Tuesday, November 3, 2015
Saturday, April 19, 2014
HIV Pain Keeping Me Up at Night (@IDIClinic)
We'll it's just now 6AM on Saturday morning and I've been awake for hours. Fortunately, I got a little bit of sleep late yesterday evening. Today, the pain in my feet and legs are kind of getting to me. I think what adds to the frustration of it all is that I live in the backward state of Oklahoma and empathy and solutions are not a strong attribute for HIV doctors in our state.
I can easily do a Google search about HIV related pain and find that from the various studies about HIV and Pain that about 40% to 80% of HIV clients with pain do not even get the benefit of being diagnosed with HIV related pain or HIV related neuropathy. And of all the years having HIV (15+ years) I have yet to have an HIV doctor do much about talking or dealing with HIV related pain. The most I've had them do is prescribe gabapentin, which for me is a vomit fest waiting to happen, or the updated version of gabapentin which is Lyrica. Lyrica for me even at a low dose causes persistent eye pressure and I have to stop talking it after a few days so that I can see better and not have eye pain. I've recently found out that the study on lyrica that was being done for diabetics and people with HIV was going so bad that they just stopped the study and it said that the positive effects of lyrica were just as effective as a placebo - I'd been telling them for years that it was not very effective and I get a dumb glazed look back from the doctor and the reassurance that it helps a lot of people. Obviously not! Says the study. So, Lyrica fails to help.
On top of all that, my primary doctor is closing there doors this month and they are the ones that have been helping me with HIV pain management. It has taken years to find medication that helps without causing to many side effects. So, I have to take the medical information they gave me and try to locate another doctor or be without help. Which is really where it seems the red tape would rather have me.
There is really not desire for doctors in the HIV world to refer a client to HIV specialized pain management or make much acknowledgement that there is even a need in this area. I was talking with an old friend that has HIV and mentioned my issues with HIV neuropathic pain in my hands, legs and feet. And my friend responded that he has had issues with that kind of pain for years and not once has his doctor ever addressed any aspect of pain related to HIV. And hey, if you don't take ownership of the issue then you have less work to do or as a doctor you can have the satisfaction of feeling as though it is someone else's issue.
Yes. I know there are places out there in America that have there shit together, but, Oklahoma is not one of those places. Yet.
- Ryan
Also see: Dealing with Pain and Stress on the Queer as Faith Blog
I can easily do a Google search about HIV related pain and find that from the various studies about HIV and Pain that about 40% to 80% of HIV clients with pain do not even get the benefit of being diagnosed with HIV related pain or HIV related neuropathy. And of all the years having HIV (15+ years) I have yet to have an HIV doctor do much about talking or dealing with HIV related pain. The most I've had them do is prescribe gabapentin, which for me is a vomit fest waiting to happen, or the updated version of gabapentin which is Lyrica. Lyrica for me even at a low dose causes persistent eye pressure and I have to stop talking it after a few days so that I can see better and not have eye pain. I've recently found out that the study on lyrica that was being done for diabetics and people with HIV was going so bad that they just stopped the study and it said that the positive effects of lyrica were just as effective as a placebo - I'd been telling them for years that it was not very effective and I get a dumb glazed look back from the doctor and the reassurance that it helps a lot of people. Obviously not! Says the study. So, Lyrica fails to help.
On top of all that, my primary doctor is closing there doors this month and they are the ones that have been helping me with HIV pain management. It has taken years to find medication that helps without causing to many side effects. So, I have to take the medical information they gave me and try to locate another doctor or be without help. Which is really where it seems the red tape would rather have me.
There is really not desire for doctors in the HIV world to refer a client to HIV specialized pain management or make much acknowledgement that there is even a need in this area. I was talking with an old friend that has HIV and mentioned my issues with HIV neuropathic pain in my hands, legs and feet. And my friend responded that he has had issues with that kind of pain for years and not once has his doctor ever addressed any aspect of pain related to HIV. And hey, if you don't take ownership of the issue then you have less work to do or as a doctor you can have the satisfaction of feeling as though it is someone else's issue.
Yes. I know there are places out there in America that have there shit together, but, Oklahoma is not one of those places. Yet.
- Ryan
Also see: Dealing with Pain and Stress on the Queer as Faith Blog
Tuesday, March 25, 2014
Quality of Medical Care for HIV Clients (OU Medical IDI Clinic Edition)
Poor quality of care is not a new thing in the healthcare world. My experience over the last 15 years or so with dealing with my HIV doctors has mostly been with OU Medical's IDI Clinic. I am on a fixed income and they are the provider in my area that currently has the funding from Ryan White grants that are provided for those living on a disability income or at poverty level wages. I've had good experiences with OU's IDI Clinic in the past, but as a trend, I can see that things have been getting worse for clients.
For a little background for those who don't know me: I help run an online community of those who are disabled; our number group members is about 2,000. So, I'm not a stranger to hearing about medical issues that arise with healthcare providers. Along with being a good support group for each other, I am in a unique position to hear about a variety of negative issues in healthcare that happen to people aside from myself.
Recently, I had a more than negative experience that I'm finding all too common with how doctors conduct themselves. With my recent experience, I thoughts that I would start writing about them. I am hoping that those that find themselves having issues with HIV doctors or other doctors will find some comfort in knowing that they are not alone and to help in some way let the medical community identify quality care; how to recognize issues within an organization and to set it on a path towards success as defined by client satisfaction and less about arbitrary standards set by their medical environments.
When you have HIV there are a host of related issues that can happen that need to be addressed by your doctor. HIV drugs are highly aggressive as well as HIV itself. If you have listened closely to the end of any commercial about any medication side effects are to be expected. My last couple of doctors seem to very dismissive about medication side effects; as though they are unimportant or because they do not hear much about them that they are not much of an issue. What I think is actually happening is that it is so normal for a person with HIV to have nausea, diarrhea, lack of appetite or vomiting, that it does not get talked about because it is so ongoing that the doctor should already know.
They are already perscribing medications for those things, so, it is not a topic that needs to often be brought up. However, when you or I do bring up having issues with side effects for what they already treat me for, it is as though they are dumbfounded or do not think it is important enough to try new ways of helping control those side effects. There are at a minimum a dozen different medications that can be tried if one stops being effective.
I've seen a list of medications for side effects and without naming them, I know there are medications that my last two doctors are fearful of prescribing that are highly effective at helping with many number of side effects. I've had a conversation about one medication that will help relieve HIV related neuropathy, decrease nausea & vomiting as well as insure a good appetite. It's a single pill that would replace about 6 of my current pills and has a great success rate with little to no side effects or side effects that diminish very quickly, side effects that are not negative in nature. OU's IDI clinic has it on the formulary of medications and when talking about this medication one doctor said they would never prescribe it.
The empathy to care and follow through with the oath to help those under their care has been tainted by political bias and internal moral judgments as patients quality of care is arrogantly being shat upon - and with anger in the doctors voice when bringing up the topic of the medication as an option to help me as well as reduce my intake of medications might be able to remove from my daily routine.
Because of casual office interactions from doctor to doctor, I believe this fear, moral and political bias has become common place for all the doctors at OU Medical's IDI clinic.
And now, all of the sudden I get a call from some doctors assistant or nurse, telling me that medications X, Y & Z they do not want to prescribe because they are (poof) no longer HIV related and they are trying to reduce their volume of refills that OU Pharmacy sends them and could you get your family doctor to start to prescribe please... so we do not have to do it. Also known as, we do not want to do our job anymore.
After getting the call, about not getting my HIV related medications, I called OU's IDI Clinic and asked to speak to their PR department or a manager or supervisor. I later got a called from a gentleman that I heard some of the same buzzwords; Lowering Prescription Refills and needling to free up time for those working: also known as "They have a job to do, but we have found a way to keep them from doing their job and we call it a "process or procedural changes"". My husband and I both express that our medications are clearly HIV related; it is the reason we go there. Also, that we expect them to do their job and if they have a work overload, then that is the definition of needing to hire more people to meet that demand. Sadly, some of the medications they are getting tired of refilling they would send to the OU Pharmacy with no refills on a medication that would normally get from 5 to 8 refills on a standard prescription. Well, no wonder they have more work to do. They clicked the wrong button the last time they filled it.
After that we received a call from the next escalation of the call and what do you know. We stop hearing the buzz words and was painted a pretty picture about how I was put in the wrong pile for callbacks which patiences where going to not get their refills and those who were going to get their refills. What this picture really means is that there are a stack of OU IDI Clinic's clients that they are tired of having as clients and those phone calls are going out and they are sending the message that will be typed into internet searches, "OU IDI Clinic will not fill my medications anymore. Why?" Well, if you are one of those people you have found the right page and you are not alone with this issue.
Just to sum it up. OU's IDI Clinic needs to get back to doing their job; the job of understanding clients needs, empathizing with their clients and taking action and do their job. It really is that simple. It is as simple as putting the full amount of refills on a refill request from OU Pharmacy and clicking that send button. Poof, call volume reduced. Not asking a client that is sitting in front of your face that you do not want to give them some antibiotics, but would prefer them to run down to the ER and tell them to call me when you get there and I'll tell them what to prescribe; since I'm so fearful of writing the prescription myself. No, be diligent to your oath to help those sitting in your doctors office and stop passing the buck to someone else.
We have been assured that we will not have anymore issues. But, I see the hesitation upon every visit. I see that I have to get blood drawn as a fasting lab; meaning they are checking my cholesterol and I am told my reading is too high. The doctor tells me he doesn't want to write the script, but, please just go to the general store and get some fish oil. Why? He doesn't why to write the script. HIV can raise your cholesterol I have been told, over and over. And I am also told, over and over, they are too fearful to take ownership to write prescription for it. There is no logic; there is no sense of reason; there is no sense of empathy for someone who needs a script for insurance to cover my cholesterol medication. That is exactly why I think they will not do it. Medical fundamentalist whom do not want you to use insurance to buy your cholesterol medication, because that would be some kind of Socialist Agenda now, right? Regardless, in any other world, that is work avoidance; not complying to the definition of your job.
If you have issues with your HIV healthcare provider, especially if they are Ryan White grant recipients, speak to a manager, or that managers boss. Lay out the basic facts and just simply ask why they are not doing their job. Let them look into the issue and chances are that they will get the issue fixed.
Please, subscribe to this blog. As I have been reviewing my thoughts about other experiences and will be covering them in upcoming posts.
Thanks,
Day in the Life of a HIV Positive Man
For a little background for those who don't know me: I help run an online community of those who are disabled; our number group members is about 2,000. So, I'm not a stranger to hearing about medical issues that arise with healthcare providers. Along with being a good support group for each other, I am in a unique position to hear about a variety of negative issues in healthcare that happen to people aside from myself.
Recently, I had a more than negative experience that I'm finding all too common with how doctors conduct themselves. With my recent experience, I thoughts that I would start writing about them. I am hoping that those that find themselves having issues with HIV doctors or other doctors will find some comfort in knowing that they are not alone and to help in some way let the medical community identify quality care; how to recognize issues within an organization and to set it on a path towards success as defined by client satisfaction and less about arbitrary standards set by their medical environments.
When you have HIV there are a host of related issues that can happen that need to be addressed by your doctor. HIV drugs are highly aggressive as well as HIV itself. If you have listened closely to the end of any commercial about any medication side effects are to be expected. My last couple of doctors seem to very dismissive about medication side effects; as though they are unimportant or because they do not hear much about them that they are not much of an issue. What I think is actually happening is that it is so normal for a person with HIV to have nausea, diarrhea, lack of appetite or vomiting, that it does not get talked about because it is so ongoing that the doctor should already know.
They are already perscribing medications for those things, so, it is not a topic that needs to often be brought up. However, when you or I do bring up having issues with side effects for what they already treat me for, it is as though they are dumbfounded or do not think it is important enough to try new ways of helping control those side effects. There are at a minimum a dozen different medications that can be tried if one stops being effective.
I've seen a list of medications for side effects and without naming them, I know there are medications that my last two doctors are fearful of prescribing that are highly effective at helping with many number of side effects. I've had a conversation about one medication that will help relieve HIV related neuropathy, decrease nausea & vomiting as well as insure a good appetite. It's a single pill that would replace about 6 of my current pills and has a great success rate with little to no side effects or side effects that diminish very quickly, side effects that are not negative in nature. OU's IDI clinic has it on the formulary of medications and when talking about this medication one doctor said they would never prescribe it.
The empathy to care and follow through with the oath to help those under their care has been tainted by political bias and internal moral judgments as patients quality of care is arrogantly being shat upon - and with anger in the doctors voice when bringing up the topic of the medication as an option to help me as well as reduce my intake of medications might be able to remove from my daily routine.
Because of casual office interactions from doctor to doctor, I believe this fear, moral and political bias has become common place for all the doctors at OU Medical's IDI clinic.
And now, all of the sudden I get a call from some doctors assistant or nurse, telling me that medications X, Y & Z they do not want to prescribe because they are (poof) no longer HIV related and they are trying to reduce their volume of refills that OU Pharmacy sends them and could you get your family doctor to start to prescribe please... so we do not have to do it. Also known as, we do not want to do our job anymore.
After getting the call, about not getting my HIV related medications, I called OU's IDI Clinic and asked to speak to their PR department or a manager or supervisor. I later got a called from a gentleman that I heard some of the same buzzwords; Lowering Prescription Refills and needling to free up time for those working: also known as "They have a job to do, but we have found a way to keep them from doing their job and we call it a "process or procedural changes"". My husband and I both express that our medications are clearly HIV related; it is the reason we go there. Also, that we expect them to do their job and if they have a work overload, then that is the definition of needing to hire more people to meet that demand. Sadly, some of the medications they are getting tired of refilling they would send to the OU Pharmacy with no refills on a medication that would normally get from 5 to 8 refills on a standard prescription. Well, no wonder they have more work to do. They clicked the wrong button the last time they filled it.
After that we received a call from the next escalation of the call and what do you know. We stop hearing the buzz words and was painted a pretty picture about how I was put in the wrong pile for callbacks which patiences where going to not get their refills and those who were going to get their refills. What this picture really means is that there are a stack of OU IDI Clinic's clients that they are tired of having as clients and those phone calls are going out and they are sending the message that will be typed into internet searches, "OU IDI Clinic will not fill my medications anymore. Why?" Well, if you are one of those people you have found the right page and you are not alone with this issue.
Just to sum it up. OU's IDI Clinic needs to get back to doing their job; the job of understanding clients needs, empathizing with their clients and taking action and do their job. It really is that simple. It is as simple as putting the full amount of refills on a refill request from OU Pharmacy and clicking that send button. Poof, call volume reduced. Not asking a client that is sitting in front of your face that you do not want to give them some antibiotics, but would prefer them to run down to the ER and tell them to call me when you get there and I'll tell them what to prescribe; since I'm so fearful of writing the prescription myself. No, be diligent to your oath to help those sitting in your doctors office and stop passing the buck to someone else.
We have been assured that we will not have anymore issues. But, I see the hesitation upon every visit. I see that I have to get blood drawn as a fasting lab; meaning they are checking my cholesterol and I am told my reading is too high. The doctor tells me he doesn't want to write the script, but, please just go to the general store and get some fish oil. Why? He doesn't why to write the script. HIV can raise your cholesterol I have been told, over and over. And I am also told, over and over, they are too fearful to take ownership to write prescription for it. There is no logic; there is no sense of reason; there is no sense of empathy for someone who needs a script for insurance to cover my cholesterol medication. That is exactly why I think they will not do it. Medical fundamentalist whom do not want you to use insurance to buy your cholesterol medication, because that would be some kind of Socialist Agenda now, right? Regardless, in any other world, that is work avoidance; not complying to the definition of your job.
If you have issues with your HIV healthcare provider, especially if they are Ryan White grant recipients, speak to a manager, or that managers boss. Lay out the basic facts and just simply ask why they are not doing their job. Let them look into the issue and chances are that they will get the issue fixed.
Please, subscribe to this blog. As I have been reviewing my thoughts about other experiences and will be covering them in upcoming posts.
Thanks,
Day in the Life of a HIV Positive Man
Monday, January 13, 2014
Doctor appointment day
I have a couple of main doctors. So, it seems like I am visiting the doctor all the time. Such is the life of having HIV. Today, I am seeing my doctor for pain management.
Having HIV for so long has caused chronic nueopathic pain. It is a common problem to have with HIV. Nerve damage happens with HIV. I take low dose medication for the pain. Which means I have to still live with a certain amount of pain, but that is okay with me. My only other option is to go on stronger pain medications like morphine and I do not want that, because those kind of medications make you feel like you are a zombie and still give about the same level of relief. Some other doctors I have seen seem to be pushing the stronger painkillers. I don't get why unless they get some kind of a financial kickback from the big pharmacy manufacturers.
I'm glad that I have a doctor that listens to what I say, understands the side effects that I deal with and prescribes what will help me in the best possible way.
I've just been in and out of the doctors, to the pharmacy and now to the grocery store. I am hoping to have the day wrapped up soon. I'm ready for a nap and worn out.
When it comes down to it, a day at the doctors is very stressful and to wear me out. So, try to manage stress when dealing with doctors. It's very important.
Another frustrating thing about going to one of my doctors is that my husband and I have to be seeing separately on separate visits. However, the other doctor I have to go see will see us at the same time as a family on the single visit. The doctors office that gets an F on seeing us as a couple is OU's IDI clinic (@IDIclinic). They promises over a year ago to begin seeing us as a family on a single visit. I think I'll bring this up on our next visit. We've had a few rough times on our recent visit with the doctors because I've let him know what I think about the way they operate. But, you never get things fixed unless you address them.
So, that was my day today and some of my thoughts.
Wednesday, January 1, 2014
Stress is a Silent Killer
First thing -- Happy New Year! Have you thought about Resolutions for the year?
One of the first things that I was told by several doctors and my caseworker, after finding out I was HIV positive, was that stress is the major issue that could lead to having a compromised immune system. And over the years, I have found this out first hand.
Because I have seen the effects of stress bringing down my health, I have no place for stress, stressful people or situations in my life. I'm already a bit predisposed to the effects of stress before HIV. Social settings would often be a point of stress for me and still are to this day - be that going to get groceries, large crowds or even my work environment before had to quit working and go on social security disability.
So, briefly again, I want to urge you to manage stress in your life, if you have HIV or not, stress is a silent killer. Stress can impact your immune system and lead you down a path where you medications stop working and there are only so many combinations of HIV medications you can try before you run out of options. The lack of options is where I currently am at in my medication therapy.
Take Inventory: Manage your stress and be fully aware of the ways stress and anxiety affects you. My advice can help save and prolong your life. So, take a good inventory of the things going on in your life. Seek out professional help to deal with emotional issues, even if you don't think you have any issues. Preferably by someone who is familiar with HIV and works in that arena of care.
Medications: It helps to work out a schedule for you medications - even using a pill planner for the month. Missing a dose of medication because you forgot is not good for you and can cause you to become resistant to medications - HIV is a smart virus and will adapt quickly. A daily pill box is an easy way to visually see if your medication has been taken for the day. Fatigue can set in when you are trying to pull pills out of the bottle a few times a day, everyday. This is what I call "Pill Fatigue" and if you have been on a treatment plan for a while you may already understand.
Support Systems: It is important to have a support system in place. Learn to lean on loved ones. If you have people in your life that you have always been able to speak to when things are getting to you, keep them in the loop. Also, it can be important to seek out professional help as a support system for depression, stress or anxiety. You have to let of a little steam every now and then, so, do it. Listen to the advise that is given back to you as well.
Set some daily health goals: Having HIV is all the more reason to have some basic health goals in mind. Make sure you eat healthy and regularly- don't skip meals. Do some regular exercise. Some HIV medications will cause your cardiovascular issues like cholesterol issues and exercise can help you feel better and hopefully avoid additional medications into your life. Make sure to get enough sleep. You body needs regular sleep to maintain a healthy life, even if you don't have HIV. Having simple health goals help you in mind, body and soul.
So, here is to a New Year and healthy living. Take some time to reflect on some things that will help you in a practical way, not just in the new year, but every day in some small way.
One of the first things that I was told by several doctors and my caseworker, after finding out I was HIV positive, was that stress is the major issue that could lead to having a compromised immune system. And over the years, I have found this out first hand.
Because I have seen the effects of stress bringing down my health, I have no place for stress, stressful people or situations in my life. I'm already a bit predisposed to the effects of stress before HIV. Social settings would often be a point of stress for me and still are to this day - be that going to get groceries, large crowds or even my work environment before had to quit working and go on social security disability.
So, briefly again, I want to urge you to manage stress in your life, if you have HIV or not, stress is a silent killer. Stress can impact your immune system and lead you down a path where you medications stop working and there are only so many combinations of HIV medications you can try before you run out of options. The lack of options is where I currently am at in my medication therapy.
Take Inventory: Manage your stress and be fully aware of the ways stress and anxiety affects you. My advice can help save and prolong your life. So, take a good inventory of the things going on in your life. Seek out professional help to deal with emotional issues, even if you don't think you have any issues. Preferably by someone who is familiar with HIV and works in that arena of care.
Medications: It helps to work out a schedule for you medications - even using a pill planner for the month. Missing a dose of medication because you forgot is not good for you and can cause you to become resistant to medications - HIV is a smart virus and will adapt quickly. A daily pill box is an easy way to visually see if your medication has been taken for the day. Fatigue can set in when you are trying to pull pills out of the bottle a few times a day, everyday. This is what I call "Pill Fatigue" and if you have been on a treatment plan for a while you may already understand.
Support Systems: It is important to have a support system in place. Learn to lean on loved ones. If you have people in your life that you have always been able to speak to when things are getting to you, keep them in the loop. Also, it can be important to seek out professional help as a support system for depression, stress or anxiety. You have to let of a little steam every now and then, so, do it. Listen to the advise that is given back to you as well.
Set some daily health goals: Having HIV is all the more reason to have some basic health goals in mind. Make sure you eat healthy and regularly- don't skip meals. Do some regular exercise. Some HIV medications will cause your cardiovascular issues like cholesterol issues and exercise can help you feel better and hopefully avoid additional medications into your life. Make sure to get enough sleep. You body needs regular sleep to maintain a healthy life, even if you don't have HIV. Having simple health goals help you in mind, body and soul.
So, here is to a New Year and healthy living. Take some time to reflect on some things that will help you in a practical way, not just in the new year, but every day in some small way.
Thursday, December 26, 2013
The toll of pushing it too far.
It's the day after Christmas, five something in the AM, and lay awake in bed. Not being able to sleep is common for me. I take my sleep as I can get it. A nap here and there as needed.
Yesterday, we ate with my husband's family. We stayed long enough to wait for everyone to arive and eat... about two hours. Which was about all I could handle before getting worn out.
Having lived with HIV for more than a decade and having more than my fair share of health issues, I come to know my limits. I know this is my first entry, in due time I will cover the issues and complications in my life.
My birthday was on the 21st. A pretty unenventful day. These days it just nice to have a quiet day to and relax, even if it is a birthday. I've found myself being pissed after going out to eat with family a few days after my birthday. I've learned that I should not expect much from my family. My hubby and I have paid for the birthday meals (and some movies) for each of the members over the last year or two. Here we are with the lowest income and a table of gathered family and on my birthday and my hubby pays the bill again. Yep, freaking Dutch.
Needless to say, we are not paying for anymore birthday meals. In general, I think I'm getting tired of family. The lack of compassion. My expectations are too high and I'm just going to have to learn to adjust. Certainly stop wasting my money on them. They are just going to have to be blessed with nothing more tnan my presents or the lack of it.
Going back to what I said in the beginning, I have to know my limitations; emotionally, financial and physically. At this state in my life being over invested takes its toll upon me. If I can give any advice it would be to fully be aware of your limits and if you have the tendency to over reach and push yourself too far.
Too often I have pushed myself to much and my health has suffered for it
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