my space to document how I feel dealing with another illness. This disability has shattered my thought on what life looked should look like. I now have to accept what is, and learn to live my life around the disability.
I had anger, lots of it. Sometimes it surfaces again, and I never know when it will come up. I try to keep myself as busy as possible moving forward with my life, because the disability of my spouse feels like a lead weight around my ankles. I have learned to move with this weight in my life pretty well, none the less it is still there. It has imprisoned us.
I have sadness, because it is sometimes difficult to see another pain, and selfish because I can only feel how it affects me, when I should really learn to be more supportive for my spouse when he needs me. This is very challenging for me, to be emotionally supportive when I feel that I'm being economically supportive, I withhold the emotional part out of needing something left for myself. Sadness because I feel that others do not understand, and for the dreams that he had for himself that will never come. Wanting more always, and learning to accept what we have.
I am thankful for my life and our blessings. This I can say despite all this that we endure, I am still blessed. Today was a good day, and we made it through.
This was also the time that his performance with work deteriorated. He loss all jobs that he had. His employer, a well known automobile dealer here in Murfreesboro TN, also the owner is the head of the largest non-profit agency in the country, fired him. They had zero tolerance to accommodate him so he could take a day off to get medical treatments. This employer also said he was faking it, to get time off. Of course here in Tennessee, you can fire someone for any reason.
No work for a man isn't a good thing. That's just one problem. No one outside of our immediate family can fathom what we deal with on a minute to minute basis. I'm so thankful to know that there are people out there who actually understand what we go through. So what? When our government doesn't want to recognize it! What about the support that we need to get through this ? I'm talking about financial support. As the only working parent of three children, I need some assistance. I feel like I am a single parent of four, one husband and three children. I'm doing it! and I'm going to college full time, so it's possible to continue life when your spouse has a disability. The most challenging problem that we face is disability BS as I call it. I actually have faith, because this isn't going away, and persistence always pays off. I know that we will win in the end. I do realize that the government doesn't realize that even once we get some financial assistance, our daily nightmare doesn't end.
For example, having a husband that is chronically doped up, or complaining of something hurting at various times in the day. It takes much longer to complete simple daily living task, such as dressing, and showering, moving,walking,and not driving. I have to drive everywhere. I never get a break.
I'm going to try to focus on how this disability affects the well spouse. I am not going to write about RSD, that can be found on a RSD website. I am not going to write about my husband because really that is his business, and if he wants to blog he can. I really want this to be my space to document how I feel dealing with another illness. This disability has shattered my thought on what life looked should look like. I now have to accept what is, and learn to live my life around the disability.
I had anger, lots of it. Sometimes it surfaces again, and I never know when it will come up. I try to keep myself as busy as possible moving forward with my life, because the disability of my spouse feels like a lead weight around my ankles. I have learned to move with this weight in my life pretty well, none the less it is still there. It has imprisoned us.
I have sadness, because it is sometimes difficult to see another pain, and selfish because I can only feel how it affects me, when I should really learn to be more supportive for my spouse when he needs me. This is very challenging for me, to be emotionally supportive when I feel that I'm being economically supportive, I withhold the emotional part out of needing something left for myself. Sadness because I feel that others do not understand, and for the dreams that he had for himself that will never come. Wanting more always, and learning to accept what we have.
I am thankful for my life and our blessings. This I can say despite all this that we endure, I am still blessed. Today was a good day, and we made it through.
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