Sunday, March 27, 2016
Easter Sunday Thought Of The Week: Losing My Faith
After getting sick, I wondered how there could be a God that would allow something like this to happen to me. A single mother who has always tried to be good, and do good. A person who was trying so hard to be healthy and change her life for the better, and for the better of her daughter.
It's hard to continue to believe there is a God, or even a higher power, after you suffer such horrible tragedies and nothing seems to get better, only worse. I fell into depressions and simply lost my faith and my willingness to believe there was any good left in the world.
Drinking for many years and hanging with the wrong crowd only compounded my lack of faith. I really had no reason to believe in a God or anything greater than me that could be capable of doing any good. It was easier just to give up hope than to struggle with the why. The words "Godless bunch" really rang true to me back in those days. It seems many people who go through terrible tragedies lose their faith with God and turn to a darker side.
Even through my most recent struggles, I have been trying to get back to having some kind of faith. What that faith lies in, I am still unsure, but I do know there is something powerful that can help steer us back to a place of good, and a place of healing. It's important to hang on to something that gives a person hope that things will get better. As difficult as that can be to do, I do feel it's extremely important.
This post has been in my drafts for a while, and today I felt was the perfect day to finish it and get it published. I am still unsure what I truly believe in, and on days like today I really just go through the motions, but I can respect the story, and I can respect others' faith in God and in Jesus. Where my faith lies remains a mystery, but I am getting back to a place of faith and that's good.
It's hard to continue to believe there is a God, or even a higher power, after you suffer such horrible tragedies and nothing seems to get better, only worse. I fell into depressions and simply lost my faith and my willingness to believe there was any good left in the world.
Drinking for many years and hanging with the wrong crowd only compounded my lack of faith. I really had no reason to believe in a God or anything greater than me that could be capable of doing any good. It was easier just to give up hope than to struggle with the why. The words "Godless bunch" really rang true to me back in those days. It seems many people who go through terrible tragedies lose their faith with God and turn to a darker side.
Even through my most recent struggles, I have been trying to get back to having some kind of faith. What that faith lies in, I am still unsure, but I do know there is something powerful that can help steer us back to a place of good, and a place of healing. It's important to hang on to something that gives a person hope that things will get better. As difficult as that can be to do, I do feel it's extremely important.
This post has been in my drafts for a while, and today I felt was the perfect day to finish it and get it published. I am still unsure what I truly believe in, and on days like today I really just go through the motions, but I can respect the story, and I can respect others' faith in God and in Jesus. Where my faith lies remains a mystery, but I am getting back to a place of faith and that's good.
Wednesday, March 23, 2016
My First Appointment With U of M
My first appointment at U of M went well. It was short and sweet. The facility is amazing! The staff and doctors are amazing. The neurologist had a lot of insight and ideas into what he believes is going on with my body, and has been going on with my body since my first episode in 1997 that left me with residual weakness in my lower half.
I had to do quite a bit of searching to find a hotel with beds that were low enough for me to get in and out of unassisted. Although my daughter is a skilled CNA and could lift me in and out of bed no problem, I see no need to put her through that when I can simply find a hotel with low enough beds. Not to mention I get up several times a night to use the bathroom and I would never in a million years wake her that many times to do so.
 |
| Heading in to Minneapolis for my first appointment with U of M |
The hotel I did find was awesome! The Aloft in downtown Minneapolis was only $93.00 for a double queen bed wheelchair accessible room, and it was ACTUALLY ACCESSIBLE! I end up having issues with so-called "accessible" rooms when I get in there and the bathroom door isn't wide enough, or it opens into the bathroom so I can go in and close the door at the same time. But, this hotel had a sliding barn door style door on the bathroom with a full length mirror and a HUGE shower with fold down seats and a removable shower head. The beds are platform beds that were the perfect height for me. All in all I was very happy with everything about this hotel; the price, the accessibility, the staff, the location. I give it an A+ for sure!
 |
| Aloft Hotel, Downtown Minneapolis - yay for low platform beds |
We even had a nice view of the new stadium! The sun was shining bright as soon as we walked in, and I really needed that positive and bright atmosphere to brighten my spirits and really make me feel welcome and safe the night before my appointment.
My grandson loved the bed, and he even got a bath in the bathroom sink! It was so much fun hanging out with my daughter and grandson. We laughed and enjoyed the quiet, bonding time. We haven't had much of that since the little guy was born. My daughter has been busy with him, and work, and all her other grown-up responsibilities, and I have been busy with my health issues and doctor's appointments, etc. It was just what we needed amidst all of our daily life responsibilities. I even got a bit of a break from the constant pain that consumes my every waking moment. The pain is always there, but every now and then when I'm enjoying myself, I get distracted enough that it's not center stage quite as much.
There was a sushi restaurant across the street from our hotel, and since it was on the second floor of the building, we were concerned about my accessibility (as usual - that's always a factor), so my daughter just went over and got us some dinner and brought it back - her treat. She's so good to me I can't even put it in words, because there aren't words great enough to match her greatness.
The following morning we left plenty early so we could find the place and get parked and inside with plenty of time to spare. All went well and everything went off without a hitch. Next time, however, I will do the valet parking like they suggested. It's just too busy and too much hassle when it doesn't cost any more to let them do it than if you do it yourself.
It's nice to actually look forward to revisiting a medical facility. I will be going back many, many times. I hope that each time is as pleasant as the first.
 |
| We even had a view of the new stadium |
 |
| Grandbaby approves! |
 |
| My loves enjoying the peaceful time. |
 |
| Had a bath in the sink! I feel great! |
 |
| Yummy Tuna Sashimi! |
 |
| Mom and son quality time :) |
 |
| Sunrise in Minneapolis |
 |
| U of M here I am |
It's nice to actually look forward to revisiting a medical facility. I will be going back many, many times. I hope that each time is as pleasant as the first.
My final step in the process was to leave 7 vials of my blood behind for testing. I have yet to receive the results, but let's hope they are good. None of the tests are anything I want to come back positive, except the copper levels. He said occasionally copper levels can be too low and that can cause problems such as mine. So, that one can be positive if it wants, because that's an easy fix!
Never Give Up
Tuesday, March 22, 2016
Saturday, March 19, 2016
Thought Of The Week: Being Disabled Sucks
For those who have been lucky enough to never have had to experience what it's like to be disabled, it's more than just an inconvenience. It can be terrifying at times. Imagine getting ready to go on a trip, but every hotel you call has beds that are too high for you to climb into, and there are no ladders or any way for you to get into them. That's the only way I know how to describe the feeling I just experienced. Add to that, it's not as if I can just sleep anywhere. My body is so racked with pain and so bent and tight, that the only way I can almost sleep is on my side with a pillow between my knees and of course my legs bent (because they don't go straight). I'm also 6' tall so I don't really fit just anywhere.
Because I am unable to stand up at all, I need a bed that's low enough that I can just transfer over from my wheelchair. In other words, a platform bed. All the hotels near U of M that offer discounts to patients don't have them. If I could still stand up, this wouldn't be an issue, and I could save a lot of money by booking with a hotel that offers discounts, but since I can't stand up, and can barely even transfer from my chair to any other surface, I had to find a hotel that offers platform beds and pay the price. It was either that or stay in a cheap, seedy motel really far away from U of M. Because of U of M's location, everything is expensive! How in the world do they expect someone like me to be able to afford this! Especially if I have to go down there multiple times! Thank God for my GoFundMe page and all my amazing supporters who have donated so far! Bless you all! I knew this was going to be a big expense, but until I really started making the plans and calling around for an accessible room (and bed), I had no idea what I was truly facing.
These are the kinds of things someone like me faces every single minute of every day. If it's not the bed issue, it's the bathroom doors aren't wide enough for my chair (yes, even the "accessible" rooms). Or, the doors are wide enough, but they open IN to the bathroom so once I'm in there, there's not enough room to close the door because my chair is in the way. People who have never had to experience being in a wheelchair and being confined to one, don't really understand all the tiny issues that become huge issues for us. Even my friends and family say to me, "I would have never thought of that -- it's amazing the things we take for granted." How true. My life is filled with nothing but obstacles; from too narrow doorways to rugs on the floor that my casters get caught up in, to things on the floor that I have to bend over and pick up because it's not like I can just step over them. It's a constant battle to just get from point A to B.
So, I found a hotel with platform beds, and it's only about a mile from U of M. It's actually a very nice hotel, and wasn't too insanely expensive, thank God. I am looking forward to relaxing there Sunday night before my appointment on Monday morning. I guess if I have to go through all of this, at least I can stay in a nice hotel and enjoy some small luxuries as best I can. I'll just eat less.
Never Give Up
Because I am unable to stand up at all, I need a bed that's low enough that I can just transfer over from my wheelchair. In other words, a platform bed. All the hotels near U of M that offer discounts to patients don't have them. If I could still stand up, this wouldn't be an issue, and I could save a lot of money by booking with a hotel that offers discounts, but since I can't stand up, and can barely even transfer from my chair to any other surface, I had to find a hotel that offers platform beds and pay the price. It was either that or stay in a cheap, seedy motel really far away from U of M. Because of U of M's location, everything is expensive! How in the world do they expect someone like me to be able to afford this! Especially if I have to go down there multiple times! Thank God for my GoFundMe page and all my amazing supporters who have donated so far! Bless you all! I knew this was going to be a big expense, but until I really started making the plans and calling around for an accessible room (and bed), I had no idea what I was truly facing.
These are the kinds of things someone like me faces every single minute of every day. If it's not the bed issue, it's the bathroom doors aren't wide enough for my chair (yes, even the "accessible" rooms). Or, the doors are wide enough, but they open IN to the bathroom so once I'm in there, there's not enough room to close the door because my chair is in the way. People who have never had to experience being in a wheelchair and being confined to one, don't really understand all the tiny issues that become huge issues for us. Even my friends and family say to me, "I would have never thought of that -- it's amazing the things we take for granted." How true. My life is filled with nothing but obstacles; from too narrow doorways to rugs on the floor that my casters get caught up in, to things on the floor that I have to bend over and pick up because it's not like I can just step over them. It's a constant battle to just get from point A to B.
So, I found a hotel with platform beds, and it's only about a mile from U of M. It's actually a very nice hotel, and wasn't too insanely expensive, thank God. I am looking forward to relaxing there Sunday night before my appointment on Monday morning. I guess if I have to go through all of this, at least I can stay in a nice hotel and enjoy some small luxuries as best I can. I'll just eat less.
Never Give Up
Friday, March 18, 2016
Road Trip
So, I'll be leaving Sunday morning to head to Minneapolis and get settled in at a hotel. My appointment at University of Minnesota Medical Center is at 8:55 Monday morning. I'm excited, scared, frustrated, and looking forward to the drive, but not looking forward to the drive - if that makes any sense. I think it will be nice to get a little road trip in and get away for a day or two, but it's not as if I'm going to do anything fun. I will just enjoy whatever I can and keep my hopes up that they will treat me well and we are on the road to figuring something out in regards to my weird, angry body.
I will take pictures and of course update a lot!
I will take pictures and of course update a lot!
Thursday, March 17, 2016
Wednesday, March 16, 2016
Chronic Illness: How Quickly Things Change
My life used to revolve around work, exercise, and whatever little bit of social life I had. Now it revolves around doctors appointments, tests, medicine refills, and constant worry about what the future holds. A person can go through life day after day doing the same routine, never knowing that one day it can all change and become a very different kind of routine. The kind of routine some people are lucky enough to never experience.
I spend my days scheduling appointments, collaborating my schedule with my daughter's so that she can either take off of work or find other child care, and keeping track of when was the last time I took what pill and when do I need to take another one. I'm almost always tired, I can't drink alcohol, and my social life has come to a near screeching halt. It's tough to muster the energy to do anything beyond care for yourself when your body is nothing but constant work. After a day of fighting pain, with every movement hurting so badly you dread just putting on your shoes, all a person wants to do is lay down in bed and stay there. Being social and having "fun" is a thing of the past. I do my best, but it's slowly slipping between my fingers and just another aspect of my old life falling away.
I will not let this become my normal. This is a temporary mountain I must climb, as I've done before, and will do again. At least this time I'm one step ahead by being more educated and having the strength I didn't know I had before. This time it's going to happen on my terms.
I just want my life back, but the unfortunate truth is I can't have that until I get my body back. The biggest question haunting me day after day is; will I ever get it back? I wish I could have been one of the lucky ones who never really had much more than a bad flu or a broken bone, but I'm one of the "lucky" ones who's had several different medical conditions that are not just an annoyance, but a complete life changer. I've learned to accept that, and in fact I'm starting to embrace it as possibly that's what I was put here to do. Maybe my purpose in life is to suffer these ills so that others don't have to in the future. Or, at least that's what I tell myself so I don't go completely insane constantly wondering "why me?".
All I can do is keep telling myself, and believing, that I will persevere. I press on - going to the appointments, taking the medications, doing the research, trying my hardest to do every tiny thing physically possible to keep my lower half moving and flexible despite its constant fight to cease up and be useless. I will not let that happen. I will fight. I will never give up.
I spend my days scheduling appointments, collaborating my schedule with my daughter's so that she can either take off of work or find other child care, and keeping track of when was the last time I took what pill and when do I need to take another one. I'm almost always tired, I can't drink alcohol, and my social life has come to a near screeching halt. It's tough to muster the energy to do anything beyond care for yourself when your body is nothing but constant work. After a day of fighting pain, with every movement hurting so badly you dread just putting on your shoes, all a person wants to do is lay down in bed and stay there. Being social and having "fun" is a thing of the past. I do my best, but it's slowly slipping between my fingers and just another aspect of my old life falling away.
I will not let this become my normal. This is a temporary mountain I must climb, as I've done before, and will do again. At least this time I'm one step ahead by being more educated and having the strength I didn't know I had before. This time it's going to happen on my terms.
I just want my life back, but the unfortunate truth is I can't have that until I get my body back. The biggest question haunting me day after day is; will I ever get it back? I wish I could have been one of the lucky ones who never really had much more than a bad flu or a broken bone, but I'm one of the "lucky" ones who's had several different medical conditions that are not just an annoyance, but a complete life changer. I've learned to accept that, and in fact I'm starting to embrace it as possibly that's what I was put here to do. Maybe my purpose in life is to suffer these ills so that others don't have to in the future. Or, at least that's what I tell myself so I don't go completely insane constantly wondering "why me?".
All I can do is keep telling myself, and believing, that I will persevere. I press on - going to the appointments, taking the medications, doing the research, trying my hardest to do every tiny thing physically possible to keep my lower half moving and flexible despite its constant fight to cease up and be useless. I will not let that happen. I will fight. I will never give up.
Tuesday, March 15, 2016
Guillain-Barre, I Hate You
I've been struggling with writing this today because I'm so sad and frustrated. The last MRI found nothing of significance to cause what's happening to me. There is mild degeneration, mild arthritis, etc, but no spinal chord issues and no tumors or lesions. I mean, this is obviously great news, but for me it's just more questions. Without something staring us in the face and saying "hi, I'm the reason you're in constant pain and your legs are tight and miserable", we are left with nothing but more questions, and more tests, and I am left frustrated and sad. I can't think of another word for how I'm feeling except sad.
So, U of M here we come. You've got your work cut out for you. Mayo may still be an option, also. I spoke with my doctor today, and he agrees I need to write a detailed letter explaining the whole story. Mayo is only seeing a very small picture of a much larger story that spans nearly 18 years now, and in my doctor's own words "this is not an easy case". I am going to write that letter, and I am also going to ask my doctor if he would be willing to write one as well. Since my records from my initial illness are long gone, it's up to me to fill in the blanks that Mayo has not yet seen.
So, here I am, back to square one. Thankfully, I officially fired my old pain doctor and now have my primary physician handling my pain management. He supplied me with a Fentanyl patch today, and so far it's making a world of difference! The only tweak that will need to be made is a stronger dose. He gave me the lowest dose just to be on the safe side, and I agreed that was the right way to go, but I can already tell I will be fine with a stronger dose, and I am definitely going to need it. The benefits of the patch are too numerous to count; starting with, I actually felt like I might be able to stand up today. I tried, but things are still too bent and too tight, but the urge was there, and I feel after having the patch a bit longer, and maybe even having to wait for a stronger dose, I might be able to start standing again. If I can do that, I can hopefully get these damn legs working better and not just being huge pains (literally).
So, U of M here we come. You've got your work cut out for you. Mayo may still be an option, also. I spoke with my doctor today, and he agrees I need to write a detailed letter explaining the whole story. Mayo is only seeing a very small picture of a much larger story that spans nearly 18 years now, and in my doctor's own words "this is not an easy case". I am going to write that letter, and I am also going to ask my doctor if he would be willing to write one as well. Since my records from my initial illness are long gone, it's up to me to fill in the blanks that Mayo has not yet seen.
So, here I am, back to square one. Thankfully, I officially fired my old pain doctor and now have my primary physician handling my pain management. He supplied me with a Fentanyl patch today, and so far it's making a world of difference! The only tweak that will need to be made is a stronger dose. He gave me the lowest dose just to be on the safe side, and I agreed that was the right way to go, but I can already tell I will be fine with a stronger dose, and I am definitely going to need it. The benefits of the patch are too numerous to count; starting with, I actually felt like I might be able to stand up today. I tried, but things are still too bent and too tight, but the urge was there, and I feel after having the patch a bit longer, and maybe even having to wait for a stronger dose, I might be able to start standing again. If I can do that, I can hopefully get these damn legs working better and not just being huge pains (literally).
Monday, March 14, 2016
On My Way To Nap In The Tube
Just about to go under anesthesia for my lumbar MRI.
It went well, and I will get results tomorrow!
Sunday, March 13, 2016
Lumbar MRI
That face, right there, is what keeps me going through all of this crap with my health. There are days I get so tired of it being such a constant force, I start to feel so much anxiety and go a little crazy, and then my daughter sends me a picture like this and it all goes away, even if just for a second.
That little boy has been, and will continue to be, my savior. He has so much happiness within him, and it's so contagious!
So, tomorrow is the MRI of my lumbar. The final section of my spine to go through the MRI. If they don't find anything tomorrow, things are going to get very complicated, as every other section, including my brain, has been clear. Knowing this is making me even more anxiety ridden than usual, and I've been blowing my daughter's phone up with all of my fears and worries, so she sent me the above picture. She bought that for my grandson, and seeing that just reminded me how true of a statement that really is, for both him and her. I love them both so much, and I make sure they feel that love constantly. That is why whatever is ailing me is going to be found, and fixed, so that I can be OK for my babies. So that I can be around for both of them and bring them the comfort and joy they deserve in their lives.
I just don't think I can handle any more bad news. I really just want this to be easy for once. I want to hear them say "we found it, and it can be removed, and you will be on your way to recovery". In my extensive experience, however, it doesn't usually go that way. In fact, it usually goes just the opposite and is the kind of news you think to yourself "wow, that would really suck to get that kind of news".
That has been my life up til now. I can't seem to just have normal health issues. They always have to be some kind of rare disease, or turn out to be a 4 pound tumor making a home in my uterus. Fibroid tumors are very common in women, and especially in my family, but I just had to be the one with the extreme case; walking around with a tumor the size of a 17-week fetus inside my body. That gets removed, and I begin to move on with my life thinking maybe I'll go for a while now without any more serious health issues, and then this comes along. Slowly my legs get tighter and tighter until I'm no longer able to stand and then they take it all the way to I am no longer able to get them to go straight. The pain only continues to increase, and I am once again left scratching my head and thinking "what the hell did I ever do in this life to deserve such weird health issues?".
I'm a firm believer in putting out positive energy and getting positive results, so I am trying my very hardest to do that this time as well, but it's getting to be harder and harder each time. I just keep telling myself it simply has to be OK for my daughter, and for my new grandson. They need me in their lives as much as I need them in mine. They need me to be OK. So, I will be. Even if this MRI doesn't find anything, U of M will. We will get this figured out, and I will go back to being off of drugs, as healthy as I can be, and exercising and being active and taking care of my grandson and daughter like I should be able to for a very long time. That's really my only wish. As much as I would love to walk again, I'm not even going to be greedy and ask for that. All I really want out of this most recent development is to go back to the way I was before this all came about. My legs were weak, but they were limber and didn't hurt. I had to use a wheelchair most of the time, but I could stand and I could climb stairs if I needed to, and I could walk a little with a walker if I needed to as well. I will be happy if I am blessed enough to go back to that. Just not being in pain, and my legs not being so tight and immobile will be the greatest blessing in the world to me right now. It doesn't sound like much, but with my luck (or bad luck) with my health, it seems like that's asking for the world.
Never Give Up
Saturday, March 12, 2016
Saturday's Thought Of The Week
I am finding it very hard to keep my head above water today. I'm feeling very overwhelmed with physical pain, and emotional pain, and it feels like whenever I'm going through some of the most difficult times in my life, there are people who insist on adding more struggle to the mix. I'm tired of getting over things. I'm tired of having things done to me that I have to get over. What if I don't want to "get over it"? What if I have reached my limit of getting over it and my tank is empty? Does anyone care about that?
People have become so much more selfish and self absorbed it's almost unbearable. There is no more sentiment to anything. Nobody creates bonds anymore, or if they do, or try, they seem to always get broken. Nothing is held sacred. I don't know what to blame, be it technology or what, but the world is becoming an unfeeling, robot-like society. It's as if it's easy to break ties because the world has become a much smaller place with the internet making us able to find someone else to fill that void within minutes. What people don't seem to understand is there will never be any real ties or real connections if this continues. How can anyone form a real and lasting bond with another human being if one, or both of them is constantly searching the vast internet for something more.
I've experienced enough pain in my 40 years that I am simply done trying. My heart has always been so big and full that I have always wanted to share it, even with the most difficult of people. My father being one of them. He's a granite statue of a man; very cold and unyielding. Not easily moved by anything or anyone, not even his own blood. For most of my life I tried over and over to show him love. I wanted him to realize that life isn't always about suffering and pain, that there are people in the world who will love you and care for you, but all that did was push him farther and farther away from me. Finally, after being hurt by him over and over and over, I just gave up. In order to preserve whatever was left in me that was good and pure, I had to let his negativity go. The problem is, I choose men who are very similar to him, and follow the same pattern of giving myself fully to try to "heal" them with my love. I pick men who have been hurt, and I want to love them so much that they no longer hurt. All that gets me... is hurt. When will the cycle ever end?
I can't stop being "me", but I can stop giving myself away. I think.
So many people have become so afraid to love. I don't think love is a bad thing, I think the inability to love is a bad thing. It will catch up with you in the end. I believe that at the end of your life, when you are approaching that time when you will no longer exist, the one regret people will have will be not allowing themselves to love more. Yes, a broken heart hurts, but it heals. What about all that wonderful stuff in the middle you're missing out on? What about all that potential happiness and joy that was wasted because of fear? Not me. I will never stop wanting to feel love and give love.
People have become so much more selfish and self absorbed it's almost unbearable. There is no more sentiment to anything. Nobody creates bonds anymore, or if they do, or try, they seem to always get broken. Nothing is held sacred. I don't know what to blame, be it technology or what, but the world is becoming an unfeeling, robot-like society. It's as if it's easy to break ties because the world has become a much smaller place with the internet making us able to find someone else to fill that void within minutes. What people don't seem to understand is there will never be any real ties or real connections if this continues. How can anyone form a real and lasting bond with another human being if one, or both of them is constantly searching the vast internet for something more.
I've experienced enough pain in my 40 years that I am simply done trying. My heart has always been so big and full that I have always wanted to share it, even with the most difficult of people. My father being one of them. He's a granite statue of a man; very cold and unyielding. Not easily moved by anything or anyone, not even his own blood. For most of my life I tried over and over to show him love. I wanted him to realize that life isn't always about suffering and pain, that there are people in the world who will love you and care for you, but all that did was push him farther and farther away from me. Finally, after being hurt by him over and over and over, I just gave up. In order to preserve whatever was left in me that was good and pure, I had to let his negativity go. The problem is, I choose men who are very similar to him, and follow the same pattern of giving myself fully to try to "heal" them with my love. I pick men who have been hurt, and I want to love them so much that they no longer hurt. All that gets me... is hurt. When will the cycle ever end?
I can't stop being "me", but I can stop giving myself away. I think.
So many people have become so afraid to love. I don't think love is a bad thing, I think the inability to love is a bad thing. It will catch up with you in the end. I believe that at the end of your life, when you are approaching that time when you will no longer exist, the one regret people will have will be not allowing themselves to love more. Yes, a broken heart hurts, but it heals. What about all that wonderful stuff in the middle you're missing out on? What about all that potential happiness and joy that was wasted because of fear? Not me. I will never stop wanting to feel love and give love.
Wednesday, March 9, 2016
Narcotic Pain Killers And Pain Contracts
I want to first extend a huge thank you, again, to those who have donated so far! Complete strangers and close friends alike have donated and shared my page, and I could not be more grateful for all of it, and all of you! Thanks to you I will be able to get to Minneapolis and back and stay in a hotel and the like. God bless.
As at the very least the tiniest thank you in return, I would like to offer a little bit of information that I was not aware of in hopes that maybe I can help someone else.
Thanks to the drug addicts and drug seekers of the world, and because I have no other option but to be on daily use narcotic pain medications, I had to enter into a "pain contract" with my pain doctor (whom I have never cared for from the very first appointment). I was under the impression that contract meant I was stuck with that particular doctor and could not switch doctors without some kind of huge hassle and possibly trouble getting my pain medication, etc. According to these contracts, you can not get your medication from different pharmacies, or try to go to different doctors to be prescribed more or different medication. You also agree to being drug tested whenever they see fit in order to prove that all you are taking are the medications being prescribed to you. There's more, but I don't remember it all, I just know I signed it because I have nothing to hide, I'm legitimately in a lot of pain, and I'll do whatever they need me to do so I can get relief from that pain; including be treated basically like a criminal during the pee test that is required. It's the most humiliating thing I've ever had to do, and it's such an outrage that us innocents have to be subjected to it in order to get what we deserve. Nonetheless, it's part of the process, and I do what is asked.
However, I honestly do not know how this doctor is still in practice, because he's horrible. His bedside manner is non-existent, he does NOT listen to a word I say, nor does he seem to genuinely care about my level of pain and the fact that it limits my daily activities to basically zero. Even under recommendation from my primary doctor who feels I should be on a fentanyl patch, this doctor refuses to even increase my dosage to any real level so I can get real relief. I have been suffering for months in excruciating pain, constantly teetering on whether or not to call an ambulance and go to the ER, but thinking maybe my next appointment he would actually, finally give me some real and substantial relief, all the while he's been keeping his "know-it-all" stance and only very gradually increasing my dosage over the course of weeks and months. (personally, I believe he's been doing this to keep me having to return to his office because he makes $230 each office visit and since he's leaving, I think he wanted to make as much off of me that he could! If he gave me substantial relief, I would have no reason to return for office visits).
My last appointment with my primary, he personally said right to my face that he felt I should be on a fentanyl patch (as did the Nurse Practitioner doing her residency with him). At my appointment with the pain doctor today he refused to prescribe the patch, and only increased my current pain meds by 2.5 mg, even though he is fully aware my pain level has been between a 7 and a 9 for literally months and I have not been able to sleep or even move without pain. On top of all of this, he personally witnessed the pain and limited movement in my legs when he made me move them for a brief examination. As I scream out in pain, he doesn't even notice.
The good news is; you can transfer your pain contract to any doctor who is allowed to prescribe narcotic pain medication, and they will even do it all for you with a simple office visit! I emailed my doctor while sitting in the pain doctor's office, and asked if it was possible to transfer my contract to him. He replied with "I'd be glad to". This entire time I've been suffering under substandard care, I could have been getting real, genuine care from a doctor I actually trust, and who knows me and trusts me and realizes what kind of pain I am actually in. Had I been aware of this fact months ago, I would have never allowed this other doctor to make one more penny off of my insurance because he simply does not deserve it. He does not do his job. I don't even care about whether or not I get a fentanyl patch, I care about receiving more than the most limited dosage increase to pain meds that I keep telling this doctor are not even close to enough. On the questionnaire I'm required to fill out at the beginning of every visit, it asks how much of your pain your current regimen is managing and I circled 0-25%, but apparently I was lying?
If you ever find yourself in a similar situation, know that pain contracts can be transferred and you can receive better care. Don't be afraid to fire a doctor who is not actually caring for you. Be proactive in your own health care, it's a must. You have to speak up for yourself and take a stand in making sure you are receiving the care you deserve. Never let any doctor make you feel like you don't deserve to not live in pain. This doctor made me feel like he knows better than I do, and that I should just listen to him and that's that. I know my body, I know the level of pain I am suffering with, I know that everyone's chemistry is very different and certain medicines affect everyone differently. I know that I will NEVER allow anyone to tell me they know more than I do when it comes to what's going on inside my own body and mind. If I'm in excruciating pain to the point that I dread putting on my shoes or even going to the bathroom, I damn well better have a doctor who's going to hear that and do whatever he can to make my life more comfortable until whatever is wrong with me can be figured out and either fixed or properly managed.
I am so glad I know this now, and I have fired the pain doctor and will finally be getting proper care from my primary whom actually cares for me in a very genuine way. Thank God! If you are ever in a similar situation, just ask questions. Do your research. Don't be afraid to speak up and take charge. It's your body, it's your health, and it's your money paying for the insurance they are billing!
Never Give Up
As at the very least the tiniest thank you in return, I would like to offer a little bit of information that I was not aware of in hopes that maybe I can help someone else.
Thanks to the drug addicts and drug seekers of the world, and because I have no other option but to be on daily use narcotic pain medications, I had to enter into a "pain contract" with my pain doctor (whom I have never cared for from the very first appointment). I was under the impression that contract meant I was stuck with that particular doctor and could not switch doctors without some kind of huge hassle and possibly trouble getting my pain medication, etc. According to these contracts, you can not get your medication from different pharmacies, or try to go to different doctors to be prescribed more or different medication. You also agree to being drug tested whenever they see fit in order to prove that all you are taking are the medications being prescribed to you. There's more, but I don't remember it all, I just know I signed it because I have nothing to hide, I'm legitimately in a lot of pain, and I'll do whatever they need me to do so I can get relief from that pain; including be treated basically like a criminal during the pee test that is required. It's the most humiliating thing I've ever had to do, and it's such an outrage that us innocents have to be subjected to it in order to get what we deserve. Nonetheless, it's part of the process, and I do what is asked.
However, I honestly do not know how this doctor is still in practice, because he's horrible. His bedside manner is non-existent, he does NOT listen to a word I say, nor does he seem to genuinely care about my level of pain and the fact that it limits my daily activities to basically zero. Even under recommendation from my primary doctor who feels I should be on a fentanyl patch, this doctor refuses to even increase my dosage to any real level so I can get real relief. I have been suffering for months in excruciating pain, constantly teetering on whether or not to call an ambulance and go to the ER, but thinking maybe my next appointment he would actually, finally give me some real and substantial relief, all the while he's been keeping his "know-it-all" stance and only very gradually increasing my dosage over the course of weeks and months. (personally, I believe he's been doing this to keep me having to return to his office because he makes $230 each office visit and since he's leaving, I think he wanted to make as much off of me that he could! If he gave me substantial relief, I would have no reason to return for office visits).
My last appointment with my primary, he personally said right to my face that he felt I should be on a fentanyl patch (as did the Nurse Practitioner doing her residency with him). At my appointment with the pain doctor today he refused to prescribe the patch, and only increased my current pain meds by 2.5 mg, even though he is fully aware my pain level has been between a 7 and a 9 for literally months and I have not been able to sleep or even move without pain. On top of all of this, he personally witnessed the pain and limited movement in my legs when he made me move them for a brief examination. As I scream out in pain, he doesn't even notice.
The good news is; you can transfer your pain contract to any doctor who is allowed to prescribe narcotic pain medication, and they will even do it all for you with a simple office visit! I emailed my doctor while sitting in the pain doctor's office, and asked if it was possible to transfer my contract to him. He replied with "I'd be glad to". This entire time I've been suffering under substandard care, I could have been getting real, genuine care from a doctor I actually trust, and who knows me and trusts me and realizes what kind of pain I am actually in. Had I been aware of this fact months ago, I would have never allowed this other doctor to make one more penny off of my insurance because he simply does not deserve it. He does not do his job. I don't even care about whether or not I get a fentanyl patch, I care about receiving more than the most limited dosage increase to pain meds that I keep telling this doctor are not even close to enough. On the questionnaire I'm required to fill out at the beginning of every visit, it asks how much of your pain your current regimen is managing and I circled 0-25%, but apparently I was lying?
If you ever find yourself in a similar situation, know that pain contracts can be transferred and you can receive better care. Don't be afraid to fire a doctor who is not actually caring for you. Be proactive in your own health care, it's a must. You have to speak up for yourself and take a stand in making sure you are receiving the care you deserve. Never let any doctor make you feel like you don't deserve to not live in pain. This doctor made me feel like he knows better than I do, and that I should just listen to him and that's that. I know my body, I know the level of pain I am suffering with, I know that everyone's chemistry is very different and certain medicines affect everyone differently. I know that I will NEVER allow anyone to tell me they know more than I do when it comes to what's going on inside my own body and mind. If I'm in excruciating pain to the point that I dread putting on my shoes or even going to the bathroom, I damn well better have a doctor who's going to hear that and do whatever he can to make my life more comfortable until whatever is wrong with me can be figured out and either fixed or properly managed.
I am so glad I know this now, and I have fired the pain doctor and will finally be getting proper care from my primary whom actually cares for me in a very genuine way. Thank God! If you are ever in a similar situation, just ask questions. Do your research. Don't be afraid to speak up and take charge. It's your body, it's your health, and it's your money paying for the insurance they are billing!
Never Give Up
Tuesday, March 8, 2016
Amazon.com's Horrible Business Practices
Several times over the past few months (including over Christmas) I shopped on Amazon.com, as millions of others do, and was subsequently charged TWICE for items I purchased. The first time this happened during Christmas time, and because of the double charge on so many items, when it came time for the items to ship, the second charge was declined and therefore the items never shipped and my Christmas gifts never made it (even though I had already been charged once when I made the purchase and the money was there) -- making me look like an asshole. That first charge is an "authorization hold" to make sure there is enough money on the card you are using for the purchase. After the seller prepares to ship the item, your card will then be charged a second time, making you, the buyer, wait for your money from the first "authorization hold" to be released back to you. Hmmm... how, in any way, shape, or form, is this a way to do business? If I buy $200 worth of items, WHY should I then be charged $400 and have to wait 3-10 days (or even longer) to get my $200 back? Not everyone can afford to do that, especially not me! So, unless I'm rich and have tons of money in the bank, I guess I won't be shopping on Amazon.com anymore!
It seems to me that the seller is the one who should have to wait for the first charge to clear, since the one who wants our business is, after all, the seller!
Every time I've made an issue about this, Amazon.com simply tells me that this is how payments are processed. OK, well, I am sure I am not the only person who will say that when I go shop somewhere else, and might have to pay a little bit more, but am not charged double and forced to be without much-needed funds for days and days, that this is just how I prefer to shop so that I am only charged once.
Since Amazon.com does not seem to care about the little guy (me), I will make it my business to care about everyone like me and make a very large issue about this. I can promise that tons of people are going to care that someone like me, a disabled single mother with very little money to begin with, is not being taken seriously by some giant company who doesn't think I matter. If Amazon.com doesn't think the little guy can reach out to millions of other customers, and potential customers, and make them look like the assholes that they are for not fixing this issue, then Amazon.com is about to realize just how wrong they are for that assumption!
*I realize I currently have ads running on my blog for Amazon.com. I plan to leave the ads running and continue to be an affiliate for Amazon.com to give them a chance to resolve this issue and change the way they process their payments. If, however, something is not done about this, I will be removing them, and continuing my campaign of smearing their name all over the internet.
 |
| Charged twice. 3 days apart. Why is this necessary? And, before the $34.19 purchase ships, they will charge me for it again. Forcing me to wait days to get my $51.78 back! That's a LOT of food and gas I'll be missing out on during that time! |
It seems to me that the seller is the one who should have to wait for the first charge to clear, since the one who wants our business is, after all, the seller!
Every time I've made an issue about this, Amazon.com simply tells me that this is how payments are processed. OK, well, I am sure I am not the only person who will say that when I go shop somewhere else, and might have to pay a little bit more, but am not charged double and forced to be without much-needed funds for days and days, that this is just how I prefer to shop so that I am only charged once.
Since Amazon.com does not seem to care about the little guy (me), I will make it my business to care about everyone like me and make a very large issue about this. I can promise that tons of people are going to care that someone like me, a disabled single mother with very little money to begin with, is not being taken seriously by some giant company who doesn't think I matter. If Amazon.com doesn't think the little guy can reach out to millions of other customers, and potential customers, and make them look like the assholes that they are for not fixing this issue, then Amazon.com is about to realize just how wrong they are for that assumption!
*I realize I currently have ads running on my blog for Amazon.com. I plan to leave the ads running and continue to be an affiliate for Amazon.com to give them a chance to resolve this issue and change the way they process their payments. If, however, something is not done about this, I will be removing them, and continuing my campaign of smearing their name all over the internet.
Friday, March 4, 2016
Finally Getting Somewhere
Unable to stand the pain in my hips any longer, I finally made an appointment with my primary care physician on March 1. He is an amazing, and very caring doctor. He is also my daughter's physician and delivered my grandson. I wanted to address the issue of my lumbar not being included in the MRI back in September that my neurologist ordered. I felt it was very odd (to say the least) that since the pain began in my hips, and has continued to get worse throughout my hips, that she would not have included that section in an MRI that proved to be very difficult to accomplish. The first attempt was no good because my legs will not go straight, and began spasming as soon as I was in the machine and then I had a subsequent panic attack. I was then referred to an open MRI, where once again the images were blurry because of the spasms that I can not control, nor can any medication we've tried, and I was claustrophobic even in the open machine. So, finally, I was put under anesthesia to get the MRI of my thoracic vertebrae which turned out to be clean - aside from some normal degeneration.
Even the technicians preparing me for the MRI were a little baffled that my lumbar was not being included. Now, it has been months that have passed, all of which I have suffered in excruciating pain, lost night after night of sleep, struggled with getting any kind of substantial pain relief, and I am finally heading to an MRI of my lumbar section on March 14, all thanks to my primary care physician who listened, and agreed with me, and took the time to really care.
Not only did he put in the order for the lumbar MRI, but he also gave me a cortisone shot in my left hip, which is the hip that makes me want to just jump in front of a train it hurts so bad, and I do believe he put in a recommendation to my pain doctor for the Fentanyl patch. In one visit, he did what three doctors over the course of several months were too negligent to accomplish.
So, now I am looking forward to what the MRI on March 14 will show. Before that I have an appointment with my pain doctor (whom I loathe) on March 8, where I will find out if in fact my primary put in an order for the Fentanyl patch. That will be substantial pain relief that I should have had this entire time. After the MRI on the 14th, I then head down to Minneapolis on March 20 to stay the night and go to a 9:00 am appointment with U of M for further care. It's such a shame I have to go 7 hours away from my home to get the proper care, but I am looking forward to letting these doctors get their hands and minds on my case and hopefully make some real progress in making me well.
Even the technicians preparing me for the MRI were a little baffled that my lumbar was not being included. Now, it has been months that have passed, all of which I have suffered in excruciating pain, lost night after night of sleep, struggled with getting any kind of substantial pain relief, and I am finally heading to an MRI of my lumbar section on March 14, all thanks to my primary care physician who listened, and agreed with me, and took the time to really care.
Not only did he put in the order for the lumbar MRI, but he also gave me a cortisone shot in my left hip, which is the hip that makes me want to just jump in front of a train it hurts so bad, and I do believe he put in a recommendation to my pain doctor for the Fentanyl patch. In one visit, he did what three doctors over the course of several months were too negligent to accomplish.
So, now I am looking forward to what the MRI on March 14 will show. Before that I have an appointment with my pain doctor (whom I loathe) on March 8, where I will find out if in fact my primary put in an order for the Fentanyl patch. That will be substantial pain relief that I should have had this entire time. After the MRI on the 14th, I then head down to Minneapolis on March 20 to stay the night and go to a 9:00 am appointment with U of M for further care. It's such a shame I have to go 7 hours away from my home to get the proper care, but I am looking forward to letting these doctors get their hands and minds on my case and hopefully make some real progress in making me well.
Subscribe to:
Posts (Atom)