The past week has been painful and uncomfortable. Not since my knee replacement have I needed to take so much pain medication. Aleve. Oxycodone. Even Morphine. Nothing gives me enough relief for a decent night’s sleep or close to a pain-free day.
Right hip replacement surgery is scheduled for late June. Once that is done, what next? Right knee replacement? Left hip replacement?
It is hard “making the best of things”, when there is constant pain. When does my physical pain end? I don’t want to rely on Social Security to survive. I don’t want to live with my parents because I can’t take care of myself. I don’t want to feel like my days are passing with no meaning.
I want attention. I think everyone does. Shit. I even took on a position in lodge to help and in some demented way feel needed. Unfortunately, my position is underappreciated and its importance overlooked.
What really upsets me is the appeal process with Social Security for disability benefits. I am completing all the same paperwork as in January and they denied me then. Why should this time be different? I’m royally screwed if I lose this appeal. I can’t physically or mentally hold down a full time job right now. It would be impossible.
Too many people recently mention how life is unfair. When my lymphoma went into remission, I thought my unfair days were behind me. I was wrong. Seems the cure has left me worse off than the disease. All I have now are more bills, more pain, and fewer friends.
Venting is healthy. Thank you to those who stand by my side.
Cheers.
Wednesday, March 26, 2014
Thursday, March 13, 2014
Here’s a smidge of good news for the weary. After 4 phone calls and 2 weeks of waiting, my total right hip replacement surgery is scheduled for June 20th. The date is later than I would have liked but they promised me a spot on their cancelation list if a sooner date should arise.
Otherwise, life is peachy or at least I’ll have you believe it as such.
Cheers.
Otherwise, life is peachy or at least I’ll have you believe it as such.
Cheers.
Tuesday, March 11, 2014
Time to be a bother
In one of last week’s posts, I mentioned speaking with the orthopedic surgeon’s office to schedule a total right hip replacement. The first call was made Friday, Feb 28th. The young lady assured me I’d be called back with a schedule that afternoon or the following Monday. I received no call Friday afternoon or Monday.
Fast forward to last Friday March 7th, I call and leave another message about scheduling the hip surgery. Their voice mail states all calls will be returned within 24 hours. Which brings us to today, Tuesday March 11, 2014, and I am still without any surgical information.
I now have a new plan. This plan involves me calling their office every morning at 9:30am for the foreseeable future until I get what I want. Since Saturday I’ve been switch-hitting between a cane and crutches. Ambulating has become tedious and I need to know there is a finish line up the road.
Here’s a bit of good news. Yesterday, I found enough energy to shower. That had been 3 days in the making due to pain and fatigue. And last night I doubled my usual sleep intake from 2 to 4 hours. It was either the Morphine or exhaustion. Either way, I’ll take it.
My weekend was decent. I helped Gabe practice for his second drum lesson. We spent most of our time watching live drum sessions on YouTube. He seems really engaged with the thought of playing the drums. It is fun watching him get excited over what was such a large portion of my life.
I’d like to wish my mom a Happy Birthday. I’ve been homebound since Saturday and am without card, but hope she reads this. I know I can be a pain in the ass mom, but I love you. I don’t take for granted everything you do for me or anyone else. You always find the strength even when it is near impossible to grasp. Happy Birthday!
My plans for the week are as follows: Harass the orthopedic office until surgery is scheduled. Drive to Dana Farber for prescription refills. Go to lodge rehearsal Wednesday night. Visit Gabe’s school Thursday for a presentation on Black History Month. Take mom and dad out Friday night for their combined birthday dinners. Of course, run other random errands and hopefully I see Raine.
That is all for now.
Cheers.
Fast forward to last Friday March 7th, I call and leave another message about scheduling the hip surgery. Their voice mail states all calls will be returned within 24 hours. Which brings us to today, Tuesday March 11, 2014, and I am still without any surgical information.
I now have a new plan. This plan involves me calling their office every morning at 9:30am for the foreseeable future until I get what I want. Since Saturday I’ve been switch-hitting between a cane and crutches. Ambulating has become tedious and I need to know there is a finish line up the road.
Here’s a bit of good news. Yesterday, I found enough energy to shower. That had been 3 days in the making due to pain and fatigue. And last night I doubled my usual sleep intake from 2 to 4 hours. It was either the Morphine or exhaustion. Either way, I’ll take it.
My weekend was decent. I helped Gabe practice for his second drum lesson. We spent most of our time watching live drum sessions on YouTube. He seems really engaged with the thought of playing the drums. It is fun watching him get excited over what was such a large portion of my life.
I’d like to wish my mom a Happy Birthday. I’ve been homebound since Saturday and am without card, but hope she reads this. I know I can be a pain in the ass mom, but I love you. I don’t take for granted everything you do for me or anyone else. You always find the strength even when it is near impossible to grasp. Happy Birthday!
My plans for the week are as follows: Harass the orthopedic office until surgery is scheduled. Drive to Dana Farber for prescription refills. Go to lodge rehearsal Wednesday night. Visit Gabe’s school Thursday for a presentation on Black History Month. Take mom and dad out Friday night for their combined birthday dinners. Of course, run other random errands and hopefully I see Raine.
That is all for now.
Cheers.
Thursday, March 6, 2014
I must admit the past 6-7 days have taken quite the toll on me. Emotionally, physically, and mentally I'm at breaking points. Some more than others. Physically, I know I'm broken. X-rays show the proof of broken and corroding bones in both my right hip and knee. Emotionally, I'm sad, angry, depressed, which is mentally driving me mad. I'm confused about relationships with my friends. I'm upset with my inability to leave well enough alone and I'm disappointed in always be judged for my attitude and condition. The stress affects me physically by increasing my pain levels, causing additional muscle aches, and unfortunate stomach issues resulting in daily bowel problems. I'm tired of not sleeping. I'm tired of the pills. I'm tired of never feeling like I belong.
Yesterday, my son asked me why I sounded so sad. All I said was, "hello". Today, he barely spoke and I actually hung up the phone on him. I begin to question my own veracity.
Always alone in a crowded room, lost in the voices of a clouded mind.
Good night.
Yesterday, my son asked me why I sounded so sad. All I said was, "hello". Today, he barely spoke and I actually hung up the phone on him. I begin to question my own veracity.
Always alone in a crowded room, lost in the voices of a clouded mind.
Good night.
Wednesday, March 5, 2014
Eyes wide open
Eyes open. Eyes close. Eyes open. Eyes close. Bladder calls. Eyes close. Roll over. Knee attacks. Hip attacks. Eyes open. Bladder calls. 3:32A.M. Stand, cringe, limp, urinate, wash, limp, cringe, and sit down.
Prior to midnight, I took Oxycodone and Ambien. One relieves pain and the other keeps me asleep at night. Both work to complete their intentions, neither able to do so.
This isn’t new. Same song, different night. Some nights are laden in bad dreams. Some nights my mind just runs wild and is impossible to turn off. Hip pain. Knee pain. Chest pain. Joints lock. Muscle aches. Nightmares of running, trying to catch up. Maybe it is the secretary duties at lodge I’m running after, or social security to overturn their ruling. Maybe I’m chasing the life, I had prior to cancer. Either way, I don’t sleep.
Tonight I ramble. Tonight I research. Tonight I tried to help a brother who is worse off than me.
I have a brother (fraternal), who is confined to a wheel chair, but used to teach the youth of America how to act on stage. He has been crippled with Multiple Sclerosis. He has no use of his legs, left arm, and partial movement in his neck.
I took it upon myself and turned rogue to help a brother. I sent message to the Ivory Tower and hopes to remit my brother’s payment for a life-time. I am certain this payment would benefit him and his family in other ways.
I know what it is like to be disabled and reach for life lines just out of your stretch. It was a selfish and noble act. I performed this act, hoping if one day my health takes another downward spiral my brothers will do the same for me.
I celebrated a 7 month anniversary with my special girl yesterday. She must be special because she makes me special. My son started drum lessons and didn’t wamt it to end. It makes me proud seeing him pick up where I left off. Most importantly, I wouldn’t be here now, if it weren’t for my real-life blood brother. He is the rock, who keeps me whole when I am so close to crumbling.
He assures me I’m not all doom and gloom and the past year has been quite difficult for me physically but it is all part of life. He tells me not to allow others to judge you, because they don’t walk in your footsteps.
My well is dry. So I say Good morning. 5:06am
Cheers!
Prior to midnight, I took Oxycodone and Ambien. One relieves pain and the other keeps me asleep at night. Both work to complete their intentions, neither able to do so.
This isn’t new. Same song, different night. Some nights are laden in bad dreams. Some nights my mind just runs wild and is impossible to turn off. Hip pain. Knee pain. Chest pain. Joints lock. Muscle aches. Nightmares of running, trying to catch up. Maybe it is the secretary duties at lodge I’m running after, or social security to overturn their ruling. Maybe I’m chasing the life, I had prior to cancer. Either way, I don’t sleep.
Tonight I ramble. Tonight I research. Tonight I tried to help a brother who is worse off than me.
I have a brother (fraternal), who is confined to a wheel chair, but used to teach the youth of America how to act on stage. He has been crippled with Multiple Sclerosis. He has no use of his legs, left arm, and partial movement in his neck.
I took it upon myself and turned rogue to help a brother. I sent message to the Ivory Tower and hopes to remit my brother’s payment for a life-time. I am certain this payment would benefit him and his family in other ways.
I know what it is like to be disabled and reach for life lines just out of your stretch. It was a selfish and noble act. I performed this act, hoping if one day my health takes another downward spiral my brothers will do the same for me.
I celebrated a 7 month anniversary with my special girl yesterday. She must be special because she makes me special. My son started drum lessons and didn’t wamt it to end. It makes me proud seeing him pick up where I left off. Most importantly, I wouldn’t be here now, if it weren’t for my real-life blood brother. He is the rock, who keeps me whole when I am so close to crumbling.
He assures me I’m not all doom and gloom and the past year has been quite difficult for me physically but it is all part of life. He tells me not to allow others to judge you, because they don’t walk in your footsteps.
My well is dry. So I say Good morning. 5:06am
Cheers!
Sunday, March 2, 2014
Overdue
It has been over 5 months since I utilized the power of the pen (or in this case the keyboard). I apologize for the absence. Many days have passed and many events have transpired. I will attempt to bring you up to speed.
October 2013
We last left the limp crusader (me) he was preparing for total left knee replacement surgery and an industrial strength hip injection to subdue pain. Doc anticipated the need to cut away several inches of corroded bone and insert steel rods to hold the artificial knee in position. Alas, he was able to replace my old knee without the assistance of extra rods. The bones above and below the knee joint weren’t corroded to the point of uselessness. Coupled with the hip injection prior to surgery, the whole procedure was a success.
Throughout the next few months, a team of in-home and outpatient physical therapists put my body through a rigorous regimen of exercises. We did everything from simple stretches, walking down a hallway, and low grade stationary bike, to weights, squads, and unassisted stair climbing. Happy to report my total left knee replacement went better than expected.
Of course with every victory also comes defeat. The physical therapy took quite a toll on my whole body, but most severely the right knee and hip. As I’ve mentioned in prior post, the day would come when both would need replacing and the day has come.
I visited Dr. John Ready of Brigham & Women’s hospital on Thursday, January 30, 2014 for a post-operative appointment. We did X-rays on the left knee and right hip. The knee looks perfect. The right hip showed increased damage to the already fractured femoral head. Instead of scheduling surgery, I opted for another hip injection (noting the success of prior injections). Unfortunately, the injection on February 3rd offered no relief. This past Friday morning I contacted Dr. Ready’s office to schedule a total right hip replacement and possible orthoscopic right knee operation. Knowing their timetable, the surgery won’t be scheduled until late May or early June. That’s 3-4 months of limping, using a cane, and biting a bullet.
On a related medical note, I recently filed an appeal against Social Security. They stated I am medically improved and no longer need their benefits. I should go back to a 40 hour a week schedule. This will cut off my disability check and medical insurance. They are under the guise of a 35-year old male in remission for 5 years is healthy enough to reenter the workplace. They don’t take into account my diagnosis of Avascular Necrosis (AVN) due to a prolonged use of steroids to combat Graph versus Host Disease (GVHD) as a result of a stem cell transplant to save my life from Mantle Cell Lymphoma.
One disease spawned a second disease in turn spawned a third diagnosis in turn has rendered the 4 major joints in my lower extremities to need repair. This causes hourly pain, limited mobility, fatigue, insomnia, and mental stress on a daily basis. The upcoming surgeries are pending on the assumption I’ll win my appeal.
Let’s see if I leave you with a positive vibe.
This summer I met a girl. She is quite the woman. She likes me for me and all my limitations. That is a rare breed. There is something special there, so I’m not rushing anything.
My son continues to grow. Most days I have nothing to give him besides companionship. Pain limits my ability to play with a spry 7-year old boy, who has energy to burn. But he tells me it’s ok and he loves me, and that I’m the best dad in the world. He tells me these things not because I supply him with vacations and expensive toys, but with my time and affection.
Time…time is all we have in the world. My time is spent mostly on a couch, in my bed, or in doctors’ offices. Most days I have just enough spoons to shower and feed myself. I try to make the best of what time I do spend with friends, family, strangers, and my loved ones. I know there are times I’m a bear and impossible to deal with, but isn’t that just human nature. Isn’t everyone entitled to a bad day, week, or year?
The next time we chat, I should be scheduled for more surgery. With each artificial piece they use to rebuild my body, I take another step forward in rebuilding my life. The sky is often filled with clouds. You just need to find your silver lining.
Cheers!
October 2013
We last left the limp crusader (me) he was preparing for total left knee replacement surgery and an industrial strength hip injection to subdue pain. Doc anticipated the need to cut away several inches of corroded bone and insert steel rods to hold the artificial knee in position. Alas, he was able to replace my old knee without the assistance of extra rods. The bones above and below the knee joint weren’t corroded to the point of uselessness. Coupled with the hip injection prior to surgery, the whole procedure was a success.
Throughout the next few months, a team of in-home and outpatient physical therapists put my body through a rigorous regimen of exercises. We did everything from simple stretches, walking down a hallway, and low grade stationary bike, to weights, squads, and unassisted stair climbing. Happy to report my total left knee replacement went better than expected.
Of course with every victory also comes defeat. The physical therapy took quite a toll on my whole body, but most severely the right knee and hip. As I’ve mentioned in prior post, the day would come when both would need replacing and the day has come.
I visited Dr. John Ready of Brigham & Women’s hospital on Thursday, January 30, 2014 for a post-operative appointment. We did X-rays on the left knee and right hip. The knee looks perfect. The right hip showed increased damage to the already fractured femoral head. Instead of scheduling surgery, I opted for another hip injection (noting the success of prior injections). Unfortunately, the injection on February 3rd offered no relief. This past Friday morning I contacted Dr. Ready’s office to schedule a total right hip replacement and possible orthoscopic right knee operation. Knowing their timetable, the surgery won’t be scheduled until late May or early June. That’s 3-4 months of limping, using a cane, and biting a bullet.
On a related medical note, I recently filed an appeal against Social Security. They stated I am medically improved and no longer need their benefits. I should go back to a 40 hour a week schedule. This will cut off my disability check and medical insurance. They are under the guise of a 35-year old male in remission for 5 years is healthy enough to reenter the workplace. They don’t take into account my diagnosis of Avascular Necrosis (AVN) due to a prolonged use of steroids to combat Graph versus Host Disease (GVHD) as a result of a stem cell transplant to save my life from Mantle Cell Lymphoma.
One disease spawned a second disease in turn spawned a third diagnosis in turn has rendered the 4 major joints in my lower extremities to need repair. This causes hourly pain, limited mobility, fatigue, insomnia, and mental stress on a daily basis. The upcoming surgeries are pending on the assumption I’ll win my appeal.
Let’s see if I leave you with a positive vibe.
This summer I met a girl. She is quite the woman. She likes me for me and all my limitations. That is a rare breed. There is something special there, so I’m not rushing anything.
My son continues to grow. Most days I have nothing to give him besides companionship. Pain limits my ability to play with a spry 7-year old boy, who has energy to burn. But he tells me it’s ok and he loves me, and that I’m the best dad in the world. He tells me these things not because I supply him with vacations and expensive toys, but with my time and affection.
Time…time is all we have in the world. My time is spent mostly on a couch, in my bed, or in doctors’ offices. Most days I have just enough spoons to shower and feed myself. I try to make the best of what time I do spend with friends, family, strangers, and my loved ones. I know there are times I’m a bear and impossible to deal with, but isn’t that just human nature. Isn’t everyone entitled to a bad day, week, or year?
The next time we chat, I should be scheduled for more surgery. With each artificial piece they use to rebuild my body, I take another step forward in rebuilding my life. The sky is often filled with clouds. You just need to find your silver lining.
Cheers!
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