It helps to look for them in situations that are less than desirable. Sometimes they aren't easy to see, and other times they just seem to fall in your lap. I can't think of a time when a silver lining was more apparent then one I'm about to share with you.
The reality of not being able to return to work was and continues to be harsh. I loved my job. Providing nursing care to hospitalized infants was my calling and why I pursued my RN license as a very young woman. I saw myself retiring with 40+ years of service as a NICU nurse. I can think of no other way I would have rather spent a career.
Here's the silver lining. If by some miracle I would have been able to return at the end of my medical leave of absence, I would have been back for two weeks before news came out that my position would be eliminated at the end of the year. If I had been able, I would have had to bid for a position with more hours and possibly on a different shift. Since I likely wouldn't have been able to work more days (this is the miracle scenario, ya know) I would have had to "resign" any way. Bah humbug!
Ok, so how is THAT a silver lining? I had to think hard about this before it revealed itself to me...
The utter anguish felt among my coworkers is indescribable. With the exception of but a few, lives have been turned upside down as hours and shifts have been dramatically changed. Most lost their jobs and have had to take different positions. Some had their position completely eliminated and some were not offered a position at all.
So, I was spared from the pain. Instead of killing myself to get back to work to have my job cut after just a couple months, I've had a little bit of a head start getting used to the reality of not being able to work.
Life is funny that way with all the twists and turns, sharp corners and dead-ends. God has a way of working things out. I have faith that He has a reason for my life and the way things are going for me with this damn disease. I'm a nurse at heart even if I'm not on the floor right now. I pray that He continue to reveal the silver lining of every storm cloud that dumps on me.
Saturday, December 11, 2010
Thursday, October 14, 2010
A Snail's Pace
The day I've been dreading came last week as I have had to resign from my position at work. My official last day is the last day of my medical leave on the 23rd. I’ve cried my eyes out too many times to count and it still hurts a lot. It’s hard to say goodbye to 11 years of working my dream job, *my calling*, and not have a choice about it.
It’s getting a little better though. I’m moving on emotionally at a snail’s pace, transitioning from “what was” to “what is”. It’s one of those things. You can either wallow in self pity and make everyone around you suffer, or you can pick up, suck it up, and put a smile on your face and make the best of it. It’s a lousy place to be in and I pray that time will heal my heart and I can find new joy and new meaning in new things. My frame of mind is moving me toward being joyous that I get to raise my daughter and be with her all the time. I have lots of ideas planned for us to do when the time is right and I’m excited about it.
If you think about it, say a prayer for me. That God will help me to see His plan and the big picture. That He’ll help me to be at peace with something that right now, just feels pretty rotten.
It’s getting a little better though. I’m moving on emotionally at a snail’s pace, transitioning from “what was” to “what is”. It’s one of those things. You can either wallow in self pity and make everyone around you suffer, or you can pick up, suck it up, and put a smile on your face and make the best of it. It’s a lousy place to be in and I pray that time will heal my heart and I can find new joy and new meaning in new things. My frame of mind is moving me toward being joyous that I get to raise my daughter and be with her all the time. I have lots of ideas planned for us to do when the time is right and I’m excited about it.
If you think about it, say a prayer for me. That God will help me to see His plan and the big picture. That He’ll help me to be at peace with something that right now, just feels pretty rotten.
Wednesday, July 28, 2010
Nag nag nag...
I know it's been a while since my last post. To be honest, I haven't felt particularly inspired to share.
Let's see, last week I had another birthday. I appreciate all the greetings I received! I had to laugh at myself because I use to think my birthday was such an exciting cause for celebration (it's all about me). But this year was different. I almost forgot about it within just a few days of the date. Funny how perspective changes with each passing year.
One week ago, I started a new medication (released in March of this year) called Ampyra. This is a breakthrough medication as it is the first to treat a symptom of MS. Studies showed an improvement in walking speed for about half of individuals taking it. I've tried so many meds where I either had no effect or things blew up in my face, that I have reserved exuberance for the sake of preserving my sanity. So far, no side effects. Strangely enough, I may be experiencing a slight decrease in spasticity which is not a listed benefit of the drug.
Fingers crossed, another breakthrough medication will be approved by the FDA in September which my neurologist is very excited about prescribing for me. It is called fingolimod and will be the first in a class of oral disease-modifying drugs i.e. not an injection! What happened to my hopes of receiving Rituxin? Well, I'll take what I can get, and the availability of Rituxin is further off in the distance.
The Lord gives me enough grace to make it from morning til bedtime, and the next day He gives me a fresh dose of grace. So I just keep on truckin'- taking one day at a time.
Let's see, last week I had another birthday. I appreciate all the greetings I received! I had to laugh at myself because I use to think my birthday was such an exciting cause for celebration (it's all about me). But this year was different. I almost forgot about it within just a few days of the date. Funny how perspective changes with each passing year.
One week ago, I started a new medication (released in March of this year) called Ampyra. This is a breakthrough medication as it is the first to treat a symptom of MS. Studies showed an improvement in walking speed for about half of individuals taking it. I've tried so many meds where I either had no effect or things blew up in my face, that I have reserved exuberance for the sake of preserving my sanity. So far, no side effects. Strangely enough, I may be experiencing a slight decrease in spasticity which is not a listed benefit of the drug.
Fingers crossed, another breakthrough medication will be approved by the FDA in September which my neurologist is very excited about prescribing for me. It is called fingolimod and will be the first in a class of oral disease-modifying drugs i.e. not an injection! What happened to my hopes of receiving Rituxin? Well, I'll take what I can get, and the availability of Rituxin is further off in the distance.
The Lord gives me enough grace to make it from morning til bedtime, and the next day He gives me a fresh dose of grace. So I just keep on truckin'- taking one day at a time.
Thursday, June 24, 2010
A good day
I completed my third daily IV steroid infusion this morning at the clinic which moved to Allenmore Hospital in April. I am happy about the move as it is much more convenient and pleasant for the patient. I'm feeling much stronger today, able to take several steps without my walker. Steroid "edginess" is at minimal level. The glow in my face is a nice change from the pale and tired look. I'll feel better when the temperature tones down just a touch as heat+MS+steroids does not a happy camper make out of me.
After the infusion, I had an appointment at Good Sam's pump clinic to have my pump dose adjusted. Until now, we've been conservative on the amount of increases. MS is more sensitive to changes than say stroke or brain injury individuals, so it makes for a little scarier situation when making adjustments. Too much dose- no tone, no mobility, return visit to decrease the dose. Too small an adjustment- a wasted one hour trip and back and added time to schedule a repeat visit. So I stated my case and it was agreed to make a larger adjustment in the dose. So far so good! Hopefully tomorrow this present hoorah will remain.
In addition to my three daily infusions every three months, I have been taking Methotrexate (weekly) for a month. It's a low-dose cancer drug also used for rheumatoid arthritis. So far so good. I haven't noticed changes other than mild nausea but I need to give it more time. Another possible addition is a drug called Ampyra. It is new for MS patients and is shown to improve mobility for approximately 40% of people taking it. I am awaiting insurance approval (it is horridly expensive) then will begin. If after 4 to 6 weeks there are no discernible changes, I stop taking it. No biggie. And then there's the promise drug Rituxin. My Neurologist has been working with a gentleman at Stanford to have this medication donated to me on a humanitarian basis (another big price tag and insurance denied it). He is excited to help me, but the whole FDA approval for off-label use for MS is slowing things down. If I must, I wait til it goes on the market for MS which is in about a year.
I have learned so much the last 3-4 months and my eyes are opened! These days I am not sure in which direction I should pray. So my fall back prayer is all-inclusive and huge...CURE ME! I can pray for that against all odds because God is greater than all things.
Thanks for reading...whoever you are. The day in the life of a mommy with mobility issues and a daughter that is beautifully oblivious to it all makes for interesting and fun days. I taught her the hand sign for "I Love You" and she eagerly reproduces an "L" sign. Normally this would turn it into a negative connotation but I choose to have it mean "love" and we will work on the rest later :)
After the infusion, I had an appointment at Good Sam's pump clinic to have my pump dose adjusted. Until now, we've been conservative on the amount of increases. MS is more sensitive to changes than say stroke or brain injury individuals, so it makes for a little scarier situation when making adjustments. Too much dose- no tone, no mobility, return visit to decrease the dose. Too small an adjustment- a wasted one hour trip and back and added time to schedule a repeat visit. So I stated my case and it was agreed to make a larger adjustment in the dose. So far so good! Hopefully tomorrow this present hoorah will remain.
In addition to my three daily infusions every three months, I have been taking Methotrexate (weekly) for a month. It's a low-dose cancer drug also used for rheumatoid arthritis. So far so good. I haven't noticed changes other than mild nausea but I need to give it more time. Another possible addition is a drug called Ampyra. It is new for MS patients and is shown to improve mobility for approximately 40% of people taking it. I am awaiting insurance approval (it is horridly expensive) then will begin. If after 4 to 6 weeks there are no discernible changes, I stop taking it. No biggie. And then there's the promise drug Rituxin. My Neurologist has been working with a gentleman at Stanford to have this medication donated to me on a humanitarian basis (another big price tag and insurance denied it). He is excited to help me, but the whole FDA approval for off-label use for MS is slowing things down. If I must, I wait til it goes on the market for MS which is in about a year.
I have learned so much the last 3-4 months and my eyes are opened! These days I am not sure in which direction I should pray. So my fall back prayer is all-inclusive and huge...CURE ME! I can pray for that against all odds because God is greater than all things.
Thanks for reading...whoever you are. The day in the life of a mommy with mobility issues and a daughter that is beautifully oblivious to it all makes for interesting and fun days. I taught her the hand sign for "I Love You" and she eagerly reproduces an "L" sign. Normally this would turn it into a negative connotation but I choose to have it mean "love" and we will work on the rest later :)
Wednesday, June 2, 2010
A huge milestone
I am 6 weeks post-op! This is an exciting time for two reasons: I am infection-free, and I can resume lifting more than 10 pounds (i.e. my little girl)!
I have SO much to be thankful for.
First, that recovery has gone as well as it has. No infection, no major complications, and improvement in my mobility. Immediately post-op, I was 100% wheelchair dependant. Now, I am 98% walker dependant, 2% unassisted. I haven't needed to use my wheelchair for several days now. I have a new ankle brace to help me walk which is taking a lot of getting used to, but I am optimistic that with it I can gain confidence in my steps.
Second, that I am able to parent my child on my own. I am immensely grateful to all the wonderful people who came to my house to care for her and help me during my recovery. 6 weeks is a long time, and it boggles my mind that it all came together the way it did! I am thrilled to be "on my own" in caring for her, though, she is more obstinate now than she was before surgery. Yikes!
Third, that I have so many people praying for me and thinking positive thoughts! It is difficult for me to remain as positive as my onlookers, until I look back and assess how far I have come.
Now if only I didn't have to struggle through the physical therapy exercises...
I have SO much to be thankful for.
First, that recovery has gone as well as it has. No infection, no major complications, and improvement in my mobility. Immediately post-op, I was 100% wheelchair dependant. Now, I am 98% walker dependant, 2% unassisted. I haven't needed to use my wheelchair for several days now. I have a new ankle brace to help me walk which is taking a lot of getting used to, but I am optimistic that with it I can gain confidence in my steps.
Second, that I am able to parent my child on my own. I am immensely grateful to all the wonderful people who came to my house to care for her and help me during my recovery. 6 weeks is a long time, and it boggles my mind that it all came together the way it did! I am thrilled to be "on my own" in caring for her, though, she is more obstinate now than she was before surgery. Yikes!
Third, that I have so many people praying for me and thinking positive thoughts! It is difficult for me to remain as positive as my onlookers, until I look back and assess how far I have come.
Now if only I didn't have to struggle through the physical therapy exercises...
Friday, May 21, 2010
Three Clicks of the Heel...
...and I am still in the land of Oz. Well, I shouldn't sound so negative, because thinking back on the last month, I have to admit that things are a lot better.
The first couple weeks home from the hospital were spent healing. First, my appetite returned as I backed off of the pain medication. Then, I started sleeping better at night. Slowly but surely, my body systems returned to a more normal state. Surgery and anesthesia really throw things for a loop!
I started home health physical therapy about three weeks ago. I am told by people who see me about once a week that I am moving around better. At first I didn't really believe it, but it's a consistent theme I am hearing, so it must be true. The exercises are hard to do, mentally and physically. The hardest part about it is that I can't count on one day to the next, or one hour to the next, being strong enough to do them. Consistency is important to doing them and getting stronger, so I feel discouraged when I go an entire day without exercising. I call it "falling off the wagon".
The incisions are mostly healed. The pump is okay. "We" have not bonded yet. It is large and I am reminded of it's presence every time I move. It still hurts frequently when I bend or twist just right as I have become more active. I'm told that is normal as to the location of it. Normally it would have been placed just under the skin, but on smaller framed people, it is placed under the facia for a less pronounced appearance. That is the reason it is more tender at this point.
Less pronounced appearance. Hmmpff. I look pregnant on one side of my body. The pump displaces my belly button slightly. Not that my bikini days weren't already long over, this definitely seals the deal. Like I said, "we" have not bonded, but here's the thing...
I am no longer exposing my body to that massive dose of oral Baclofen. I am not a zombie during the day and an insomniac at night. I am no longer tied to the clock. When I start begrudging the pump, I remind myself that I had no choice. It was the right move and I thank God that He made it happen so fast.
With PT and strength training, I am on my way. The pace is painfully slow. But to be fair to myself, it's two steps forward and only one step back at this point. Oh, and that window of 4 to 6 weeks of the risk of infection is narrowing. Thank God! I covet your prayers: to remain infection-free, to continue getting stronger, and to be able to walk independently soon.
The first couple weeks home from the hospital were spent healing. First, my appetite returned as I backed off of the pain medication. Then, I started sleeping better at night. Slowly but surely, my body systems returned to a more normal state. Surgery and anesthesia really throw things for a loop!
I started home health physical therapy about three weeks ago. I am told by people who see me about once a week that I am moving around better. At first I didn't really believe it, but it's a consistent theme I am hearing, so it must be true. The exercises are hard to do, mentally and physically. The hardest part about it is that I can't count on one day to the next, or one hour to the next, being strong enough to do them. Consistency is important to doing them and getting stronger, so I feel discouraged when I go an entire day without exercising. I call it "falling off the wagon".
The incisions are mostly healed. The pump is okay. "We" have not bonded yet. It is large and I am reminded of it's presence every time I move. It still hurts frequently when I bend or twist just right as I have become more active. I'm told that is normal as to the location of it. Normally it would have been placed just under the skin, but on smaller framed people, it is placed under the facia for a less pronounced appearance. That is the reason it is more tender at this point.
Less pronounced appearance. Hmmpff. I look pregnant on one side of my body. The pump displaces my belly button slightly. Not that my bikini days weren't already long over, this definitely seals the deal. Like I said, "we" have not bonded, but here's the thing...
I am no longer exposing my body to that massive dose of oral Baclofen. I am not a zombie during the day and an insomniac at night. I am no longer tied to the clock. When I start begrudging the pump, I remind myself that I had no choice. It was the right move and I thank God that He made it happen so fast.
With PT and strength training, I am on my way. The pace is painfully slow. But to be fair to myself, it's two steps forward and only one step back at this point. Oh, and that window of 4 to 6 weeks of the risk of infection is narrowing. Thank God! I covet your prayers: to remain infection-free, to continue getting stronger, and to be able to walk independently soon.
Sunday, May 2, 2010
Trip to the ED
When I left the hospital Tuesday afternoon, my physician and the pump clinic RN were concerned about the incision on my back as it seemed to not be entirely closed and was draining a little. They put a new dressing on it and told me call the surgeon's office if it continued to act up.
Wednesday, my mom checked it and there was a tiny little bit but mostly dry. The wound is pink with no outward signs of infection. But Thursday night my husband checked it and there was quite a bit more drainage. The site still looks okay, but of course I'm worried about an infection.
After a few calls to the nurse at the surgeon's office first thing Friday morning, she instructs me to go to the emergency department at Tacoma General. My dear sister dropped everything and took me in as my dear neighbor stood watchful eye over Kate so my husband could still go to work.
I was expecting the worst...labs, scans, readmission, antibiotics, surgery...
The ED physician assessed the wound and drainage, took a culture, and determined that the drainage was the result of a small seroma, or pocket of fluid that had worked it's way loose as I've become more active with bending and twisting. He redressed the wound and said it just needs to heal from the inside out.
Relieved, I was discharged and home by 3:30 in the afternoon. The drainage is continuing, but the site is pink without signs of infection. I see my rehab physician on Tuesday and surgeon on Wednesday. Please continue to pray that I remain infection free!
Wednesday, my mom checked it and there was a tiny little bit but mostly dry. The wound is pink with no outward signs of infection. But Thursday night my husband checked it and there was quite a bit more drainage. The site still looks okay, but of course I'm worried about an infection.
After a few calls to the nurse at the surgeon's office first thing Friday morning, she instructs me to go to the emergency department at Tacoma General. My dear sister dropped everything and took me in as my dear neighbor stood watchful eye over Kate so my husband could still go to work.
I was expecting the worst...labs, scans, readmission, antibiotics, surgery...
The ED physician assessed the wound and drainage, took a culture, and determined that the drainage was the result of a small seroma, or pocket of fluid that had worked it's way loose as I've become more active with bending and twisting. He redressed the wound and said it just needs to heal from the inside out.
Relieved, I was discharged and home by 3:30 in the afternoon. The drainage is continuing, but the site is pink without signs of infection. I see my rehab physician on Tuesday and surgeon on Wednesday. Please continue to pray that I remain infection free!
Wednesday, April 28, 2010
First Full Day Home
I cannot begin to thank the countless people who have stepped up and offered a lending hand. From the bottom of my heart...I hope you know I am ever so grateful.
One week ago on the 21st, I had a two hour surgical procedure at Tacoma General Hospital for the placement of an Intrathecal Baclofen medication pump. The pump rests in the lower right quadrant of my abdomen, a catheter is tunneled under my skin to my back, it is inserted through and sutured in the lumbar region of the spine, and then threaded up so that the tip rests at T-9.
The first night at TG I battled a repeat (only worse) of what I experienced following the test dose. Massively low blood levels of baclofen in my body caused my teeth to chatter and legs to twist into stiff, contorted positions. I begged the nurse to call my doctor and give me some oral baclofen. About 40 minutes after the dose, I got sick from pain medicine. I wasn't intending on needing anyone to stay with me, but my Mom stayed even though she had clinicals early in the morning. When I would start into the chattering and start moaning, she'd get up and flex my feet and massage the spasms out of my legs. As my breathing slowed, she'd fix the covers and curl up with her pillow and blanket in the corner. I felt so bad that she stayed all night, but I don't know how I would have gotten through. I love you, Mom.
The next day I was discharged from Tacoma General and admitted to Good Samaritan Hospital's Rehabilitation unit where I immediately started OT (occupational therapy) and PT (physical therapy). Immediately, the dose on the pump was adjusted up and would be two more times (daily) after that. I stayed there a total of five days.
Higher than expected levels of internal and incisional pain made it difficult to keep my head in the game, and nausea from the pain meds made it almost impossible to want to eat anything.
I was discharged home on the 27th. The pain is easing but my strength is yet to return. I will be receiving physical therapy via home health starting tomorrow.
Please pray that my body stave off infection during the next critical 5 weeks and that with good nutrition and rest, my strength will return.
One week ago on the 21st, I had a two hour surgical procedure at Tacoma General Hospital for the placement of an Intrathecal Baclofen medication pump. The pump rests in the lower right quadrant of my abdomen, a catheter is tunneled under my skin to my back, it is inserted through and sutured in the lumbar region of the spine, and then threaded up so that the tip rests at T-9.
The first night at TG I battled a repeat (only worse) of what I experienced following the test dose. Massively low blood levels of baclofen in my body caused my teeth to chatter and legs to twist into stiff, contorted positions. I begged the nurse to call my doctor and give me some oral baclofen. About 40 minutes after the dose, I got sick from pain medicine. I wasn't intending on needing anyone to stay with me, but my Mom stayed even though she had clinicals early in the morning. When I would start into the chattering and start moaning, she'd get up and flex my feet and massage the spasms out of my legs. As my breathing slowed, she'd fix the covers and curl up with her pillow and blanket in the corner. I felt so bad that she stayed all night, but I don't know how I would have gotten through. I love you, Mom.
The next day I was discharged from Tacoma General and admitted to Good Samaritan Hospital's Rehabilitation unit where I immediately started OT (occupational therapy) and PT (physical therapy). Immediately, the dose on the pump was adjusted up and would be two more times (daily) after that. I stayed there a total of five days.
Higher than expected levels of internal and incisional pain made it difficult to keep my head in the game, and nausea from the pain meds made it almost impossible to want to eat anything.
I was discharged home on the 27th. The pain is easing but my strength is yet to return. I will be receiving physical therapy via home health starting tomorrow.
Please pray that my body stave off infection during the next critical 5 weeks and that with good nutrition and rest, my strength will return.
Thursday, April 15, 2010
Master Plan
Yesterday morning, I called Dr. Morris' office to remind the office staff that I wish to be on the cancellation call list. After a few moments on her end, she says "I have a cancellation for tomorrow in Federal Way. Do you want it?" I wanted to reach through the phone...
I saw Dr. Morris this morning for a pre-surgical consult. My dear friend Alicia went along to take notes and provide a second set of ears. 30 minutes later, he told me that his assistant would be calling me within the next few days to schedule the surgery. He estimated the surgery would be in two to three weeks. I thanked him for his time, gave Alicia a hug, and came home. Excited for this last step to be done and a little on edge that this was it, I look forward to scheduling the appointment.
A call came at 4:45 this afternoon. Surgery is scheduled. Surgery is Wednesday 4/21. NEXT WEEK. I have been on the phone all day. I cannot even begin to describe what I am thinking; what emotions are going through my head. I am...processing.
Already, with my sister's help, I believe we've developed a childcare plan for 11 straight days. Amazing! I will be calling in favors from those of you who have offered your help, so stay tuned; your phone will be ringing! I'll be asking for meals for my husband and childcare, visiting while I'm in the hospital, and anything else that pops into my brain.
While Kate was napping, I went out on the porch and soaked up the sunshine. I talked to God, as I have been doing a lot lately. Naturally, there is this little voice..."is this the right course of action"? God tells me yes. Why else would He have put everything on a high speed track for me? I cannot keep going the way I have been the last 4 months. The medication ISN'T WORKING. My spasticity is getting worse day by day.
This pump has to be the answer in this regard of my MS. This pump is part of the Master Plan.
I saw Dr. Morris this morning for a pre-surgical consult. My dear friend Alicia went along to take notes and provide a second set of ears. 30 minutes later, he told me that his assistant would be calling me within the next few days to schedule the surgery. He estimated the surgery would be in two to three weeks. I thanked him for his time, gave Alicia a hug, and came home. Excited for this last step to be done and a little on edge that this was it, I look forward to scheduling the appointment.
A call came at 4:45 this afternoon. Surgery is scheduled. Surgery is Wednesday 4/21. NEXT WEEK. I have been on the phone all day. I cannot even begin to describe what I am thinking; what emotions are going through my head. I am...processing.
Already, with my sister's help, I believe we've developed a childcare plan for 11 straight days. Amazing! I will be calling in favors from those of you who have offered your help, so stay tuned; your phone will be ringing! I'll be asking for meals for my husband and childcare, visiting while I'm in the hospital, and anything else that pops into my brain.
While Kate was napping, I went out on the porch and soaked up the sunshine. I talked to God, as I have been doing a lot lately. Naturally, there is this little voice..."is this the right course of action"? God tells me yes. Why else would He have put everything on a high speed track for me? I cannot keep going the way I have been the last 4 months. The medication ISN'T WORKING. My spasticity is getting worse day by day.
This pump has to be the answer in this regard of my MS. This pump is part of the Master Plan.
Monday, April 12, 2010
Feeling Down
I hear the message..."you are so strong"...but I definitely don't feel that way.
I would like to wake up tomorrow and have this all be over. Pump done. PT done. Dose adjusted. Back to work and feeling productive. Back to life. Back to society. Back to feeling like a person.
I look at my sweet little girl. She sees me as her Mom. I do the darnedest, silliest thing and she thinks it's hysterical. Shouldn't that be enough? I caught her just now. She got a hold of my colored chap stick and applied it all over her face. She has a nice glow about her after wiping it off.
I know a lot of what's eating at me right now is the feeling of futility and self-doubt. I do believe that God has something wonderful in store for me. Shouldn't THAT be enough?
I would like to wake up tomorrow and have this all be over. Pump done. PT done. Dose adjusted. Back to work and feeling productive. Back to life. Back to society. Back to feeling like a person.
I look at my sweet little girl. She sees me as her Mom. I do the darnedest, silliest thing and she thinks it's hysterical. Shouldn't that be enough? I caught her just now. She got a hold of my colored chap stick and applied it all over her face. She has a nice glow about her after wiping it off.
I know a lot of what's eating at me right now is the feeling of futility and self-doubt. I do believe that God has something wonderful in store for me. Shouldn't THAT be enough?
Thursday, April 8, 2010
High Hopes
I had been very hopeful that the pre-surgical consult would occur such that the actual surgery would take place by the end of the month.
When I spoke with the receptionist at the surgeon's office last Thursday, she had told me that I couldn't make an appointment yet because they didn't have my chart notes. She assured me that they'd call me as soon as possible once the notes were received. I believed her, silly me!
A full week has gone by, and on a whim, I called again today...just to see. Lo and behold, they have my chart notes. When I asked when they had been received, she didn't know. I told her I'd been waiting for a call and she didn't respond. My tone for the remainder of the conversation changed.
She proceeds to explain to me that the surgeon does consults on Mondays in Tacoma, and at sporadic outlying clinics on Thursdays. She asks me where I'd like to schedule the appointment. I proceed to explain to her that the location didn't matter; I needed the soonest available appointment.
April 29th.
I asked to be placed on the cancellation list. "You would like to cancel your appointment?" No, I explained, I would like to be notified when someone ELSE cancels THEIR appointment. "Oh, that's not possible because you are a new patient." Okay, fine.
So not one hour later, the pump clinic RN calls me. "I see you have an appointment." Yes I replied, a little disgruntled. I told her they wouldn't put me on a cancellation list. She chuckled and said, "well, I made a call and talked to the right person, and they will be calling you if or when there is a cancellation". Needless to say, I thanked her profusely!
She is my angel and she knows which strings to pull and whose bell to ring. Now, I am praying for a cancellation such that I can get last minute childcare and physically get to the location on time! Yikes!
When I spoke with the receptionist at the surgeon's office last Thursday, she had told me that I couldn't make an appointment yet because they didn't have my chart notes. She assured me that they'd call me as soon as possible once the notes were received. I believed her, silly me!
A full week has gone by, and on a whim, I called again today...just to see. Lo and behold, they have my chart notes. When I asked when they had been received, she didn't know. I told her I'd been waiting for a call and she didn't respond. My tone for the remainder of the conversation changed.
She proceeds to explain to me that the surgeon does consults on Mondays in Tacoma, and at sporadic outlying clinics on Thursdays. She asks me where I'd like to schedule the appointment. I proceed to explain to her that the location didn't matter; I needed the soonest available appointment.
April 29th.
I asked to be placed on the cancellation list. "You would like to cancel your appointment?" No, I explained, I would like to be notified when someone ELSE cancels THEIR appointment. "Oh, that's not possible because you are a new patient." Okay, fine.
So not one hour later, the pump clinic RN calls me. "I see you have an appointment." Yes I replied, a little disgruntled. I told her they wouldn't put me on a cancellation list. She chuckled and said, "well, I made a call and talked to the right person, and they will be calling you if or when there is a cancellation". Needless to say, I thanked her profusely!
She is my angel and she knows which strings to pull and whose bell to ring. Now, I am praying for a cancellation such that I can get last minute childcare and physically get to the location on time! Yikes!
Saturday, April 3, 2010
Drumroll please...
...according to the psychologist, I am NOT crazy! Like there was any doubt, right? The appointment was scheduled for 1 and a half hours, but mine took 2 hours. It started out as I expected. He asked me questions such as what were my expectations, what did I know about the pump, etc. Then I got to do a series of tests. Identifying pictures (chair, eyeglasses, bird), counting backwards from 20 as fast as I could, orientation to time, who is the President, etc.
THEN, he gave me a booklet and bubble form to answer 217 questions. Yes, 217 questions. I looked at the bubble form, then looked at him, and said "I feel like I'm back in school!". He chuckled and left the room. "Take your time" he said as he closed the door. I won't bore you with what the questions were on the "test", but when I was finally done, he glanced at the answer sheet quickly and said "I don't see any problems here". I'm guessing he's seen about a thousand of them before.
Later that day, the pump clinic RN called me. She said, "God wants you to have this pump". I was quiet for a moment and replied with "...okay?". She reminded me how quickly the test dose came together. She reminded me how I was able to get an appointment with the psychologist 2 days after they contacted me (normally would have been at least 2 weeks). She further explained that normally, the psychologist wouldn't send his report to her for at least a week.
He sought her out and spoke with her immediately after I left his office.
The whole process is moving faster than normal, and I have the Lord to thank for that! For all who have been praying on my behalf, thank you.
I wait to hear from the surgeon's office to schedule the pre-surgical consult. That should be any day as they just need my chart notes and report from the psychologist. With any luck, the consult will be within the next two weeks, with surgery after that. Without any hiccups, I should have the surgery by the end of the month! Please leave me a comment if you'd like; I'd love to hear from you.
PS: "Greatly Blessed by Kate the Great" has four new posts, highlighting my recent trip to CA with pictures and stories. Check it out!
THEN, he gave me a booklet and bubble form to answer 217 questions. Yes, 217 questions. I looked at the bubble form, then looked at him, and said "I feel like I'm back in school!". He chuckled and left the room. "Take your time" he said as he closed the door. I won't bore you with what the questions were on the "test", but when I was finally done, he glanced at the answer sheet quickly and said "I don't see any problems here". I'm guessing he's seen about a thousand of them before.
Later that day, the pump clinic RN called me. She said, "God wants you to have this pump". I was quiet for a moment and replied with "...okay?". She reminded me how quickly the test dose came together. She reminded me how I was able to get an appointment with the psychologist 2 days after they contacted me (normally would have been at least 2 weeks). She further explained that normally, the psychologist wouldn't send his report to her for at least a week.
He sought her out and spoke with her immediately after I left his office.
The whole process is moving faster than normal, and I have the Lord to thank for that! For all who have been praying on my behalf, thank you.
I wait to hear from the surgeon's office to schedule the pre-surgical consult. That should be any day as they just need my chart notes and report from the psychologist. With any luck, the consult will be within the next two weeks, with surgery after that. Without any hiccups, I should have the surgery by the end of the month! Please leave me a comment if you'd like; I'd love to hear from you.
PS: "Greatly Blessed by Kate the Great" has four new posts, highlighting my recent trip to CA with pictures and stories. Check it out!
Friday, April 2, 2010
The Dentist's Office
I had my 6 month check-up and cleaning on 3/31. I have been going to the same clinic since I was about 4 years old, so needless to say, the staff there is practically family!
They were stunned to see me in my wheelchair, albeit it's a snazzy one. But they were so loving and supportive and concerned. I wouldn't have expected anything less of course!
I briefly updated my dentist and dental hygienist with my current situation, plan for surgery, and projected outcome. They thanked me for the info and my dentist said, "I'll see you walking in here for your next appointment in 6 months". I could not disagree!
They were stunned to see me in my wheelchair, albeit it's a snazzy one. But they were so loving and supportive and concerned. I wouldn't have expected anything less of course!
I briefly updated my dentist and dental hygienist with my current situation, plan for surgery, and projected outcome. They thanked me for the info and my dentist said, "I'll see you walking in here for your next appointment in 6 months". I could not disagree!
Wednesday, March 31, 2010
A nice reprieve
The next step in the process of pump placement is a visit with the psychologist. It just so happens that while I was waiting to make that appointment (it took 20 days to get the call to even make the appointment), my family went to central California on a four day trip!
It was wonderful, and the timing could not have been better. Angels watched over us the whole time because in addition to perfect weather, there were ZERO major complications and the trip went smoothly. If you are interested in knowing more about the trip, please visit my personal blog "Greatly Blessed by Kate the Great" (found under my blog list on the left of the page) for pictures and stories. I haven't posted it yet and it will take me several days to get it done, so patience is key!
The reason I need to see the psychologist is to make sure I'm not crazy. Haha! No comments from the peanut gallery please. Seriously, he needs to determine that I do not have unrealistic expectations about what the pump is going to do for me. For example, a woman in her late 20's had been in a wheel chair for 5 years and expected that the pump would allow her to return to aerobic exercise. After much counseling, the clinic would not approve the placement of a pump for her, and they parted ways.
I see the psychologist this Thursday and the appointment is scheduled for an hour and a half. Wow. I cannot begin to imagine what we're going to talk about for that long. I hope we don't go all the way back to my time in high school. Maybe it's just me, but I think it's safe to say most people had issues back then. Teenage drama issues.
I'll let you know if he thinks I'm okay. That is, if I'm not immediately admitted to the psych floor...
It was wonderful, and the timing could not have been better. Angels watched over us the whole time because in addition to perfect weather, there were ZERO major complications and the trip went smoothly. If you are interested in knowing more about the trip, please visit my personal blog "Greatly Blessed by Kate the Great" (found under my blog list on the left of the page) for pictures and stories. I haven't posted it yet and it will take me several days to get it done, so patience is key!
The reason I need to see the psychologist is to make sure I'm not crazy. Haha! No comments from the peanut gallery please. Seriously, he needs to determine that I do not have unrealistic expectations about what the pump is going to do for me. For example, a woman in her late 20's had been in a wheel chair for 5 years and expected that the pump would allow her to return to aerobic exercise. After much counseling, the clinic would not approve the placement of a pump for her, and they parted ways.
I see the psychologist this Thursday and the appointment is scheduled for an hour and a half. Wow. I cannot begin to imagine what we're going to talk about for that long. I hope we don't go all the way back to my time in high school. Maybe it's just me, but I think it's safe to say most people had issues back then. Teenage drama issues.
I'll let you know if he thinks I'm okay. That is, if I'm not immediately admitted to the psych floor...
Saturday, March 20, 2010
Feeling Better, Finally
I had no idea just how much the test dose was going to wreak havoc on my body! I went from massive drug level (oral dosing), to zero drug level (no oral dosing), to massive drug level (IT dose) followed by rapid zero drug level (metabolism), to slow reintroduction of oral dosing. My body was in a state of shock for about a day and a half as things got back to somewhat normalcy. I am not yet to pre-test dose levels and control of my spasticity and am wanting so bad to wake up tomorrow morning with everything done and over with!
I am most hopeful that surgery will be scheduled as early as mid-April, though that is being optomistic. After the pump is surgically implanted at Tacoma General Hospital (one overnight stay at best), I will be discharged and immediately admitted to Good Samaritan Hospital for 7-10 days where the pump experts will tweak my dose levels and perform aggressive physical therapy. After that, it should be just a matter of maintenance of both. Maintenance depending on my response to changes, but estimated to be monthly at the most, every 3-6 months once stabilized.
For now, I have completed my 2nd of three doses of IV steroids. These are high dose, pulsed infusions for the sole purpose of immuno-supression. The root cause of MS is that it is an automimmune disease; an overactive immune response, such that it attacks the neurologic system. Every three months I will be getting these infusions, as before I would only get them in response to a relapse. Ever had them? So not my idea of a good time.
The current drugs on the market for MS (doesn't treat it, just shows that over time cause LESS disability) are no longer viable options for me. I have tried many of them without much success. Rituximab is the next promising drug for me, a drug currently used to treat Rheumatoid Arthritis and Lymphomas. It is in phase III trials and is showing excellent results, but since it is not "off-label" for MS, insurance won't pay for it. My neurologist is asking the manufacturer on my behalf to donate it to me on humanitarian grounds.
There is much on my plate, but I am ever faithful that things indeed are looking up. I appreciate the support from friends, family, and now coworkers. It is a tough thing to share this stuff, so thank you all for the wonderful words of encouragement. I do feel myself "virtually" hugged by them!
I am most hopeful that surgery will be scheduled as early as mid-April, though that is being optomistic. After the pump is surgically implanted at Tacoma General Hospital (one overnight stay at best), I will be discharged and immediately admitted to Good Samaritan Hospital for 7-10 days where the pump experts will tweak my dose levels and perform aggressive physical therapy. After that, it should be just a matter of maintenance of both. Maintenance depending on my response to changes, but estimated to be monthly at the most, every 3-6 months once stabilized.
For now, I have completed my 2nd of three doses of IV steroids. These are high dose, pulsed infusions for the sole purpose of immuno-supression. The root cause of MS is that it is an automimmune disease; an overactive immune response, such that it attacks the neurologic system. Every three months I will be getting these infusions, as before I would only get them in response to a relapse. Ever had them? So not my idea of a good time.
The current drugs on the market for MS (doesn't treat it, just shows that over time cause LESS disability) are no longer viable options for me. I have tried many of them without much success. Rituximab is the next promising drug for me, a drug currently used to treat Rheumatoid Arthritis and Lymphomas. It is in phase III trials and is showing excellent results, but since it is not "off-label" for MS, insurance won't pay for it. My neurologist is asking the manufacturer on my behalf to donate it to me on humanitarian grounds.
There is much on my plate, but I am ever faithful that things indeed are looking up. I appreciate the support from friends, family, and now coworkers. It is a tough thing to share this stuff, so thank you all for the wonderful words of encouragement. I do feel myself "virtually" hugged by them!
Wednesday, March 17, 2010
Not for the weak of heart
The test dose was on Tuesday, and it was a doozy of a day. I'll spare you the gorey details, but the good news is I passed and am deemed a candidate for the pump! Now the challenge lies in scheduling, and the aggressive physical therapy that follows recovery and dose tweeking.
My husband thought he'd try to calm my nerves by video taping me first thing. This video was taken right after I was admitted.
My husband thought he'd try to calm my nerves by video taping me first thing. This video was taken right after I was admitted.
Saturday, March 13, 2010
So what is a "test dose"?
There are four steps to complete before someone can be approved for the surgery.
1.) referral from my neurologist -Check
2.) evaluation by my rehabilatation physician -Check
3.) assessment and final approval by the pump clinic -Check
4.) test dose of intrathecal Baclofen -March 16th
So what does a test dose of intrathecal Baclofen entail? Here are the nuts and bolts of the procedure:
Beginning at noon on Monday 3/15, I have to quit my oral dosing cold turkey. This part I am NOT looking forward to. Currently, I take my doses 5 hours apart during the day and by the fourth hour I'm wishing it was time for my next dose.
I check into Good Sam on Tuesday morning and am admitted straight to PACU. A pre-dose assessment by PT is done for a baseline of the severity of my spasticity. Then I am prepped in the OR for a lumbar puncture (spinal tap) which is when the Baclofen is injected into the intrathecal space of my spinal cord.
Funny story about my last LP 6 years ago...after 20 excrutiatingly painful minutes of repeated attempts to access my cerebral spinal fluid, the physician finally got the needle in place and the specimen was taken. When she was finished, she explained that the reason she had such a hard time was that given my petite frame, she didn't want to go too far and nick my spinal cord. I thanked her for her precaution and quipped "I guess that means I don't need to grow a back-bone"! Being of middle Eastern descent, she gave me a blank look. After explaining the expression, she chuckled.
Back to the test dose...I am then moved to a patient room where the same Physical Therapist will repeat her assessment hourly. This is to determine when the medication peaks and how long it takes to clear my system. The pump clinic RN and rehab physician will also be assessing me thoughout the day. I am expecting to be able to leave the hospital around 3 or 4 in the afternoon.
If I respond well to the test dose, I will be scheduled for surgery of the pump implantation at Tacoma General Hospital (where I work). I do not know how long to expect. So this is it! Please pray the test dose goes well!
1.) referral from my neurologist -Check
2.) evaluation by my rehabilatation physician -Check
3.) assessment and final approval by the pump clinic -Check
4.) test dose of intrathecal Baclofen -March 16th
So what does a test dose of intrathecal Baclofen entail? Here are the nuts and bolts of the procedure:
Beginning at noon on Monday 3/15, I have to quit my oral dosing cold turkey. This part I am NOT looking forward to. Currently, I take my doses 5 hours apart during the day and by the fourth hour I'm wishing it was time for my next dose.
I check into Good Sam on Tuesday morning and am admitted straight to PACU. A pre-dose assessment by PT is done for a baseline of the severity of my spasticity. Then I am prepped in the OR for a lumbar puncture (spinal tap) which is when the Baclofen is injected into the intrathecal space of my spinal cord.
Funny story about my last LP 6 years ago...after 20 excrutiatingly painful minutes of repeated attempts to access my cerebral spinal fluid, the physician finally got the needle in place and the specimen was taken. When she was finished, she explained that the reason she had such a hard time was that given my petite frame, she didn't want to go too far and nick my spinal cord. I thanked her for her precaution and quipped "I guess that means I don't need to grow a back-bone"! Being of middle Eastern descent, she gave me a blank look. After explaining the expression, she chuckled.
Back to the test dose...I am then moved to a patient room where the same Physical Therapist will repeat her assessment hourly. This is to determine when the medication peaks and how long it takes to clear my system. The pump clinic RN and rehab physician will also be assessing me thoughout the day. I am expecting to be able to leave the hospital around 3 or 4 in the afternoon.
If I respond well to the test dose, I will be scheduled for surgery of the pump implantation at Tacoma General Hospital (where I work). I do not know how long to expect. So this is it! Please pray the test dose goes well!
Thursday, March 11, 2010
Big News
I saw my neurologist on 3/9 as a regular "just checking in" appointment. The first item of business was to go over the paperwork and latest request from my employer to permit me to use my wheelchair at work. I don't want to use it to provide patient care, just to help me get around. After that he wrote me some more prescriptions to help me sleep, did the exam (I can do it in my sleep by now), set me up for more IV steroid infusions, and I was on my way. I'll see him again in June. Wow, a whole 3 months this time!
I went to the Rehabilitation Clinic at Good Sam on 3/10 for the next step in the evaluation of the placement of the Baclofen pump. I don't sleep well at night anyway, but this REALLY kept me up the night before! I was worried that for whatever reason, I wouldn't meet the criteria. The Physical Therapist checked me over and recommended the pump. I met with the Registered Nurse (who runs the show at the clinic). She took one look at the amount of my oral dose (I'm up to 140mg/day)and about fell out of her chair! After interviewing me further and reviewing my history, she wanted to make sure I understood what I was getting into. After I said "let's do it", she agreed!
Now for the big news...my test dose is this Tuesday! I am shocked! I thought I'd have to wait another 4 to 6 weeks for this next step, but the planets must have aligned because they could schedule it that quickly. I will be encountering nursing, PT, anesthesia, and my rehab physician. It truly is amazing that all four were available.
If the test dose goes well, I'll be scheduled for surgery. I'll write more about what the test dose procedure entails later. For now, the dishes in the sink are calling...
I went to the Rehabilitation Clinic at Good Sam on 3/10 for the next step in the evaluation of the placement of the Baclofen pump. I don't sleep well at night anyway, but this REALLY kept me up the night before! I was worried that for whatever reason, I wouldn't meet the criteria. The Physical Therapist checked me over and recommended the pump. I met with the Registered Nurse (who runs the show at the clinic). She took one look at the amount of my oral dose (I'm up to 140mg/day)and about fell out of her chair! After interviewing me further and reviewing my history, she wanted to make sure I understood what I was getting into. After I said "let's do it", she agreed!
Now for the big news...my test dose is this Tuesday! I am shocked! I thought I'd have to wait another 4 to 6 weeks for this next step, but the planets must have aligned because they could schedule it that quickly. I will be encountering nursing, PT, anesthesia, and my rehab physician. It truly is amazing that all four were available.
If the test dose goes well, I'll be scheduled for surgery. I'll write more about what the test dose procedure entails later. For now, the dishes in the sink are calling...
Sunday, February 28, 2010
Update #1
I have been off work since 2/11 as "Health Leave". I am trying very hard to convince the powers that be to allow me to work my shifts with the aid of my wheelchair. Please pray that the answer comes soon and that the answer will be YES!
I take a medication called Baclofen for the spasticity in my legs which has progressively gotten out of control since this past summer. The recommended maximum dose is 80 mg per day and I am taking 130 mg per day. I could go as high as 160, but due to the lack of response and the unpleasant side effects, I am uninterested in going any higher.
I am being evaluated for the implantation of a Baclofen medication pump. The pump would be implanted in my abdomen and the catheter would wrap around my side, be sutured into my spine, and the tip would rest in the intrathecal space of my spinal cord.
The benefit would be a targeted dose to the problem areas in micrograms versus the milligrams in the pill form. As a result, the IT medication would bypass my other organs causing less unpleasant side effects. The hope is that the pump along with aggressive physical therapy would return function to my legs comparable to many months ago.
The drawbacks are obvious; the risks that surgery entails and pump malfunction which could be devastating. I am willing to take on the risk.
The evaluation process will be about 2 months, followed by surgery and recovery. Hopefully, I am looking at approximately 3 to 4 months but possibly longer before I am up and running (figuratively speaking).
I take a medication called Baclofen for the spasticity in my legs which has progressively gotten out of control since this past summer. The recommended maximum dose is 80 mg per day and I am taking 130 mg per day. I could go as high as 160, but due to the lack of response and the unpleasant side effects, I am uninterested in going any higher.
I am being evaluated for the implantation of a Baclofen medication pump. The pump would be implanted in my abdomen and the catheter would wrap around my side, be sutured into my spine, and the tip would rest in the intrathecal space of my spinal cord.
The benefit would be a targeted dose to the problem areas in micrograms versus the milligrams in the pill form. As a result, the IT medication would bypass my other organs causing less unpleasant side effects. The hope is that the pump along with aggressive physical therapy would return function to my legs comparable to many months ago.
The drawbacks are obvious; the risks that surgery entails and pump malfunction which could be devastating. I am willing to take on the risk.
The evaluation process will be about 2 months, followed by surgery and recovery. Hopefully, I am looking at approximately 3 to 4 months but possibly longer before I am up and running (figuratively speaking).
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