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.
Thursday, March 6, 2014
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!
Thursday, September 12, 2013
Ortho Update
I paid the orthopedic a visit today to discuss discomfort in my right hip. They took a few X-rays. I sat around and waited for my name to be called. To my surprise, he was on time and it didn’t take long for the results. The right Femoral head is breaking down around the hip socket in the exact same manner the left femur is fracturing around my knee joint.
There are several treatment options. 1. Bite the bullet and deal with the pain. 2. Injections, such as cortisone. 3. Weight loss and low impact exercise IE; water aquatics, elliptical trainer, & stationary bike. 4. Hip replacement.
I am choosing options 1-3 for the time being. A hip replacement is inevitable, but we’ll start with a hip injection next week. The goal is get me through knee replacement and rehab without needing to focus too intensely on the hip.
As for the knee, there is nothing to do between now and Oct 4th. I questioned the possibility of a cortisone injection in attempt to control pain. This was shot down. To my surprise, they don’t perform joint injections within 3 months prior to surgery. I am supposed to stay as immobile as possible, avoid stairs and attempt to lose 20lbs in 3 weeks. The weight loss is little steep so I’ll shoot for 10lbs.
Breakdown: Good news – Surgery is still on for Oct 4th. Bad news – There is little to no pain relief in sight for the next 3 weeks. The Crystal Ball – The right hip will eventually need surgery. That’s the long and short.
Cheers!
There are several treatment options. 1. Bite the bullet and deal with the pain. 2. Injections, such as cortisone. 3. Weight loss and low impact exercise IE; water aquatics, elliptical trainer, & stationary bike. 4. Hip replacement.
I am choosing options 1-3 for the time being. A hip replacement is inevitable, but we’ll start with a hip injection next week. The goal is get me through knee replacement and rehab without needing to focus too intensely on the hip.
As for the knee, there is nothing to do between now and Oct 4th. I questioned the possibility of a cortisone injection in attempt to control pain. This was shot down. To my surprise, they don’t perform joint injections within 3 months prior to surgery. I am supposed to stay as immobile as possible, avoid stairs and attempt to lose 20lbs in 3 weeks. The weight loss is little steep so I’ll shoot for 10lbs.
Breakdown: Good news – Surgery is still on for Oct 4th. Bad news – There is little to no pain relief in sight for the next 3 weeks. The Crystal Ball – The right hip will eventually need surgery. That’s the long and short.
Cheers!
Thursday, September 5, 2013
The Painful Truth
For almost 2 years, I anxiously awaited a surgeon to approve knee replacement surgery. Here is the twist. Less than 4 weeks out from surgery and tomorrow I will be calling that very same orthopedic surgeon to discuss my hip and possibly to postpone the replacement.
I fractured my right hip back in November and it hasn’t been the same since. It has actually been a larger distraction than the left knee. The pain has become intolerable and needs addressing. Horrifying to think there is a more pressing matter than fixing a broken femur and faulty knee but it is true.
If nothing else, it gives me a reason to write more every day. Honestly…What’s the point of a blog if you don’t write?
Cheers…
I fractured my right hip back in November and it hasn’t been the same since. It has actually been a larger distraction than the left knee. The pain has become intolerable and needs addressing. Horrifying to think there is a more pressing matter than fixing a broken femur and faulty knee but it is true.
If nothing else, it gives me a reason to write more every day. Honestly…What’s the point of a blog if you don’t write?
Cheers…
The Spoon Theory is a savior
Five years. Five years, I’ve struggle to explain the invisible. If you saw me in a booth at your local diner drinking coffee and enjoying breakfast, you’d say I look normal. “He’s nothing more than an overweight, bald man stuffing his face.” You can’t see the blood disease that lies dormant in my veins. You can’t see the broken leg, cracked knee cap, or fractured hip. You can’t see the never-ending pain pulsing through my body.
You can’t possible understand how each moment of my day/week/month needs to be planned and scheduled. Most people just get up and go. They know not of restraints or limits of energy. They know not of the invisible diseases, aches, pains, etc., that limit so many people.
Today, I was introduced to The Spoon Theory written by Christine Miserandino. I thank Raine Vollor for the introduction. I repeat. Five years, I spent trying to explain something, which Ms. Miserandino writes about so easily. She lives with Lupus and found herself trying to explain her chronic pain and daily routine to her best friend. Hence, she created the Spoon Theory. The theory based on Lupus can easily be used for cancer, Rheumatoid Arthritis, Chronic Fatigue Syndrome and many more.
Attached is a link to her article. I found solace in her words. When you hear me referencing “spoons” for now on, you’ll know why. It will be our inside joke.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
PS. There are no surgical updates as the date was moved to Friday October 4th.
Cheers!
You can’t possible understand how each moment of my day/week/month needs to be planned and scheduled. Most people just get up and go. They know not of restraints or limits of energy. They know not of the invisible diseases, aches, pains, etc., that limit so many people.
Today, I was introduced to The Spoon Theory written by Christine Miserandino. I thank Raine Vollor for the introduction. I repeat. Five years, I spent trying to explain something, which Ms. Miserandino writes about so easily. She lives with Lupus and found herself trying to explain her chronic pain and daily routine to her best friend. Hence, she created the Spoon Theory. The theory based on Lupus can easily be used for cancer, Rheumatoid Arthritis, Chronic Fatigue Syndrome and many more.
Attached is a link to her article. I found solace in her words. When you hear me referencing “spoons” for now on, you’ll know why. It will be our inside joke.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
PS. There are no surgical updates as the date was moved to Friday October 4th.
Cheers!
Thursday, June 27, 2013
For those who want to walk, we will cut you.
New England summer weather is the worst for one who’s had an ACL replacement, fractured back, fractured hip, or currently broken femur. Humidity rises. Temperature rises. Humidity drops. Temperature drops. Throw in the occasionally thunderstorm and it all equals chronic pain.
However, I digress.
Several updates for those keeping score at home. First, dad is finally out of the hospital. After a brief 18 night stay between the Union Hospital in Lynn and Beth Israel in Boston, dad is half cured. Believe me, when it is called the “practice” of medicine, they aren’t joking.
Secondly, my son earned his orange belt in Kempo karate this past Monday. I am an extremely proud papa-bear. I love watching him perform karate. He puts in the effort and earns his awards.
Thirdly, my mom found a part-time job. This is excellent news. She has searched and searched to no avail. Hopefully, this will work out well, where she can stay busy and earn a little extra spending money.
Fourthly, I participated in my 4th American Cancer Society Relay for Life. For the first time, I was accompanied by my son and mom. Half-dozen friends came to support our team and assist in pushing my wheelchair around the track. I am grateful to everyone’s contributions, whether it was monetary, time or effort.
Lastly, surgery is scheduled for August 16th to repair and replace my left knee. This will include a revision of cutting & repairing my femur and a total knee joint replacement. I should be in the hospital up to 3 days, followed by 1 month of in-home physical therapy and 3-4 months of out-patient physical therapy. Surgery could have happened as early as July 19th but I opted to share my summer with Gabe instead of recovery.
I look forward to spending many summer days with my son, friends, and family and endure a long recovery from surgery in hopes of doing it all better next year.
Cheers!
However, I digress.
Several updates for those keeping score at home. First, dad is finally out of the hospital. After a brief 18 night stay between the Union Hospital in Lynn and Beth Israel in Boston, dad is half cured. Believe me, when it is called the “practice” of medicine, they aren’t joking.
Secondly, my son earned his orange belt in Kempo karate this past Monday. I am an extremely proud papa-bear. I love watching him perform karate. He puts in the effort and earns his awards.
Thirdly, my mom found a part-time job. This is excellent news. She has searched and searched to no avail. Hopefully, this will work out well, where she can stay busy and earn a little extra spending money.
Fourthly, I participated in my 4th American Cancer Society Relay for Life. For the first time, I was accompanied by my son and mom. Half-dozen friends came to support our team and assist in pushing my wheelchair around the track. I am grateful to everyone’s contributions, whether it was monetary, time or effort.
Lastly, surgery is scheduled for August 16th to repair and replace my left knee. This will include a revision of cutting & repairing my femur and a total knee joint replacement. I should be in the hospital up to 3 days, followed by 1 month of in-home physical therapy and 3-4 months of out-patient physical therapy. Surgery could have happened as early as July 19th but I opted to share my summer with Gabe instead of recovery.
I look forward to spending many summer days with my son, friends, and family and endure a long recovery from surgery in hopes of doing it all better next year.
Cheers!
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